Public Hearing - March 12, 2014
1 BEFORE THE NEW YORK STATE SENATE
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2
ROUNDTABLE DISCUSSION ON
3
THE COMPASSIONATE CARE ACT
4
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5
6
Albany, New York
7
March 12, 2014, at 10:00 a.m.
8
9
10 PRESIDING:
11 Senator Diane J. Savino
12
13 PRESENT:
14 Senator David Carlucci
15 Senator Mark Grisanti
16 Senator Ruth Hassell-Thompson
17 Senator Brad Hoylman
18 Senator George D. Maziarz
19 Senator Joseph Robach
20 Senator Malcolm A. Smith
21 Senator David Valesky
22 Assemblyman Matthew Titone
23
24
25
2
1 SPEAKERS: PAGE QUESTIONS
2 Cindy Gold Tangney 5
Parent Advocate
3 Chester, New York
4 Susan Rusinko 10
Patient
5 Resident of Auburn, New York
6 Donna Romano 20 26
Patient
7 Resident of Syracuse, New York
8 Meg Sanders 31 38
CEO
9 Gaia Plant-Based Medicine
10 Charles Feldmann 31 38
Corporate Counsel for
11 Gaia Plant-Based Medicine
Partner at Feldmann Nagel
12
Dean Petkanis 57 63
13 Co-Founder, Chairman & CEO
Thomas Kikis
14 Co-Founder and Partner
KannaLife Sciences
15
Jake Schrader 75 81
16 Co-President
Articulated Investors
17
Jason Pinsky 90 101
18 Chief Technology Officer
United Cannabis Corp.
19
Susanne Truesdale 102
20 Patient
Clifton Park, New York
21
Amy Reising 105 110
22 Co-Founder
Veterans for Alternative Care
23
Leo Feit 105 110
24 Veterans Advocate
25
3
1
SPEAKERS (Continued): PAGE QUESTIONS
2
Kunle Martins 105 110
3 Veterans Advocate
4 Kate Hintz 113
Parent
5
Missy Miller 113
6 Parent
7 Polly VanderWoude 113
Parent
8
Joe Fontana 136
9 Political Director
Local 338, RWDSU
10
Ed Pichardo 136
11 On Behalf of the
Worker's Compensation Alliance
12
Liz Delureficio [ph.] 143
13 Parent Advocate
14 Hillary Savoie [ph.] 143
Parent Advocate
15
Mike and Felicia Russo 143
16 Parent Advocates
17 Airelle Gerard 152
Current Medical Student
18
Donna Schwier [ph.] 152
19 Registered Nurse, and a Patient
20 Kira Coburn 161
21 Dawn Carney 161
Patient Resident of Auburn, New York
22
Andrei Bogolubov 161
23 Vice President
PalliaTech
24
---oOo---
25
4
1 SENATOR SAVINO: So, good morning, everyone.
2 I'm State Senator Diane Savino, and I am the
3 main sponsor of the Compassionate Care Act of the
4 New York State Senate.
5 I am joined here by my colleague in the
6 Senate Majority Coalition and the Independent
7 Democratic Conference, Senator David Carlucci from
8 Rockland County.
9 We will be joined, on and off, during our
10 period, by members coming from all over the Senate,
11 and, potentially, some members from the Assembly are
12 going to pop in, as we commence this roundtable on
13 the Compassionate Care Act in the Senate.
14 First, I want to say to everyone, thank you
15 for your support for this piece of legislation.
16 You are predominantly responsible for the
17 movement in the Senate that has occurred in the past
18 six months, and you should give yourselves a round
19 of applause for that.
20 [Applause.]
21 SENATOR SAVINO: A year ago, people said that
22 this bill was dead on arrival in the Senate.
23 We knew better, and, we worked very
24 aggressively to begin to change people's minds.
25 And what we're doing today is trying to
5
1 change the last few minds that are out there.
2 Fifteen minutes ago, Senator Joe Addabbo from
3 Queens popped his head in; I introduced him. He
4 announced that he is now a new "yes" vote.
5 So we are building members. We have way more
6 votes than we need to pass the bill right now.
7 Now it's about getting it through the
8 legislative process, and trying to snag a few more
9 members on the way.
10 So, we're going to start today with our first
11 speaker, Cindy Gold Tangney, who's a parent
12 advocate.
13 Her granddaughter is, right now, in Colorado,
14 and Cindy is going to tell her story.
15 Come on down, Cindy.
16 [Applause.]
17 CINDY GOLD TANGNEY: Good morning.
18 SENATOR SAVINO: Good morning.
19 CINDY GOLD TANGNEY: I love seeing all the
20 kids here today.
21 And, I just want to let you know that I don't
22 have my granddaughter here today, but she is on
23 the -- in on the cover of several newspapers, and
24 she's in Colorado right now receiving treatment of
25 medical marijuana.
6
1 So what I want to do this morning is tell you
2 why I became an advocate for medical marijuana.
3 My granddaughter Mabel Grace was born in May,
4 and at 5 weeks old she started having seizures.
5 She was admitted to Columbian Presbyterian
6 Medical Center in New York and spent three weeks
7 there.
8 Imagine having a baby having more than
9 20 seizures a day and not knowing what's going on.
10 And the doctors were quick to offer drugs like
11 phenobarbital and TOPAMAX and Depakote.
12 During the three weeks, Mabel had many tests,
13 scans, EEGs, blood work, to determine what her
14 problem was.
15 We never found that out after three weeks, so
16 we came home with the baby, still with seizures.
17 And after a few months went by, she was then
18 diagnosed with infantile spasms, and the only thing
19 the doctors had to offer us at that time was more
20 drugs.
21 The side effects of the drugs on a
22 5-month-old baby is amazing. They don't prescribe
23 these drugs to children under 4 years old.
24 So we came home.
25 She was diagnosed with the infantile spasms,
7
1 and they added another drug, and this time they
2 added a drug called "SABRIL."
3 SABRIL, you can become blind from SABRIL; so
4 that's one of the side effects of SABRIl.
5 So over the course of time, Mabel tried and
6 failed five drugs.
7 In August, we watched the documentary
8 "Weeds," by Sanjay Gupta, and my daughter and
9 I looked at each other, along with my son-in-law,
10 and we knew that we had to try that. Maybe that
11 would be the answer for Mabel. The drugs were not
12 helping her.
13 In September, she was diagnosed, after some
14 genetics tests, with a very rare genetics disorder
15 called "CDKL5," and CDKL5 presents itself with early
16 onset of seizures.
17 We knew we had something to do. We knew did
18 not have a lot of time, and we went -- we drove to
19 Vermont, and we met Paige Figi and Joel Stanley, and
20 they gave us hope. And they said, in Colorado,
21 Charlotte Figi was using something called
22 "Charlotte's Web." And we heard about it in the
23 documentary by Sanjay Gupta.
24 We then drove out to Mineola, and we
25 testified there in front of Assemblyman Gottfried.
8
1 And, soon after then, we realized that
2 Colorado was the only answer, that the state that we
3 lived in, that I raised my children in, my daughter
4 lived in, was not going to give her what she needed;
5 at least the opportunity to try.
6 We don't know if that's the answer, but how
7 do we know if we don't try.
8 So she left her -- she's gone now for
9 58 days.
10 I call Governor Cuomo daily and remind him
11 that she's gone another day.
12 She left her support system, her husband who
13 needs to be home in New York State to work, to
14 support them in Colorado.
15 So I'm here asking you to support the
16 Compassionate Care Act, whoever here needs to hear
17 that.
18 My daughter and granddaughter deserve the
19 right to live in their state and have a medication
20 that's prescribed by their doctor. Not by lawmakers
21 making decisions; by their doctor. Her doctor would
22 prescribe this if she was living in New York State.
23 I wonder if anyone saw the documentary
24 "Weeds" last night? I know it was late.
25 SENATOR SAVINO: No.
9
1 CINDY GOLD TANGNEY: I called a lot of
2 Senators yesterday and asked them if they would
3 please watch it or tape on it, or somebody watch it,
4 because the information is something that people
5 have to listen to; they need to hear this
6 information.
7 So in closing, I would like to say:
8 That if it was any one of your children, what
9 would you do?
10 You would probably go to the ends of the
11 earth, which is what my daughter is doing, and I'm
12 very, very proud of her. She's living in Colorado
13 by herself.
14 She's actually in the home of Paige Figi, in
15 the article in "People Magazine," if people haven't
16 seen it.
17 And, they're going to -- and she's going to
18 try the Charlotte's Web very soon. She was on a
19 waiting list.
20 As people know, when you get out in Colorado,
21 you can't just automatically try Charlotte's Web.
22 She went to two doctors that prescribed it.
23 And, hopefully, within the next couple of weeks that
24 will be what she's going to do.
25 So maybe this won't work, but we are going to
10
1 try it.
2 So I ask that you please support the
3 Compassionate Care Act, and us parents will do
4 anything that we have to do.
5 I appreciate all your hard work.
6 Thank you very much.
7 [Applause.]
8 SENATOR SAVINO: We've been joined by
9 Senator Dave Valesky, on the end, another member of
10 the Independent Democratic Conference and the
11 Coalition;
12 And, Senator Mark Grisanti from the
13 Coalition, who was the first Republican to come out
14 publicly and support the Compassionate Care Act.
15 [Applause.]
16 SENATOR SAVINO: Our next --
17 SENATOR GRISANTI: I understand we dragged a
18 few others.
19 SENATOR SAVINO: Yes, we've dragged a few.
20 And a few more. They'll keep coming.
21 The next speaker is Susan Rusinko, who
22 suffers from MS.
23 [Applause.]
24 SUSAN RUSINKO: Thank you for allowing me to
25 speak today, before I forget that.
11
1 My name is Susan Rusinko. I am 52 years old.
2 I'm happily married to Joe for 26 years.
3 I often joke with him that he got the worse
4 in the "for better, for worse." He always tells me
5 "no."
6 I do have an extraordinary husband.
7 I have three sons. Nicholas is 24, and
8 I have identical twins who are 21.
9 I'd like you to understand my journey a
10 little bit prior to my diagnosis with
11 multiple sclerosis, so you can understand why I --
12 what I'm doing.
13 I was born and raised in Auburn, New York, in
14 a large Italian, Catholic family; five boys,
15 five girls. I am number seven, and the favorite.
16 My parents are 85 years old.
17 Eight out of ten of us reside in Auburn,
18 New York, to this day, and every Sunday, we still go
19 to my parents house for Sunday dinner.
20 My sisters are my closest and dearest
21 friends, and we do not generally make a plan unless
22 we've spoken to one another.
23 My mother and four sisters and I go away
24 shopping Thanksgiving weekend, Friday, Saturday,
25 Sunday; no husbands, no kids.
12
1 It's a time that we -- that I cherish, and
2 I've done it since before I was married.
3 Each of us girls also has a pie to bake at
4 Thanksgiving, and specific Italian cookies and
5 breads for Christmas.
6 Family really is such an important part of my
7 day-to-day life.
8 Now, from the time our sons were small, my
9 husband said to them: That you could play any sport
10 you want, except for hockey.
11 While our oldest son, Nicholas, played a
12 sport for every season from the age of 5, until he
13 graduated high school.
14 So when Jacob and Noah turned 5, they
15 decided, hey, they'd like to try a few sports, as
16 well.
17 After they got through Pony League, though,
18 Jacob and Noah decided that sports weren't for them,
19 so they decided to start playing piano, electric and
20 bass guitar, and even drums. And to this day,
21 I have music in my home every day.
22 We were a very active family. We rode bikes
23 you know, I roller-bladed to Barry White. Life was
24 good.
25 In February, we took our very first family
13
1 vacation -- in February of 2000, we took our first
2 family vacation, to Disney World, six nights and
3 seven fun-filled days. It was fabulous, but I was
4 exhausted.
5 It is a small world after all, so no sooner
6 had we gotten off the Tea Cups, we got onto a whole
7 nother cup of tea.
8 When I was diagnosed with multiple sclerosis
9 in 2000, at the age of 38, Nicholas was 10 and in
10 fifth grade, and Jacob and Noah were 7 and in
11 second grade.
12 I was teaching two water-aerobic classes a
13 day, five days a week, as well as waiting tables
14 two nights a week at a fine-dining restaurant.
15 I started noticing little things: tingling,
16 numbness. I was dropping things on a pretty regular
17 basis. A butter dish, that first year, just never
18 stood a chance in our house.
19 My vision became blurry. I had bladder and
20 bowel issues.
21 Things were going really haywire.
22 So on Friday, April 14th of 2000, I woke up,
23 and my right leg kept giving out on me like it
24 wasn't even there. It just wouldn't support me.
25 So my husband's off to work, my sons are off
14
1 to school, and little did any of us know it would be
2 four weeks before would I return to that kitchen.
3 Imagine kissing your mother goodbye and not
4 seeing her in your home for four weeks.
5 I was at Upstate Medical Center for one week
6 in Syracuse, and then deemed not safe to return home
7 in that condition. So I was sent to St. Camillus
8 Rehab Center in Syracuse for three weeks of
9 intensive therapy.
10 I was taught how to do any and all household
11 chores from the comforts a wheelchair. I learned to
12 walk with a brace.
13 I was good to go home.
14 I finally got to climb the front porch of
15 our -- into our new life.
16 Now I'm thinking, Great, I can do everything
17 I need to do at home, but, Nicholas is 10, Jacob and
18 Noah are 7; they're boys, through and through.
19 Am I still going to be able to keep up?
20 What if I am not able to care for my own
21 children?
22 As a mother, I wanted to be able to keep up.
23 I wanted to be there for their first catch, hit
24 tackle, touchdown, basket. I wanted to be there
25 when they strapped on their guitars and sat down to
15
1 their first piano recital.
2 When my legs became stiffer and painful,
3 I became more fatigued, my energy was level
4 depleted.
5 I really thought, there has to be a better
6 way.
7 I have to be able to cook for my family and
8 bake for my family, I have to try to keep my house
9 clean, and still have enough energy to enjoy my
10 family.
11 I am a good patient. I do agree with my
12 neurologist most of the time.
13 However, one symptom starts and you get a
14 medication. And then another symptom starts, so you
15 get another medication to stop that symptom.
16 So by 2003, now I'm on 17 pills, and at home,
17 on the couch, in a prescribed drug-induced haze.
18 I wasn't living my life.
19 I wasn't able to go to any sporting events.
20 I couldn't leave my house.
21 When you have bladder and bowel issues,
22 you're not leaving your house.
23 So there my husband goes with my three sons,
24 and I'm still stuck at home.
25 So, it was time for me to advocate for
16
1 myself.
2 I spoke with my neurologist, and said:
3 I really -- I'm tired of what I deem as the
4 "Elvis plan"; something to wake me you, something to
5 help me sleep. It's not my life.
6 So he decided -- when I spoke with him,
7 I said to him that I need to be weaned -- I need to
8 get off of this medication, and I am also going to
9 smoke marijuana illegally.
10 Of course, his very first thing he said to me
11 was: Oh, my gosh, are you going to be able to get
12 it from a safe place?
13 So, now I also have the added worry about my
14 parents and my family and our children and friends,
15 and what this could do to my family.
16 How could I explain to my elderly parents,
17 how would my parents explain to their friends at the
18 YMCA, that their daughter's name -- why their
19 daughter's name was in the paper?
20 But, again, I wanted to live my life.
21 I wanted to be able to be active in my children's
22 life. I wanted to cook dinner, I wanted to bake.
23 So as our sons got older, I did share with
24 them that I am smoking marijuana.
25 And of all the times, I was so nervous,
17
1 putting all of us in jeopardy.
2 My boys said to me: Mom, we want you to do
3 whatever is going to help you have a better day and
4 a good life.
5 I wondered if they were embarrassed that
6 their mother uses marijuana.
7 They hugged me and said: Mom, you do way
8 more embarrassing stuff than that.
9 [Laughter.]
10 SUSAN RUSINKO: I love my sons. I love my
11 parents.
12 My parents know, as do all nine of my
13 brothers and sisters.
14 My mother has said to me, she was always
15 amazed at what I was able to do having
16 multiple sclerosis.
17 And I said to her: You had no idea that
18 I was using marijuana, and that's what was helping
19 me get through.
20 Because I have used marijuana:
21 I have been able to walk through historical
22 forts;
23 I've seen Jackie Kennedy's entire collection;
24 I've been to the Hockey, Baseball, Football,
25 Hall of Fames;
18
1 I've canoed in 12 Great Races in my hometown
2 in Auburn;
3 I'm still able to bake those pies, and dozens
4 and dozen of cookies.
5 And I think that, now, April is my
6 14th anniversary, and I think it's high time
7 somebody figure out that marijuana does actually
8 work.
9 This disease is unpredictable, and every day
10 is a different day, and it can go from bad to worse
11 in a blink of an eye.
12 But what helps me, is knowing that so many
13 people want me to do what I have to do to live my
14 life as comfortably as possible.
15 So it's 14 years in April, and I have watched
16 my sons -- I've watch Nicholas hit home runs and
17 make touchdowns and baskets, and some of the most
18 amazing catches.
19 I watch Jacob and Jonah play gigs that had
20 the crowd eating out of their hands.
21 And I stood on the proud -- on the sidelines
22 when Noah was chosen to play the National Anthem at
23 a couple Single-A ballgames in our hometown.
24 I was there when my sons walked the stage to
25 get their high school diplomas, and I pray that I'm
19
1 there when they get to walk the stage for their
2 college diplomas, and for their weddings, and for
3 grandchildren.
4 So let me tell you: There doesn't need to be
5 anymore research. We've researched it to death.
6 It needs to get passed.
7 Without marijuana, I would not be sitting
8 here today, asking, begging, pleading, for this bill
9 to get passed.
10 I do risk legal ramification every single
11 day, but for me, it's something that I have to do so
12 that I can live my life.
13 Even if it is not something that each of you
14 choose for yourself, please think of your loved one,
15 and wouldn't you want them to have a good life, and
16 to be able to live their life as comfortably as
17 possible?
18 I certainly hope that this year, 2014, is the
19 year for the Compassionate Care Act to pass.
20 I'm 14 years in my disease.
21 These children don't -- I don't know that
22 they have 14 years, you know?
23 So for me, yeah, I guess I can still go
24 illegally. They can't.
25 Please do something for these children.
20
1 We need the Compassionate Care Act.
2 Thank you.
3 [Applause.]
4 SENATOR SAVINO: Thank you, Susan.
5 We have been joined now, also, by
6 Senator Brad Hoylman from Manhattan, and
7 Senator Joe Robach from Rochester.
8 [Applause.]
9 SENATOR SAVINO: And I believe up in the
10 audience I see back there, Senator Smith from
11 Queens.
12 You can come down and sit with us.
13 [Applause.]
14 SENATOR SAVINO: Our next speaker is
15 Donna Romano from the city of Syracuse. She also
16 suffers from MS.
17 [Applause.]
18 DONNA ROMANO: Don't applaud. I haven't said
19 anything good yet.
20 [Laughter.]
21 SENATOR SAVINO: You're here.
22 DONNA ROMANO: I'm here. It's been a rough
23 morning.
24 My name is Donna Romano, I'm from Syracuse.
25 I'm a Navy veteran of the Vietnam Era.
21
1 I have a seizure disorder, and, luckily,
2 I also have multiple sclerosis. Sort of like the
3 lottery.
4 My husband and I have three grown children,
5 and three very, very adorable grandchildren.
6 I've been a user of medical cannabis for
7 about five years.
8 Until that time, I was a law-abiding citizen,
9 as was expected of me, because I come from a family
10 of civil servants:
11 Three of my uncles were Syracuse policemen
12 and investigators;
13 My two nephews are firefighters: one in
14 Washington, D.C., and one in Virginia;
15 Another cousin is a firefighter in Syracuse;
16 And, my ex-brother-in-laws are also in
17 law enforcement.
18 The course of my MS has not been unusual,
19 except that it produces sensory symptoms at first,
20 and the motor deficit started to come recently.
21 I've had optic neuritis, blindness, deafness.
22 All those things were helped with IV steroids.
23 Those treatments took a toll on, you know, my bone
24 health, and just lead to a lot of different side
25 effects.
22
1 I've had perception and balance issues and
2 one-sided weakness that gets worse now as I, you
3 know, age.
4 My most troublesome symptom has always been
5 fatigue.
6 I would get up in the morning feeling like
7 I've been hit by a truck, and sometimes go from my
8 bed to the couch, to the bed again.
9 When all this nonsense first began, I was
10 home-schooling my three kids.
11 Doctors prescribed a pill for fatigue, which
12 turned out to be an antidepressant. Apparently,
13 there were several years of my not crying or
14 laughing while on that pill, as my family told me
15 later.
16 Then came a new pill for fatigue, a
17 controlled substance, which I'm still on once in a
18 while, and it's worked well, but it has the side
19 effect of increasing my blood pressure to high, from
20 border line.
21 There's just a thing, when you grow older,
22 there's more side effects with a lot of these
23 medications you're on.
24 Just like with the children, the side effects
25 for them are enormous for these medications that
23
1 they're put on.
2 So, there have been many other pills along
3 the journey. Self-injection, daily, for 10 years.
4 Just to combat the effects of one pill,
5 I would have to take another, just like Susan had
6 said. We've all heard that story.
7 So, I've also tried things: physical therapy,
8 water therapy, chiropractic, acupuncture, infrared
9 sauna, special diets, massage, biofeedback.
10 Received benefits from some. Some should be
11 covered by insurance.
12 But, still, the doctors, you know, they still
13 want you on the pills, the injections, and
14 everything.
15 Despite all the pills and all the things I've
16 tried, the symptoms continued to get worse,
17 especially my spinal pain and the spasticity of my
18 legs.
19 "Spasticity," you'll hear that word when
20 people with MS talk.
21 What that is, is like a charley horse in your
22 whole leg. And try as you might to stretch it, rub
23 it, you know, it just does not go away. And it
24 feels like your feet are sometimes in concrete
25 blocks, and that's how, you know, you're walking.
24
1 You see a lot of people with MS walking very
2 stiffly or widely gaited because of that.
3 And about that time that my legs started
4 getting really bad, a friend of mine -- I discovered
5 that a friend of mine was smoking medical marijuana
6 for her MS.
7 And so I decided, well, I'm going to try it,
8 and I really was amazed that I found relief.
9 I had that inner voice of mine keep saying:
10 Don't break the law. What will -- you know, what
11 will Uncle Andy say?
12 And, I just had to go with it.
13 You know, I did come out before my -- I was
14 in the newspaper, an article, in Syracuse, and I had
15 to call my elderly aunts to tell them about my
16 position ahead of time, because it's just that way
17 in my family.
18 So, anyway, I found relief.
19 My legs relaxed, they didn't jump around.
20 I could sleep.
21 And getting a night's sleep, you know what it
22 is to get a good night's sleep, you can function the
23 next day.
24 And, so, that caused me to, you know, be
25 there for my family. I'm active in the community.
25
1 I'm active in the MS community.
2 And now that my grandkids are not babies
3 anymore, they're toddlers, I have to be on. You
4 know, I have to be able to do things with them.
5 So, I realized that my MS flare-ups have
6 decreased significantly in the past five years.
7 I haven't had to take IV steroids since 2009.
8 I haven't seen my neurologist for over a
9 year. Our relationship has been very different
10 since the day I told her that I used medical
11 cannabis. She's very uncomfortable with my choice.
12 She doesn't want to discuss it.
13 And she has, instead of -- when I left her
14 office last, about, maybe it's 16 months, she never
15 said, Okay, make the appointment for six months.
16 I mean, I've been seeing her for 16 years.
17 And, that difference in her, and her reluctance,
18 leaves me hanging, you know, as to the condition of
19 my MS.
20 I mean, I'm sort of in a hard place now, you
21 know, where I feel better, and I think my symptoms
22 are abating when I use medication of cannabis. But,
23 I don't have that medical benefit of a provider that
24 I can talk with.
25 And that's really bothersome to me.
26
1 And that's one of the main reasons that I'm
2 here now, to open up that conversation with the
3 providers, and to let them feel -- you know, she
4 feels like she's going to be, I don't know,
5 sanctioned? reprimanded? I'm not sure.
6 And, so, that's why this Compassionate Care
7 Act also needs to be passed, so that we can have
8 those conversations, and I can have that support by
9 a medical provider again.
10 SENATOR SAVINO: Are there any -- any of your
11 other physicians, are they supportive of your
12 choice, without sanctioning it?
13 DONNA ROMANO: My acupuncturist, she's also
14 an anesthesiologist, she's okay with it. You know,
15 she still considers it a drug, which, you know, it
16 is, it's a medication.
17 But there really -- no, I don't. I don't
18 have -- they all sort of, Oh, we're not going to
19 talk about that. Don't tell me what...
20 You know?
21 I do have some of my treatment at the
22 VA hospital, because I have a disability. And,
23 often, they will ask me to urinate in a cup, to see
24 if I'm on anything.
25 I mean, they would prescribe me for my spine
27
1 pain. They would prescribe me oxycodone in a
2 minute, you know?
3 But, something like this, you know, they're
4 not willing to speak about.
5 So I just urge the Senators that are dragging
6 their feet, trying to make a decision, to consider
7 this, too: You know, that the doctors need to have
8 the freedom to speak to us, and provide for us in
9 the way that they should.
10 And I hope that they -- especially
11 Senator DeFrancisco, if you're listening -- would
12 vote yes for Compassionate Care Act, this session.
13 SENATOR SAVINO: Thank you, Donna.
14 I think Senator Robach has a question.
15 SENATOR ROBACH: I really don't have a
16 question.
17 I thank you, Donna, for sharing your story.
18 And I've heard Susan's when we had the little
19 roundtable with Senator Maziarz.
20 And I do think it's important to note that,
21 because I think this is so relevant, that this model
22 of the bill we're trying to promote is a medical
23 one, and under doctor supervision.
24 And there are many doctors that do adhere to
25 this, and are joining that, and are helping, you
28
1 know, move this. And have actually told patients,
2 which is, to me, the tough part.
3 You made the point so much, that in the vast
4 realm of pharmaceuticals that we already use, while
5 they have some good things, they have some bad side
6 effects.
7 And many physicians are saying: Let's at
8 least try this for complex cases, whether it's young
9 people with seizures, elderly people with, you know,
10 long-term debilitating diseases.
11 I think we can do what, you know, 19 other
12 states do, which aren't the ones that are getting
13 all the publicity, and have that on that medical
14 limited scale, to help you.
15 So, I just wanted to say, it's important to
16 know that all doctors aren't in that category.
17 DONNA ROMANO: I know.
18 I went to a program last week, about a new
19 oral medication for MS. And at the end of -- the
20 doctor was from Strong Memorial in Rochester.
21 SENATOR ROBACH: I've heard about it before.
22 DONNA ROMANO: Yeah, you have.
23 And so after his talk, and the patient
24 advocate that was there, speaking about that new
25 oral medication, which is a big deal in the
29
1 MS society -- MS group, because most of them have
2 been injectables, until recently, I asked the doctor
3 and the advocate what their position was on medical
4 marijuana.
5 And the doctor said, that he said: I'm all
6 for it. I think it should be legalized.
7 He said: I've seen a lot of patients respond
8 very well.
9 And I really thought to myself, if I lived in
10 Rochester, he would be my neurologist.
11 SENATOR ROBACH: Yeah, and I think I know who
12 you're speaking of.
13 So, many physicians have come out, pretty
14 cogent reasons, of, you know, why they support it,
15 too.
16 But, you know, in today's day and age, we've
17 gone to the model, where -- and we've had great
18 success, by trying to use experiment, spend a lot of
19 money on research, to find out what works.
20 And I hope we will do it, because we should
21 be responsible and include what's working for you.
22 DONNA ROMANO: And for the first time,
23 I think I can say that I deserve it.
24 [Applause.]
25 SENATOR SAVINO: Thank you, Donna.
30
1 This is a bicameral roundtable. We have a
2 member of the Assembly, Matthew Titone, is here on
3 the dais.
4 And up in the back, sitting back there, is
5 Assemblyman Mike Cusick; and I mention for a reason,
6 not just because he's from Staten Island.
7 But, Mike Cusick is the sponsor of the I-STOP
8 bill in the New York State Assembly, along with
9 Senator Andrew Lanza, who will probably be here
10 later, dealing with the prescription-drug problem
11 that we now have.
12 Many of you know that your doctors are
13 prescribing highly addictive, dangerous drugs;
14 that's your only choice. And that has spiraled out
15 of control, creating another problem in
16 New York State.
17 So we need I-STOP, and we Compassionate Care.
18 We're going to shift gears a bit now, to go
19 to industry professionals from other states.
20 One of the many questions we get about this
21 bill is: It's no longer if; it's when. And when it
22 does happen, what could it look like, what would it
23 look like, what should it look like?
24 So we're going to have, now, a speaker from
25 Gaia, which is a medical-marijuana producer in
31
1 Colorado.
2 I had the privilege of going to visit them
3 about a year and a half ago, to see what a
4 medical-marijuana facility could look like, what a
5 dispensary could operate like.
6 And, Meg Sanders, who is the CEO of
7 Gaia Plant-Based Medicine, is going to come down and
8 address us now.
9 [Applause.]
10 SENATOR SAVINO: Welcome, Meg.
11 MEG SANDERS: Thank you.
12 SENATOR SAVINO: Nice to see you again, and,
13 Charlie. Charlie's going to -- well --
14 MEG SANDERS: Yes, Charles is joining us.
15 Good morning, Senator Savino, members, and
16 ladies and gentlemen of the audience.
17 My name is --
18 SENATOR SAVINO: Meg, pull the mic a little
19 bit to you.
20 MEG SANDERS: Oh, sure.
21 SENATOR ROBACH: You can tip that up, too, if
22 you want to.
23 SENATOR SAVINO: There you go.
24 MEG SANDERS: My name is Meg Sanders, and I'm
25 the CEO of Gaia Plant-Based Medicine in Colorado.
32
1 We currently are fully compliant with
2 16 state and local medical-marijuana licenses in
3 four jurisdictions.
4 I'm also a mother of two, a formal
5 financial-compliance manager, and an active
6 volunteer in my community.
7 I was also the only industry representative
8 on Colorado Governor Hickenlooper's Amendment 64
9 Task Force for implementations of rules and
10 regulations for legalizing marijuana.
11 I am joined by Charles Feldmann, our
12 corporate council.
13 I welcome and appreciate this opportunity to
14 address the roundtable on behalf of Gaia, and to
15 give the perspective of a fully operational and
16 successful medical-marijuana company.
17 We've been in operation since 2010, and have
18 seen and experienced the evolution of Colorado's
19 medical-marijuana program.
20 Our company has also been working around the
21 country for the past three years on marijuana-reform
22 legislation at the local, state, and national level.
23 We have the benefit of seeing many models in
24 action, and are confident that the New York's
25 legislation will yield the best law in the nation,
33
1 as the best model to fit within the guidelines of
2 the August 29, 2013, Department of Justice
3 memorandum.
4 To that end, the most important parts of the
5 proposed New York law are seed-to-sale tracking,
6 limited licensing, legitimate medical need, strong
7 criminal and financial background checks on industry
8 owners and employees, and partnerships with all
9 government jurisdictions.
10 Seed-to-sell tracking is an essential tenet
11 that tracks a plant from its viability, directly to
12 being purchased by patients, using technologies such
13 as RFID, and through internal and enforcement
14 audits.
15 All medicines should be tracked back to its
16 original plant regardless of where it is in the
17 supply chain. This is a key element to preventing
18 diversion.
19 Limited licensing goes hand in hand with
20 tracking, because it is about enforcement, and the
21 ability for the state and local jurisdictions to
22 adequately and efficiently regulate and enforce the
23 laws.
24 A manageable number of registered
25 organizations is necessary and fosters cooperation
34
1 between regulators and businesses.
2 We have seen in states where there are
3 hundreds, or even thousands, of licensees, that
4 effective enforcement and regulation is difficult or
5 virtually nonexistent with the allotted resources.
6 Legitimate medical need or involving a doctor
7 who has a relationship with the patient is
8 imperative to ensure the integrity of the program,
9 and keeps medical decisions where they should be:
10 between doctor and the patient.
11 Strong criminal and financial background
12 checks assure the public, the state, and the federal
13 government that the participants in the industry are
14 respected and responsible business owners.
15 Having business persons involved as partners
16 in growing this industry means putting the patients
17 first, and not just legalizing people who are
18 currently conducting an illegal business.
19 Having the actual proven ability to grow
20 medical-grade marijuana is also extremely important,
21 as -- so much so, that it should be part of the
22 bill.
23 A medical-marijuana program without
24 medical-grade product for patients is a failure.
25 One thing this legislation does not fully
35
1 address is the importance of patients having access
2 to a variety of delivery methods and products to
3 suit their individual medical needs and personal
4 preferences.
5 While smoking or vaporizing marijuana remains
6 the most common choice by patients, and is
7 considered the quickest and, often, most-effective
8 delivery method, many patients will use a variety of
9 delivery methods, such as oils, tinctures, lozenges,
10 for example.
11 Which is why I'm here to strongly encourage
12 you to specifically allow for infused products
13 within the New York medical-marijuana program, in
14 addition to the more common and preferred combustion
15 or vaporizing of the dried product.
16 Infused products have been a staple for many
17 patients in medical-marijuana states throughout the
18 country, which we have seen firsthand.
19 Many who use our infused products do so at
20 night before bed, allowing them to sleep soundly
21 throughout the night without experiencing any
22 psychoactive effects.
23 They are also a preferred alternative for
24 those who choose not to smoke or vaporize the
25 product, or who do not need the immediate relief
36
1 that only comes from combustion or vaporizing of
2 dried marijuana flowers.
3 With regards to smoking or vaporizing the
4 dried marijuana flowers, this remains the most
5 common delivery method, and is important to not fall
6 into the trap of thinking of medical marijuana in
7 the same vein as cigarettes.
8 Commenting on the findings of
9 Donald P. Tashkin, M.D., emeritus professor of
10 medicine, and medical director of the
11 Pulmonary Function Laboratory at the David Geffen's
12 School of Medicine at UCLA, and the 30-year
13 U.S. government-sponsored study, McGill University's
14 Dr. Mark Ware concludes:
15 "Cannabis smoking is not equivalent to
16 tobacco smoking in terms of respiratory risk.
17 Cannabis smoking does not seem to increase risk of
18 Chronic Obstructive Pulmonary Disease (COPD), or
19 airway cancers. In fact, there is even a suggestion
20 that at low dose, cannabis -- at low doses, cannabis
21 may be protective for both conditions."
22 Ultimately, it is up to the patient and their
23 doctor to decide the best method of delivery, and
24 make medical decisions accordingly.
25 At this time, I would like to turn it over to
37
1 Attorney Feldmann, and I thank you again for your
2 efforts on this important piece of legislation, and
3 I look forward to answering any questions you may
4 have.
5 SENATOR SAVINO: Thank you, Meg.
6 [Applause.]
7 SENATOR SAVINO: Charles Feldmann is the
8 corporate counsel for Gaia, and he's going to
9 address some of the issues about security, and how
10 you set up an operation.
11 You don't have a prepared statement, though,
12 right, Charles?
13 CHARLES FELDMANN, ESQ.: No, I don't.
14 So I had more -- instead of sitting, hearing
15 a speech from yet another attorney, I'd love to
16 answer any questions about Colorado's model.
17 My background, I was a federal prosecutor,
18 and defense counsel, with the Marine Corps.
19 I was also a DEA drug-state task force
20 commander, and prosecutor, in Colorado.
21 So I come from a very strong law-enforcement
22 background.
23 Have worked actively with our local
24 law enforcement to implement a very robust
25 law-enforcement model in Colorado.
38
1 And, would love to share any of those
2 insights or backgrounds that would be helpful.
3 SENATOR SAVINO: Senator Robach -- well,
4 first, we've been joined by
5 Senator Ruth Hassell-Thompson from the Bronx and
6 Westchester.
7 [Applause.]
8 SENATOR ROBACH: I was just curious, Charles:
9 So -- just -- this is my perception.
10 So, you only hear about California and
11 Colorado all the time. That's all I see in the
12 media, but I believe there's, like, 19 or 20 other
13 states --
14 Correct?
15 CHARLES FELDMANN, ESQ.: Correct.
16 SENATOR ROBACH: -- that have this, and it
17 seems to be very well controlled, very well
18 enforced, very medical in nature.
19 And I think that's important for the record.
20 Is that pretty accurate?
21 CHARLES FELDMANN, ESQ.: I think the two
22 states you just mentioned show the dichotomy in the
23 industry between an unregulated state, California;
24 and a very, probably top of the pile right now,
25 law-enforcement-regulated state of Colorado.
39
1 Your bill, I think, will be the most-cutting
2 edge, if that passes, because it creates more
3 regulation and more control, which is, again, what
4 the federal government is looking for for states
5 passing medical-marijuana programs.
6 SENATOR ROBACH: I've had others just
7 suggest, anecdotally, that Connecticut has a very
8 good application of this that's worked, virtually,
9 seamless, with no controversy whatsoever.
10 Do you think our bill would be even above and
11 beyond that, as this?
12 CHARLES FELDMANN, ESQ.: It will be.
13 Connecticut -- once Connecticut is actually
14 implemented and rolling out, I would agree with you,
15 will be that robust enforcement action that they're
16 looking for.
17 Yours is very similar to that.
18 And, again, the distinction from Colorado
19 that is better, according to the federal government,
20 what they want to see, I think is that limited
21 licensing, that allows your regulators to really
22 keep a tight lid and control over who's producing,
23 where it's going, how you're tracking it, how that
24 medicine is getting from the grower to the actual
25 patient.
40
1 The federal government has told us they're
2 very concerned about diversion; diversion to other
3 states, to cartels, organized crime.
4 And that limited licensing scheme, that
5 seed-to-sale scheme, really helps your regulators
6 enforce that.
7 SENATOR ROBACH: Thank you.
8 SENATOR SAVINO: Any -- just a few questions
9 for you, Charles.
10 And I think your experience, not just in
11 Colorado, but as a former federal prosecutor and a
12 DEA agent, is critically important in helping us
13 create a program that will survive the scrutiny of
14 the federal government.
15 As you are aware, earlier this year, the
16 Governor issued an executive order, that he feels
17 that the State should move forward without
18 legislation; we should move faster, not slower. And
19 he resurrected a piece of legislation that was
20 passed in the 1980s, that we recognize as
21 unworkable.
22 But one of the things that it provided for,
23 was that we would obtain medical marijuana from
24 other states, so that it could be distributed
25 through 20 hospitals in New York State.
41
1 Could you speak to what's wrong with that
2 proposal, and why the federal government would not
3 allow that?
4 CHARLES FELDMANN, ESQ.: One of the major
5 points of law enforcement, on the federal side, and
6 a lot of what I do is analyze that evolving federal
7 position when it comes around medical marijuana, is
8 you cannot have interstate trafficking.
9 So you can't -- and you look at the Colorado
10 model, you can't come to Colorado and purchase
11 medical marijuana, and then take it home with you.
12 It's got to stay within that state.
13 So until something drastically changes on the
14 federal level, that model just will not work.
15 You'll fly in direct contravention of what the
16 Executive Branch has told us that they're going to
17 allow to happen.
18 SENATOR SAVINO: In addition, I believe one
19 of the proposals was that, for hospitals in
20 New York State to distribute marijuana that was
21 seized in drug raids.
22 Meg, as a producer of medical-grade
23 marijuana, do you believe that that is something
24 that patients should be exposed to?
25 MEG SANDERS: Not at all.
42
1 Our product is tested at multiple levels. We
2 use the highest quality control in producing a very
3 professional grade, medical-grade product.
4 I can tell you that drug dealers that are
5 growing this on the street don't necessarily offer
6 or exercise that same control.
7 And that would be my concern, is: What's in
8 that product? What pesticides might have been used,
9 which would be a huge concern to me, to deliver that
10 to anyone with a compromised immune system or any
11 type of diseased state.
12 SENATOR SAVINO: Senator Hoylman.
13 SENATOR HOYLMAN: Thank you.
14 Thank you for being here.
15 And thank you, Senator Savino, for organizing
16 this, and for your advocacy on this bill.
17 I wanted to ask about the specifics regarding
18 medical-grade marijuana.
19 Who actually regulates that, or does anyone
20 at this point, in Colorado, in terms of quality
21 control?
22 MEG SANDERS: Right now, the regulation is --
23 we're still working on that.
24 It's up to me, as a business owner, to test
25 my product. And it's up to me to vet who I'm
43
1 testing my product with.
2 And that is, right now -- we're seeing --
3 we're seeing that change.
4 Connecticut has a strong testing method, or
5 testing methodology, in their bill.
6 And I would encourage New York to look at
7 that, as well. You know, making sure that any
8 testing laboratory is sanctioned by the State, and
9 is being certified by the State, as far as their
10 testing methodology.
11 One of the largest pieces that's missing in
12 Colorado right now is a standardized test sample
13 that everyone's calibrating their machine with.
14 And that just doesn't exist.
15 SENATOR HOYLMAN: And do you foresee the
16 federal government stepping in at some point, the
17 FDA, in terms of monitoring quality?
18 MEG SANDERS: Well, I would say, as far as
19 the actual dried product, this is more of a
20 plant-based medicine, instead of a
21 pharmaceutical-based which would fall more under
22 FDA.
23 Plant-based medicine, right now, falls more
24 under supplement guidelines, and I would say that
25 that's more accurate.
44
1 As long as we're clear on our labeling about
2 what this does and does not do, and how it's been
3 tested, and the research that's been done in order
4 to say this is specifically for that, we can't do
5 that. We would have to be very clear about
6 statements on our labeling.
7 SENATOR HOYLMAN: Thank you.
8 SENATOR GRISANTI: Just a quick question:
9 The -- can you explain a little bit, so this way
10 it's clear to those that are trying to get educated
11 on this, that the plant itself, the genetic splicing
12 of the CBD chemical that's used in the oil to treat
13 other -- the seizures, the individuals from my
14 district that are actually coming down to Colorado
15 to get residency?
16 Can you expand on that a little bit, and what
17 the level of THC is on that side of the oils?
18 MEG SANDERS: Well, I think what's important
19 to realize, is that there are multiple aspects of
20 this plant that treat all types of ailments.
21 And, yes, there are some specific anecdotal
22 data that we're seeing in Colorado with regards to
23 high CBD, low THC, strains, but, there are multiple
24 ways that this plant helps people.
25 And as you've heard testimony, as far as the
45
1 different pharmaceutical-grade products that were
2 given to patients prior to their access to medical
3 cannabis, are far more dangerous opiates and other
4 types of drugs that I would say, when you look at
5 cannabis as an alternative, it's a much, much better
6 alternative.
7 It is important that we look at all the
8 aspects, and make sure that we are providing high
9 CBD strains and high THC strains.
10 There's many aspects of this plant that are
11 important, and we want -- we don't want to get lost
12 into picking the plan apart. There's lots of ways
13 that the plant helps many types of ailments.
14 SENATOR GRISANTI: And with the -- it's
15 important what you said, because -- and what
16 Senator Savino said, because you do not want to have
17 the type of marijuana that has been confiscated
18 through DEA agents in one state and brought over
19 here, because you don't know what's in it.
20 MEG SANDERS: That's correct. And there's no
21 way to -- you know, if you're just somebody picking
22 up various flowers from -- that have been seized in
23 a drug raid, to know what those strains are.
24 The way we grow, we know what our strains
25 are. We test every single plant, every single
46
1 batch, as far as what that specific strain has in
2 its component makeup, as far as THC, CBD, and many
3 other factors of the plant that are very important.
4 So that would be almost an impossible thing
5 to do. You would, basically, have to test every
6 single flower before you could give it to the
7 patient.
8 That's not very realistic.
9 SENATOR GRISANTI: Okay. Thank you.
10 CHARLES FELDMANN, ESQ.: And I would add to
11 that, looking at their organization, I mean, this is
12 a white-lab-coat laboratory-type facility, where
13 this is grown, versus coming from DEA.
14 I mean, we often seized cannabis in meth
15 labs, so I can't even imagine what that has been
16 subjected to or been around, that you're going to
17 treat a patient with.
18 SENATOR SAVINO: Charles, can -- I want to go
19 back to a -- more of the security issue, because a
20 lot of the questions that have come up from members
21 over the course of this legislative process, is, you
22 know:
23 How do you prevent diversion?
24 How do you create a secure facility?
25 What does a medical marijuana grow-house look
47
1 like?
2 And how do we track the plant: the
3 seed-to-sale?
4 And can you describe what goes into, you
5 know, running one, securing it, and making sure that
6 that product stays in the streamline that we want it
7 to?
8 CHARLES FELDMANN, ESQ.: First, it takes a
9 lot of financial resources.
10 So, they have built a warehouse fortress.
11 We use special-forces security companies so
12 that you cannot actually get into that. Every
13 aspect to that warehouse has a camera on it. And
14 I mean, "every aspect."
15 It is more regulated than the alcohol or
16 gaming industry.
17 Our regulators have direct access to all of
18 that video.
19 All employees, all investors, all owners,
20 anyone with a financial component to the industry,
21 has a financial, a criminal history, and a
22 moral-character background check on that.
23 So that's just the beginning of limiting
24 who's going to participate in this industry, so that
25 you end up with a medical-grade.
48
1 From there, there's transportation manifests
2 that the regulators get every time you're going to
3 move medical marijuana from the grow to an actual
4 dispensary. It's weighed, it's measured, at
5 numerous points.
6 And then every plant, from the beginning
7 until the very end, has an electronic signature
8 attached to it.
9 That, Meg can walk into her warehouse, or a
10 State regulator can walk in unannounced, and with
11 the push of a button, code every plant in that
12 warehouse: where it's going, where it's been.
13 And that's been revolutionary.
14 That is the exact opposite of what California
15 has, which is why California has so much federal
16 involvement, and other states don't.
17 SENATOR SAVINO: And can you -- sorry.
18 Can you -- describe the dispensary, because
19 that's one of the questions I've gotten from many
20 people: We don't want people being able to walk in
21 off the street like it's a candy store.
22 So if you -- I've been to Colorado, I've been
23 to Jersey. I've seen somewhat of a difference
24 there.
25 But if you could describe for the members
49
1 what a dispensary looks like, and how you control
2 what goes on in the dispensary?
3 MEG SANDERS: Yes.
4 So our dispensaries have controlled-access
5 points.
6 So what that means is, prior to even being
7 into the area where there's medicine available, your
8 "red" card is -- your "red" card, which is your
9 patient card in Colorado -- is verified, along with
10 the picture ID, every single time you come in.
11 It's not, Hey, I know you now, come on in.
12 That's not how it works.
13 And then, once you're verified by our
14 front-office staff, then you're buzzed in to the
15 actual dispensing location.
16 At that point, our people behind the counter,
17 our consultants, would then bring your profile up
18 and ask you specific questions about, you know:
19 Do you have any concerns about medicine that
20 you received in the past? Or any question as far
21 as, how -- the effects that you had?
22 And then they would dispense prepackaged
23 medicine to you, that then is -- and that medicine
24 is in child-proof containers. It's then put in a
25 sealed bag, with your receipt, and then you're
50
1 off -- off you go outside to -- of the dispensary.
2 And all of this is done on camera, again,
3 which is kept -- this is one thing that we have to
4 do in Colorado, we keep all of our video for 40 days
5 so it can be reviewed at any time.
6 And that's part of our internal process, as
7 well as the state regulations.
8 SENATOR SAVINO: Yeah, that is pretty good.
9 Oh, one final question: As you know,
10 Colorado has made a lot of news on the marijuana
11 policy, yes, because of the change in the legality
12 of recreational use.
13 But, you know, people who are opposed to
14 marijuana use, whether it's recreational or medical,
15 often cite that if we allow people access to
16 marijuana, we're going to see an increase in DUIs
17 and DWIs.
18 Has that manifested itself in Colorado?
19 CHARLES FELDMANN, ESQ.: You know, I would
20 say the opposite of that.
21 It's funny that we just have that question,
22 because I was speaking to one of our local sheriffs,
23 a staunch Republican. He and I were both part of
24 the failed War On Drugs, as drug task-force
25 commanders.
51
1 And he just commented, he was like, "I wish
2 I had evidence to support, you know, my initial
3 position against medical marijuana." But he says,
4 "I've got something. I've seen no increase in any
5 sort of criminal activity."
6 Whether it's juvenile diversion, whether it's
7 DUIDs, we just have not seen any of that growth.
8 And, again, would I attribute that, not to
9 just luck, but a very strict regulatory model. We
10 really control it.
11 Our regulators would tell you it's more
12 controlled than the gaming industry, which, as
13 everyone knows, is as strict as it gets.
14 SENATOR SAVINO: Thank you.
15 Assemblyman Titone.
16 ASSEMBLYMAN TITONE: Thank you, Diane.
17 You had mentioned going to the dispensaries,
18 that the patient is asked several questions.
19 Is that mandated, those questions, that
20 dialogue?
21 MEG SANDERS: No, it's not mandated at all.
22 It's just part of our customer-service experience.
23 We want to make sure that if a patient has
24 any questions about any of our products, that they
25 get as much information as possible.
52
1 And then, that way, they're also able to
2 interact directly with their doctor, as far as any
3 specific questions they have on strain availability
4 or delivery methodology; and, so, you know:
5 Should I use a tincture?
6 Should I use a lozenge?
7 Should I vaporize the product, or should
8 I use an oil?
9 Those are many aspects of each product line
10 that you want to explain.
11 ASSEMBLYMAN TITONE: It's impressive to me,
12 because I think about me just going to, you know, my
13 drugstore, you know, a big-box store, and the
14 question I get is, you know, "What's your
15 insurance?" And there's no dialogue.
16 So I was just wondering about that, whether
17 it's mandated or not. And it seems to be an
18 important dialogue that -- whether pharmacists or a
19 dispensary should have with a patient.
20 MEG SANDERS: I think patient education is a
21 critical element of any successful medical-marijuana
22 program.
23 And because there isn't this vast amount of
24 documented research that we can all point to, it's
25 really the dialogues that are creating the
53
1 awareness, and that needs to continue.
2 You've heard testimony today.
3 It's critical that we hear from the patients
4 how this medicine is helping them.
5 ASSEMBLYMAN TITONE: Thank you.
6 SENATOR SAVINO: Senator Hassell-Thompson.
7 SENATOR HASSELL-THOMPSON: Forgive me if my
8 question is a little off from where you've been
9 discussing, but, I'm going to be holding a series of
10 town meetings, because there is a concern among the
11 religious community, and some leaders, that
12 marijuana poses a dangerous threat in many
13 communities, because they believe it's a gateway to
14 other drug use.
15 What I've tried to -- what I've tried to
16 impart is that the focus should not be on
17 medical-marijuana use, but recreational.
18 But how do I combat that as an issue?
19 I mean, even in my -- even in my office
20 yesterday, discussing the planning of this, there is
21 disparity in thinking about whether or not this is
22 true or not true.
23 And I guess I'm asking, because I don't get
24 the opportunity to sit before somebody who's had the
25 kind of experience that you have, that might be able
54
1 to help us with that aspect as well.
2 CHARLES FELDMANN, ESQ.: That's a great
3 question, a great issue.
4 I think the real issue, when you talk about,
5 from a War-On-Drug perspective, and gateway-drug
6 labeling, it's substance abuse by youth.
7 And everyone agrees, from top to bottom, that
8 that's an issue that has to be addressed
9 continually.
10 To single out medical marijuana as the
11 gateway drug to substance abuse by youth, I just
12 think is unsupported by the facts, it's unsupported
13 by the culture -- the law-enforcement culture that
14 I was a part of.
15 So I think when you really educate people to
16 what's happening, and what is not happening, you win
17 that argument.
18 And, medical marijuana that we've seen in
19 very controlled regulatory models, where you're not
20 allowed to have diversion.
21 And, again, it's similar to how we regulate
22 the alcohol industry.
23 We do ID checks. We actually care about
24 keeping alcohol out of underaged drinkers.
25 And it will be the same philosophy and the
55
1 same routine that you'll have to implement with
2 medical marijuana.
3 So it's a very the analogy is very close to
4 how we regulate the alcohol industry.
5 But what I've seen, coming from enforcement
6 perspective, it is just inaccurate to single out
7 medical marijuana as this devil of a gateway drug to
8 youth.
9 It just turns out not to be that.
10 MEG SANDERS: May I add one thing do that?
11 SENATOR HASSELL-THOMPSON: Sure, please.
12 MEG SANDERS: One thing in Colorado that
13 we've seen, obviously, marijuana is on the front
14 page every single day.
15 The "Denver Post" now has an actual marijuana
16 editor, that, just about every single day, you'll
17 find an article related to the industry, or to the
18 medicine, or to recreational, or -- I mean, you name
19 it.
20 The point being, is that it's a topic of
21 conversation at dinner tables every day.
22 This -- the discussion point, the education,
23 is a key element to awareness, and to preventing
24 teenager or underage use of any type of controlled
25 substance, whether it be prescription drugs or
56
1 medical marijuana or drugs from the street.
2 That is one thing I can say.
3 It's just amazing to me the conversations
4 that are happening, and I think that's a very
5 important point to realize, is that, as an industry,
6 as a state, Colorado has done a very good job about
7 educating its residents about this drug, as well as
8 many other things.
9 SENATOR SAVINO: Assemblyman.
10 ASSEMBLYMAN TITONE: Just an observation:
11 I'm not aware of any studies whatsoever that
12 prove the theory of gateway drugs.
13 In fact, if we were to talk about gateway
14 drugs, one over the other, my point has been, and
15 I maintain it, until otherwise proven incorrect by
16 science, is that if you're going to take the whole
17 theory of gateway drugs, you need to start, first,
18 with the kid rolling down a hill to get dizzy, and
19 then you can say that that's a gateway drug.
20 So I don't buy into the gateway-drug argument
21 or debate.
22 Thank you.
23 SENATOR SAVINO: And even if it were a
24 gateway drug, then the question is: What's it a
25 gateway to? The legal, highly addictive, dangerous
57
1 narcotics that you can get from your doctor.
2 But, do we have any other questions for Meg
3 and Charles?
4 No? Great.
5 Thank you very much.
6 [Applause.]
7 MEG SANDERS: Thank you.
8 SENATOR SAVINO: We are going to now hear
9 from -- because I heard a couple of times, questions
10 about: How do you package it? How do you keep it
11 child-proof?
12 We're going to hear from Dean Petkanis, who's
13 the founder, chairman & CEO, of KannaLife. He's
14 going to talk about the business of -- science of
15 packaging, and labeling, how detailed it should be,
16 and how we can make sure we don't divert it.
17 Session?
18 Oh, we're competing with the session right
19 now, so people will come and go.
20 DEAN PETKANIS: Good morning, Senator Savino,
21 members of the Senate and Assembly.
22 I want to thank you, and the family members
23 here, and the patients in this room, and the
24 children, for allowing us this opportunity to speak
25 before the Panel.
58
1 By way of background, I am the chairman,
2 chief executive officer, of KannaLife Sciences.
3 My co-founder and partner, Thomas Kikis, is
4 sitting here to my right.
5 And, we are the only company in the
6 United States within the industry that has a license
7 with National Institutes of Health, Office of
8 Technology Transfer, for the 507 Patent, which are,
9 cannabinoids is antioxidants and neuroprotectants.
10 We do have several facets of our business,
11 including drug development and discovery underneath
12 that patent, and the standardization practice,
13 quality-control and assurance in packaging of
14 medical marijuana.
15 My background in the industry goes as far
16 back as 1992, excuse me, where I was involved in the
17 finance of a company that developed paclitaxel.
18 That's a generic drug for the treatment of cancer,
19 and that came from the bark of the Pacific yew tree.
20 So here we have the instance where a plant,
21 that is a medicinally-purposeful plant, can be used
22 for compassionate care and treatment of a variety of
23 different disorders and maladies.
24 It's probably the most potent
25 pharmacologically active plant known in pharmacopeia
59
1 that has not been released for medical use, and has
2 been federally restrained by the
3 Controlled Substances Act.
4 So I applaud you for your efforts, and the
5 State's efforts, in bringing forth a medium in which
6 the product can be used for medical purpose.
7 We started this company 4 1/2 years ago, with
8 the scientific approach of standardization and
9 quality control and assurance of packaging.
10 And part of that was to bring forth what the
11 chemical substances are within the plant -- thank
12 you -- and to also build a monograph that would help
13 doctors look at the plant and the chemical
14 substrates and ratios to which the chemistry
15 operates within the plant, and allay it across a
16 pantheon of disease indications.
17 And everybody here may know that there have
18 been a variety of different diseases that have been
19 targeted for use of -- medicinal cannabis is used
20 for, you know, including migraines, irritable bowel,
21 MS, intractable pain from chemotherapy and cancer
22 treatment, nausea, wasting, appetite suppression,
23 appetite improvement.
24 How does a doctor and a clinician understand
25 what the methodologies and prescription methods
60
1 should be used for in regards to prescribing medical
2 marijuana?
3 So we've developed a database, as well as a
4 packaging solution, for the industry, so that
5 participants, such as Gaia, which stands head and
6 shoulders above others in the state of Colorado.
7 We also have formulary operations in Colorado
8 and in Vancouver.
9 So, we've identified some of the market
10 participants, and their ways, means, and methods on
11 how they approach their standards and practices,
12 because it's very much what Meg Sanders had said, in
13 terms of practice.
14 The FDA will look at botanical medicaments as
15 nutraceuticals and supplements. And they look at it
16 on label, and on panel, for Code of Federal
17 Regulations, Title 21:
18 What are you putting on that package?
19 What does a patient know they're consuming?
20 How does a doctor know what the patient is
21 consuming?
22 And much of that, I think, should come
23 together in the form of traditional health-care
24 models and Western-medicine medicinal practices.
25 And if you bring the two together in
61
1 standards and practices, then you'll have, I think,
2 a robust market for the methods and means of
3 treatment using medicinal-cannabis [unintelligible].
4 We do have a sample of what we would call an
5 "early package solution" that was used by a market
6 participant in Colorado, a grower and dispenser.
7 On the front and the back are all of the
8 labeling requirements by the State, as well as a
9 body chart, to help doctors identify the hot spots
10 on the body, and the potency of the plant, so that a
11 doctor can actually get clinically involved, as
12 opposed to, just giving a patient a card to go and
13 into a dispensary, and have somebody in the
14 dispensary stick their hand in a jar, pull out some
15 bud or flower, put it in a bag and give it to a
16 patient.
17 So, 4 1/2 years ago we identified the needs
18 of a marketplace, and felt that we could much be a
19 participant in helping standards and practices,
20 certifying growers, certifying dispensaries,
21 certifying producers, in their goals towards
22 bringing medicine to the market.
23 And much of what you would find on that
24 package would be cataloged in a database -- in a
25 HIPAA-compliant database that doctors could go to,
62
1 and also use a soft clinical diary with their
2 patients on followup.
3 This will also help bring more knowledge and
4 experience to the marketplace in traditional
5 health-care models of treatment.
6 So, as a New York-based company, we're proud
7 to say that we're the only of our kind in the
8 country, with a license, but also with the
9 opportunity to help the State bring forth
10 adjustments, going forward, in compassionate care
11 and controls and methodologies that more align
12 themselves with the Western philosophical practice
13 of medicine, and also the FDA's "Guidance on
14 Botanicals" which was written in 2004.
15 In closing, I would pass on to Tom Kikas, if
16 he has any thoughts on the matter.
17 But as I look around the room, and I know
18 some of you here, you know, I have a real strong
19 burden for children. They rely so much on us and
20 our abilities to be sensible in helping them deal
21 with their maladies and disorders.
22 They didn't ask for this.
23 And my faith reminds me, in Matthew 19:14 and
24 Matthew 18:6, where the Great Physician talked about
25 children, and our responsibility in making sure that
63
1 they get what they need without any hinderance.
2 [Applause.]
3 SENATOR SAVINO: Thank you.
4 You're going to testify, too, or you're just
5 going to answer questions?
6 THOMAS KIKIS: No, I'm just going to answer
7 questions, I think.
8 SENATOR SAVINO: Okay.
9 First of all, thank you for that.
10 This -- I'm not sure if everybody can see
11 this, but one of the many concerns that have been
12 raised, and I think part of what is driving the
13 concern from people who have talked to you, is about
14 potential diversion, because I think there's a
15 misconception about what could happen with a
16 medical-marijuana dispensary, that you could go in,
17 I guess, buy it and have it in a paper bag, and then
18 it disappears.
19 So, I think it's very important that people
20 see these, this packaging that you use in your
21 dispensary, because it labels: The name of the
22 dispensary. The date it was packaged. The date it
23 expires. There's a bar code.
24 So -- and in addition, it's sealed.
25 Now, if I'm a patient in a state that has
64
1 medical marijuana, and I'm approved to use it, I'm
2 registered with the State, I have my "red" card, and
3 I need it for my particular condition, I'm only
4 going to get so much at a time; right?
5 DEAN PETKANIS: That's correct.
6 SENATOR SAVINO: And if I were, you know,
7 I guess, irresponsible enough to give it away, that
8 would have a problem -- I would have a problem then,
9 obtaining the medication that I need for my
10 condition?
11 DEAN PETKANIS: That's correct.
12 SENATOR SAVINO: And one of the ways we
13 control that is through these very strict packaging.
14 DEAN PETKANIS: That's correct, yes.
15 SENATOR SAVINO: You also have a patent,
16 don't you, from the National Institute for Health,
17 on how medical marijuana can treat traumatic brain
18 injuries. Is that true?
19 DEAN PETKANIS: Yes.
20 We're in two areas of encephalopathy right
21 now: One is on an exclusive basis. The other is
22 being driven right now on a nonexclusive basis.
23 We chose the disease pathology underneath the
24 patent that spoke to oxidated stress in the brain as
25 a result, ironically, to alcohol consumption and
65
1 ethanol toxicity.
2 Patients that have cirrhosis will develop
3 ammonia and ethanol toxicity in the brain. And it
4 has been scientifically, I would say, suggested in
5 an intramural research study at NIH, which is the
6 subject of the patent, that cannabinoids are
7 reasonably decent antioxidative stress relievers and
8 neuroprotectants.
9 So, we looked at the neuroprotectant side,
10 and glad to say that, in our preclinical studies, so
11 far, we've indeed assessed that we have some very
12 exciting drug discovery work on the way that
13 protects the brain.
14 Now we're moving into trauma, traumatic
15 injury, which is also a big subject now for families
16 that have children that play full-contact sports.
17 Concussive injuries is a serious issue now.
18 So the patent from -- oddly enough, the
19 United States government is the holder of this
20 patent, and we're a technology partner, with
21 National Institutes of Health have stepped up as a
22 commercially viable company to produce a drug
23 underneath that patent for patient use.
24 So, we chose those diseases.
25 It just shows the diversity of the means
66
1 cannabinoids in medical care.
2 THOMAS KIKIS: Actually, yesterday,
3 Sanjay Gupta has his -- a series, "Weed2," and he
4 actually mentions the patent, because it says: How
5 can the U.S. government have a patent on cannabis,
6 and then how can cannabis be illegal?
7 So he makes that argument.
8 And I think, you know, this is the actual
9 patent that we have. We have the 507 Patent, and
10 cannabinoids as antioxidants and neuroprotectants.
11 And I think, ultimately, it comes down to how
12 it's packaged, how's it seed-to-sale operations go,
13 per state.
14 And, I mean, I can have Dean speak to that,
15 actually.
16 DEAN PETKANIS: Well, I think Gaia hit it on
17 the nail -- the nail on the head, in terms of their
18 practices.
19 Colorado is now requiring RFID-chip
20 standards, so every plant and seedling is known from
21 the point that it's been planted, to the point of
22 harvest and delivery to the market.
23 We take it from that point in the packaging
24 solution that we offer for the participants in the
25 market.
67
1 But I did want to touch on something that's
2 really, I think, is interesting.
3 The detractors that talk about medical
4 marijuana not being proficient in use for patient
5 consumption are also the same detractors that don't
6 want economic growth or stimulate economic growth.
7 This is the second largest cash crop in the
8 United States. We have about 25 billion of illegal
9 product coming into this country untaxed.
10 I dare say that if I tried to bring mangos
11 home from South America, I'd be stopped at the
12 airport.
13 But in this instance, the packaging and
14 standardization of the domestic producers is
15 important, because it also offers jobs -- the
16 creation of jobs, a higher quality of skilled labor
17 in the scientific field, for testing -- laboratory
18 testing on site.
19 And, harvesting, the agricultural business in
20 the model, I think will be a boom for NYSERDA and
21 the state of New York, as well.
22 And when the Controlled Substances Act is
23 violated in on itself, and I think implodes on
24 itself, we will have, I think, a very interesting
25 pharmaceutical-grade naturopathic remedy that can go
68
1 across border.
2 I know Canada has just approved a health --
3 the Health Canada initiative.
4 So, if there are products that can be
5 developed in a very innovative nation that we are,
6 scientifically, I think we could make export
7 products out of the field of cannabis.
8 So, I think there's a multiplier effect
9 that's involved here, as well.
10 SENATOR SAVINO: Senator Hassell-Thompson,
11 you had a question?
12 SENATOR HASSELL-THOMPSON: I was -- I, like
13 you, was examining the packaging.
14 And, how does it come?
15 I mean, this is an empty packet.
16 DEAN PETKANIS: Correct.
17 SENATOR HASSELL-THOMPSON: Okay. Is it -- is
18 it, uhm -- I keep wanting to -- you know, like,
19 sometimes coffee is --
20 SENATOR SAVINO: Ground.
21 SENATOR HASSELL-THOMPSON: No, I'm not
22 talking about the grinding.
23 UNKNOWN SPEAKER: Vacuum-sealed.
24 SENATOR HASSELL-THOMPSON: Yeah,
25 vacuum-sealed.
69
1 Is it vacuum -- are those vacuum-sealed?
2 DEAN PETKANIS: I can take you through the
3 process.
4 We have a provisional patent that's filed on
5 the process method -- methodology behind us.
6 So, there's robotics equipment that will pick
7 and pack. At the same time, you have labeling
8 equipment. Then you have printing equipment for the
9 labels.
10 But on the robotics equipment, it depends on
11 how you're going to fill it.
12 You can fill it with flower, which has -- you
13 know, is fairly chunky, or you can fill it as
14 grinds.
15 In both cases, you could do a vacuum flush or
16 a nitrogen flush at the point of packaging, and bar
17 seal it, so you can create a hermetic seal within
18 the package.
19 Nitrogen flush is fairly -- it' fairly common
20 in other foods products that are packaged as such.
21 So you do have a bar seal at the end of it.
22 At the top will be a heat seal. And you can also
23 take away the notch there, or leave the notch there,
24 and have a resealable bag.
25 But, it's at the point of packing in the
70
1 robotics that you can add the hermetics of -- in
2 terms of hermetic sealing process, but doesn't
3 necessarily have to be.
4 SENATOR HASSELL-THOMPSON: Okay, I guess my
5 curiosity, like Diane says, it's almost
6 tamper-proof, which, you know, in looking at it
7 becomes very, very important.
8 Dosages, you know, I'm thinking about medical
9 doses.
10 So, I noticed that there's a coloration,
11 there's a brand. There is a, variety?
12 SENATOR SAVINO: Strains.
13 DEAN PETKANIS: Right, different strains.
14 SENATOR HASSELL-THOMPSON: Is it a variety or
15 a strain?
16 DEAN PETKANIS: Well, there are different
17 strains.
18 Anecdotally, the strains have these
19 wonderfully colorful names. Everybody goes and
20 assesses the value of the product based on the
21 strain name.
22 SENATOR HASSELL-THOMPSON: Right.
23 DEAN PETKANIS: What we are doing in our
24 monograph, is we're taking the chemicals in the
25 plant. We have a 32-point system, a testing system,
71
1 for third-party certification.
2 16 cannabinoids and 16 terpenoids are
3 assessed, along with the pesticide-control issue and
4 mold-control issues.
5 So, once all that comes into a database, it
6 gets filtered across a previous research white paper
7 that's been done on the use of cannabinoids for
8 medical treatment.
9 So, we'll probably be producing a more
10 accurate -- we'll be producing more accurate data on
11 the use, the medical use, rather than the anecdotal
12 model that says, Use bubble-gum cush for everything.
13 The number in sequencing that we provide on
14 the packaging is meant to provide doctors with an
15 idea where the hot spots on the body are right now,
16 but also to show doctors that, if they were to
17 prescribe something, by means of a treatment for
18 irritable bowel, you probably would not want to be
19 prescribing a high-grade sativa, which is one of the
20 phenotypes of the plant species.
21 You have three phenotypes:
22 You have a sativa, which is highly
23 psychoactive, very operative to the brain;
24 You have an indica, which is more operative
25 to the body;
72
1 And you have ruderalis, which is less
2 operative than either, but it's still used,
3 traditionally, in Russia as a means and method of
4 treatment, some -- more digestive.
5 So, ruderalis is closer to indica.
6 So with all hybrids of the strains that are
7 out, there one must look at the pharmacology of the
8 plant and try to break down the chemical components,
9 because, essentially, that's what drugs are
10 generally made from.
11 I have to go back to Taxol for a moment,
12 because it's important to note, when you're taking
13 plant-based medicines and you're synthesizing them,
14 ultimately, to make a full drug out of that that
15 goes through the FDA, those processes look at the
16 active ingredients in the plant, try to isolate and
17 purify them.
18 Similarly, we have a very complex plant here
19 in the flower, and doctors should know what the
20 ratio of those chemicals can and cannot do.
21 You don't want to have contraindications.
22 You don't want to give somebody who may be
23 slightly schizophrenic a high-grade sativa that
24 over-occupies the CB1 receptor. And in that
25 instance, you can have an abusive process of
73
1 medicine. Lack of knowledge.
2 So we look to improve on that. That's our
3 goal.
4 SENATOR HASSELL-THOMPSON: Okay, because that
5 was my curiosity, in terms of, when I look at the
6 package, for instance, I'm thinking about a
7 prepackaged medication, and I'm thinking of it in
8 terms of the doses. So the dose will be
9 50 milligrams, let's say.
10 But that's not what I heard you just
11 describing in terms of how medical marijuana works.
12 DEAN PETKANIS: It's a very good question,
13 Senator.
14 And I know I have some colleagues in the
15 industry that have formed solutions that already
16 have dosage regulation; however, that may not meet
17 the need of a doctor prescription. And,
18 administration is a challenge.
19 Say you have a patient that says, I just want
20 to smoke the flower, well, the doctor has to be
21 knowledgeable about weights and measures.
22 And based on what it's in that package, and
23 the potency of it, a doctor can say that
24 three-quarters of a gram will equal one cigarette,
25 and you need not smoke more than half of that
74
1 cigarette a day.
2 And that will give you the gram requirement
3 or the dosage milligram requirement, based of that
4 package, based on the cannabinoid structure.
5 And that's where, I think, the clinical
6 practice comes into play. Doctors have to
7 understand weights and measures when they're giving
8 a patient a prescription.
9 They do it now, but tablets are already in
10 the prescribable form.
11 But that's the flower.
12 Then you have products that are made as
13 infused products or capsuled products, or flowers
14 that have been dried and ground and encapsulated.
15 Those already have a body of weight to them, where
16 they will have a milligram dosage as prescribed.
17 But that's another matter, I think, for
18 industry growth.
19 Right now, from what I understand today, that
20 everybody's talkings about just the flower.
21 SENATOR HASSELL-THOMPSON: Just the flower.
22 DEAN PETKANIS: Yeah.
23 SENATOR HASSELL-THOMPSON: Okay.
24 All right, because, you know, many of us in
25 the Legislature are conversant, I guess, with the
75
1 legislative side of it, but very few of us are at
2 all conversant with the kinds of questions that
3 we're asking.
4 So, you know, we're not just asking to fill
5 up time. We're asking because we really need to be
6 able to understand it, particularly if we have to
7 "sell it" to our colleagues in terms of getting
8 their support for it.
9 So, I appreciate you answering the questions.
10 DEAN PETKANIS: My pleasure to do so.
11 SENATOR SAVINO: Thank you.
12 [Applause.]
13 SENATOR SAVINO: Next -- there's been not a
14 lot of discussion about what it takes to actually
15 finance a medical-marijuana business; and, so, we're
16 going to hear from Jake Schrader, who's co-president
17 of Articulated Investors, to talk about setting up a
18 business, and what it would look like.
19 Then we're going to hear from Jason Pinsky
20 from the cannabis industry.
21 And then we're going to shift back to
22 patients.
23 Before we start, Dean, can I keep this? Or
24 is there --
25 DEAN PETKANIS: Yes.
76
1 SENATOR SAVINO: Yes? Thank you. I can show
2 it to people.
3 Thank you.
4 JAKE SCHRADER: Senator Savino, Roundtable
5 participants, and members of the audience:
6 My name Jake Schrader, and I am co-president,
7 along with Phil Gottlieb, of Articulated Investors,
8 a New York-based company that has been exploring,
9 researching, and recently investing in the
10 medical-marijuana industry throughout the
11 United States.
12 Prior to forming our company, I was a partner
13 at Cantor Fitzgerald in New York City.
14 I'm a born-and-bred New Yorker. I have never
15 lived anywhere else. I work here, and I am raising
16 my family here.
17 That is why I am pleased to support the
18 legislation that you have worked so hard at
19 crafting.
20 At Articulated, we have studied, researched,
21 and seen firsthand the medical-marijuana industry
22 and its associated parts, and we believe that the
23 New York program will be the best in the
24 United States should it become law.
25 As investors, and developers of support
77
1 products, and investors in existing businesses, our
2 discipline has always been to work to identify good
3 actors within the industry, and then apply our
4 capital in order to help them succeed.
5 Unfortunately, many states have programs that
6 are not nearly as thorough or well-regulated as what
7 New York is proposing; and, so, identifying the good
8 actors in those states can be very difficult, and
9 there are some states that we simply will not
10 consider working in.
11 With your legislation, New York will become
12 not only the state in which we live, but also one in
13 which we are able to work directly as opportunities
14 present themselves to us.
15 We see clearly that the framework you have
16 put together will allow for a tightly regulated,
17 controllable medical-marijuana program that benefits
18 the public health of New York and has safeguards
19 against diversion.
20 These are all integral to ensuring the
21 integrity of the program, and fall well within the
22 eight points as outlined in the August 29, 2013,
23 Department of Justice memorandum.
24 Further, the limited licensing model that you
25 have put forth will allow for adequate and efficient
78
1 enforcement and administration of the program by the
2 State of New York and the host communities.
3 The opportunities for economic benefit are
4 many. The State, the host communities, and
5 taxpayers stand to benefit, both from the new tax
6 revenues, and from cutting out the portion of
7 law-enforcement costs that is currently associated
8 with the thousands of New Yorkers forced to use the
9 black market to meet their medical needs.
10 In addition, thousands of direct and indirect
11 jobs will be created within the production
12 facilities and in the dispensing facilities, as well
13 as supporting them. These will comprise all types
14 of professionals; from cultivators, to executives,
15 accountants, lawyers, administrative, security,
16 marketing, digital media, researchers, and many
17 more.
18 In Colorado [laughing].
19 Forgive me.
20 In Colorado, a state with approximately
21 one-quarter of the population of New York,
22 12,000 direct and 8,000 indirect jobs were created
23 under the medical-only model.
24 We see economic opportunities in technology,
25 which Articulated is developing, to assist with
79
1 cultivation, monitoring, and control; in real-estate
2 investment and construction; in research and
3 development; and we are also exploring an investment
4 in a consulting company focused on the industry.
5 Allowing for multiple delivery methods in
6 addition to the cannabis flower, such as oils,
7 infused products, tinctures, creams, and more, to
8 suit a patient's needs will also give patients more
9 choices, and the ability to determine, with their
10 doctor, what is best for them.
11 And it cannot be overstated that this also
12 means more jobs and economic benefit.
13 While the economics alone are compelling,
14 that is not the reason we got involved with this
15 industry, nor why I am here before you today.
16 The reason is, that the passaging of this law
17 will have a tremendously positive impact on the
18 health and well-being of hundreds of thousands of
19 New Yorkers for years to come.
20 The real opportunity here is to do well
21 financially by doing a really good thing for our
22 families and our neighbors.
23 Medical-marijuana patients will benefit from
24 not having to buy their medicine in the street where
25 they have no idea what they are getting or what
80
1 chemicals might have been used to produce that
2 product.
3 There is obviously no quality control or
4 safeguards for these patients who are at such a
5 difficult point in their lives that they are
6 currently willing to risk arrest for their
7 health care.
8 I, like everyone in this room, knows or knew
9 someone who could potentially benefit from using
10 medical marijuana.
11 In my case, my mother has long suffered from
12 sarcoma which has required a wide range of highly
13 invasive medical care. Most recently, she underwent
14 a major second major surgery on her scalp, and due
15 to the particular nature of her case, she is now
16 facing a course of aggressive chemotherapy.
17 While she has never been a cannabis user, she
18 is fully aware of what Articulated is set up to do,
19 and she has asked about the possibility of obtaining
20 some to offset the side effects of that chemotherapy
21 if they are as unpleasant as she fears.
22 She, too, is a lifelong resident of New York,
23 born in Queens, currently residing in a small town
24 called Philmont.
25 And it is with absolute conviction that I sit
81
1 here before you today and ask that she be given the
2 choice to use this medicine if it helps offset her
3 considerable suffering as she progresses through her
4 course of treatment.
5 [Applause.]
6 JAKE SCHRADER: I thank you again for the
7 opportunity to speak, and I ask again that you
8 please pass this legislation for the economic
9 benefits, for all New Yorkers who deserve another
10 option to discuss with their doctor, for my mother,
11 and because it is the right and compassionate thing
12 to do.
13 [Applause.]
14 SENATOR SAVINO: Thank you, Jake.
15 Thank you for, you know, sharing the personal
16 side of this, as well as the professional side of
17 it.
18 I do -- I would like you, though, to,
19 perhaps, for those who are listening on the live
20 stream, to kind of explain the difficulties of
21 raising money to begin to operate a
22 medical-marijuana program.
23 I don't think people really -- can't just go
24 to a bank and borrow money, because of the
25 restrictions by the federal government.
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1 So, if you could just speak a little bit?
2 JAKE SCHRADER: Sure.
3 You can't even go to a bank and deposit
4 money, let alone borrow it. But, that's probably a
5 larger topic.
6 At this point, traditional avenues of capital
7 are entirely shut off to the medical-marijuana
8 industry.
9 And that provides an opportunity for
10 unregulated pools of capital, such as Articulated,
11 to come in and become a de facto investment bank, or
12 provide capital, that, in any other industry with
13 this sort of growth.
14 And I think the political and, sort of,
15 tailwinds that seem to be behind the industry,
16 typically, banks would be falling over themselves to
17 become involved, but because of the federal
18 prohibition, they're simply not able to make loans
19 at this point, or investments.
20 SENATOR SAVINO: It sounds somewhat like, in
21 the garment industry, they still have them, but they
22 used to rely very heavily on factors, as opposed to
23 banks, where -- that that's where they would be able
24 to go to get a line of credit, or sell their
25 liabilities or their receivables.
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1 Is it similar to that?
2 JAKE SCHRADER: My grandfather is in the
3 garment industry, and he never really liked the
4 people who were his factors.
5 So I hope that we're providing a better
6 service than that, but the analogy is fairly true.
7 I think anytime the dynamics of a free market
8 are disrupted by a set of regulations or a set of
9 government intervention, then that free market
10 doesn't function as efficiently as it otherwise
11 would.
12 SENATOR SAVINO: Senator.
13 SENATOR HASSELL-THOMPSON: Thank you.
14 I heard you talk about the profitability of
15 the industry.
16 But it's interesting, I just left a press
17 conference before coming here, of people who are
18 deeply concerned about, as I am, the rise in the
19 numbers of cases of hepatitis C.
20 And -- but the good news is, for that
21 community, there is a cure.
22 But one of the gentlemen in the audience
23 said: You know, you're encouraging us to gain
24 access, and it's available, but it's not accessible
25 because the cost is prohibitive.
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1 Because he said that he was part of a
2 demonstration program, so he was able to access the
3 drug and the treatment.
4 We need to be sure that if we're going to be
5 doing this, that price does not become a barrier,
6 you know.
7 And I know that people say, Well, people flew
8 to Mexico, and they flew here, and they flew there,
9 to access it. They can afford to pay.
10 Well, most people can't afford to pay.
11 If it -- if that would -- you know, if that
12 were not the case, then so many more people would be
13 able to access.
14 We need to be sure that our participation,
15 while it -- certainly, none of us have a problem
16 with people making money -- I don't. I mean,
17 I don't have a problem with people making money.
18 I want them to be rich, and I want them to be
19 philanthropic with that richness; so, that's not the
20 issue.
21 But the issue here, is to ensure that we
22 don't create a barrier for people to access it once
23 we have created the market.
24 And I don't hear any guarantees, and I'm not
25 sure that there's a way.
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1 Yes, it's a free market, and I'm all for
2 that, but, I don't want us to have people become
3 disillusioned because we make it available through
4 legislation, but then it's not avail through cost
5 which we would then not control.
6 SENATOR SAVINO: That is such an important
7 question, and I can't believe we didn't put it to
8 Meg when she was here, so that's why I signaled for
9 her to come back down.
10 She can talk about the -- what does it cost?
11 What do patients pay? And how has the creation of a
12 legal medical-marijuana market affected the price of
13 marijuana in Colorado?
14 MEG SANDERS: I want to touch on a couple of
15 things.
16 This is an initial step. I mean, ultimately,
17 you know, we would love to see insurance, you know,
18 help cover the cost of medicine, especially
19 something as effective as medical marijuana.
20 This is a baby step.
21 So the first step is, let's make sure that
22 patients have access.
23 The second step is, obviously, keep pushing
24 the federal government to get on board with this
25 medicine, and make sure that insurance companies and
86
1 banks can help support this industry, and make sure
2 that everyone has access to it.
3 What I can speak to specifically, and I can
4 use my mother as an example, who's a -- you know,
5 she's a retired schoolteacher. She was on multiple
6 medications for arthritis and for high blood
7 pressure, and she became a patient last year.
8 And her medication, even though she has
9 insurance, and has a good pension from her many
10 years, 20-plus years, as a schoolteacher her
11 medication was still several hundred dollars a
12 month, and that's just for traditional pharma.
13 She's off of most of her medications, and is
14 using a topical, and a sublingual at nighttime, to
15 help her with her arthritis.
16 And the byproduct of it is, her
17 blood-pressure issues subsided, as well.
18 So part of the issue is that, in Colorado,
19 the cost of medical marijuana is probably the lowest
20 in the United States. We are very competitive
21 market.
22 The other part of this, as a responsible
23 business owner, we do allow for patients to have a
24 sliding scale. You know, we've made many, many
25 low-cost options available to people on fixed
87
1 incomes, to our veterans.
2 And we highly support and recommend that.
3 And that is one of our tenets, as business
4 owners, that we're able to offer reduced-price
5 product to patients that need it.
6 And believe me, there's many ways that we can
7 make that work in our business model, and I think
8 that that's important.
9 The other part that I want to touch on is,
10 this goes back to being able to actually use the
11 dried flower, which is probably the most economic
12 way to use the product at this point, in smokeable
13 form.
14 We often hear: Oh, this is smoking. It's
15 got to be bad.
16 Well, there are studies that are suggesting
17 that it's not. And vaporizing isn't always an
18 option. It's more of a -- it can be much more
19 expensive, as far as buying the oils and the actual
20 device to vaporize products.
21 So, by offering a range of product, you're
22 able to offer a range of prices.
23 But, also, by having responsible business
24 owners at the table, as part of their business plan,
25 showing how they're going to be able to offer
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1 low- and reduced-cost medicine to patients that need
2 it, I think that that's another critical part of how
3 we, potentially, help choose business owners that
4 are going to be potential licensees in this market.
5 And then just to circle back around, we are
6 finding that patients that are using medical
7 marijuana aren't having to use their prescription
8 drugs, which often much, much more than medical
9 marijuana costs.
10 SENATOR HASSELL-THOMPSON: Well, you know,
11 I appreciate that, but, you know, there's a
12 difference between "available" and "accessible."
13 And when we talk about treatment being
14 available, that's one set of dynamics.
15 But, I would like to hope that, in New York,
16 we would adopt the model that you are describing, to
17 ensure that, through a sliding scale, through many
18 of the programmatic designs that you named, that we
19 will continue to make it, not only available, but
20 accessible, because that's a major concern for me.
21 MEG SANDERS: It is, and I completely agree
22 with you.
23 And I might suggest, as part of the
24 application process, that might be part of the
25 questioning, as far as: How are you going to
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1 provide medicine so that it's accessible?
2 SENATOR SAVINO: And I think that's a
3 critical point that you raised, Senator.
4 One of the mistakes I think that was made in
5 New Jersey is, when they adopted the
6 medical-marijuana statute, adding in the length of
7 time it took them to actually implement it, they put
8 restrictions, by region, and they found, quickly,
9 that they were not going to be able to meet the
10 needs of the population.
11 So we have to be careful, as we do this, that
12 we don't put those limits.
13 There should be limited licensing, though.
14 We don't want them popping up everywhere, because
15 then you can't control it.
16 But we -- you know, New York is a very big
17 state with a huge diversity in population.
18 We need to make sure that product is
19 accessible, and also affordable, for the patients
20 that are going to need.
21 MEG SANDERS: I completely agree with you.
22 One other thing that I would add is, the
23 other importance of that is making sure that, when
24 you are selecting registered organizations to grow
25 this product, that they have significant experience
90
1 in the industry.
2 It is a unique plant. It's not like growing
3 a tomato. And growing indoors is a very challenging
4 environment to do this.
5 And, so, the experience helps ensure a steady
6 supply, which ultimately translates into
7 stabilization of price.
8 SENATOR SAVINO: Thank you.
9 SENATOR HASSELL-THOMPSON: Thank you.
10 MEG SANDERS: Thank you.
11 SENATOR SAVINO: Next we're going to hear
12 from Jason Pinsky from the cannabis industry.
13 [Applause.]
14 JASON PINSKY: Good afternoon.
15 SENATOR SAVINO: Good afternoon.
16 Is it afternoon already?
17 No, it's still morning; five to twelve.
18 JASON PINSKY: Good morning.
19 SENATOR SAVINO: It's afternoon somewhere in
20 the world.
21 JASON PINSKY: My name is Jason Pinsky. My
22 primary background is in technology.
23 I've been a cannabis consultant in medically
24 legal states and abroad since 1998.
25 I've recently come on board as CTO for
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1 United Cannabis Corp.
2 I've been a New York State resident most of
3 my life, and currently reside in Brooklyn.
4 I've also been a cannabis user, enthusiast,
5 and activist for over two decades, with a focus on
6 botanical extraction, sciences, and technology.
7 United Cannabis Corp. was founded to provide
8 leadership for the medical-cannabis industry by
9 offering patient-driven solutions.
10 Since 2009, our founders have successfully
11 served over 15,000 patients per year, and currently
12 cultivate hundreds of medical-grade cannabis
13 strains, including more than 15 unique CBD-dominant
14 varieties.
15 Our proprietary, full spectrum cannabinoid
16 program, Act Now, currently manages over
17 200 sponsored patients suffering from chronic pain,
18 drug abuse, inflammation, glaucoma, PTSD,
19 neuropathy, multiple sclerosis, fibromyalgia,
20 Chron's disease, seizures, epilepsy, paralysis,
21 autoimmune, autism, tumors, HIV/AIDS, and many types
22 of cancers, as well.
23 While we support CBD-rich medicine, we do not
24 support CBD-only legislation.
25 The endogenous cannabinoid system, named
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1 after the plant that led to its discoveries, is
2 perhaps the most important physiologic system
3 involved in establishing and maintaining human
4 health.
5 Endocannabinoids and their receptors are
6 found throughout the body and in the brain, organs,
7 connective tissues, glands, and immune cells.
8 In each cell and all tissues, the
9 endocannabinoid system performs different tasks, but
10 the goal is always the same: homoeostasis; the
11 maintenance of a stable internal environment,
12 despite fluctuations in the external environment.
13 Cannabis sativa, indica, ruderalis, and hemp
14 cultivars have been on our planet for over
15 35 million years. These plant species were one of
16 the first four plants on earth to reproduce via
17 airborne pollination methods.
18 As these plants spread throughout the globe,
19 they developed different compounds, including
20 cannabinoids, terpenoids, flavonoids, et cetera.
21 Cannabis sativa and cannabis indica created
22 over 800 landraces in this process and developed a
23 full spectrum of cannabinoids.
24 The genetic code for hemp and ruderalis
25 focused on survival traits and lacked the full range
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1 of compounds in cannabinoids compared to indica and
2 sativa.
3 Utilizing all of the chemical compounds in
4 cannabis secures the greatest probability of success
5 in medical research and application, which is why we
6 favor full-spectrum cannabinoid therapies over
7 CBD-only alternatives.
8 The Act Now program is a comprehensive,
9 full-spectrum cannabinoid-therapy program that
10 utilizes the entire cannabis plant, controlling
11 specific cannabinoid ratios, accurate dosing, and
12 multiple delivery methods.
13 The Act Now program is designed to help
14 patients manage their pain, appetite, sleep,
15 inflammatory conditions, neuropathic dysregulation,
16 mood, digestive disorders, and improve their overall
17 cognitive function.
18 This full-spectrum cannabinoid program was
19 helped -- was designed to help restore the
20 communication pathways in the central nervous
21 system, immune system, and correct deficiencies
22 within the endocannabinoid system.
23 Our research partners, Dr. Brent Reynolds and
24 Dr. Dennis Stenler [ph.], have concurred with our
25 findings that CBD-only therapies restrict the
94
1 plant's full potential and limits the medicinal
2 properties offered by cannabis.
3 We have documented hundreds of case studies
4 with before and after results which prove that
5 full-spectrum cannabinoid therapies are able to
6 reach a wider bandwidth of patient conditions.
7 The Act Now program was able to help Karen
8 reach a complete remission stage within 120 days.
9 Karen was diagnosed with metastatic cancer, with
10 tumors in the breast, bone, and liver.
11 The Act Now program helped Chrissy [ph.], a
12 parent and nurse, manage her 11-year-old daughter's
13 conditions, including autism, a constant state of
14 seizures, epilepsy, closed spinal bifida, and severe
15 hip dysplasia.
16 The Act Now program was able to help this
17 11-year-old girl reduce her meds down to only
18 one pill.
19 In addition, the program improved her
20 cognitive-function test results by 200 percent,
21 reduced her seizures by 99 percent, controlled her
22 autism, reduced her paralysis by 80 to 90 percent.
23 This was accomplished within five months of
24 utilizing the full spectrum of cannabinoids used in
25 the Act Now program, and might not have been
95
1 possible if she was restricted to CBD-only
2 medication.
3 The Endocannabinoid Research Group is a
4 multidisciplinary research group established in
5 1995, and based in the laboratories of several
6 institutes and the Italian National Research
7 Council, and universities of Naples and Salerno
8 area.
9 The subjects of the scientific research
10 carried out by this group are endocannabinoids.
11 Raphael Mechoulam is an Israeli professor of
12 medicinal chemistry and natural products at the
13 Hebrew University of Jerusalem in Israel.
14 Professor Mechoulam is best known for his
15 work in the isolation structure, elucidation, and
16 total synthesis of delta-9-tetrahydrocannabinol, the
17 main active principal of cannabis, and for the
18 isolation and identification of the endogenous
19 cannabinoids, an anandamide from the brain, and
20 2-AG from peripheral organs.
21 These two works of research have merely
22 opened our minds to the endless possibilities of
23 full-spectrum cannabinoid therapies.
24 Accepted delivery methods include inhalation,
25 digestion, sublingual, and transdermal applications.
96
1 Inhalation is a fast-acting delivery method,
2 allowing controlled doses of cannabinoids to enter
3 the bloodstream within 15 minutes, and has already
4 been proven to decrease Chron's disease by
5 52 percent.
6 The endocannabinoid system is also located in
7 our digestive system, and the receptors located in
8 our peripheral organs require interaction to
9 stimulate the corresponding receptors in our brain.
10 Sublingual, the platform for
11 GW Pharmaceuticals, offers the fastest delivery
12 method into the bloodstream to help manage pain.
13 In 2014, our product-development team has
14 developed proprietary isolation techniques for
15 accurately-dosed transdermal delivery methods via
16 our skin.
17 The combination of these delivery methods,
18 and others in development, help in standardizing the
19 delivery of full-spectrum cannabinoid therapies.
20 Just a little bit about us:
21 Our president and board chairman is
22 Ernest Blackman. He's' a horticulturalist and
23 entrepreneur with over 20 years of experience,
24 including 5 years in the commercial cannabis
25 industry.
97
1 Mr. Blackman is currently an owner and master
2 grower at River Rock, Colorado, and is responsible
3 for the production, processing, workflow management,
4 just-in-time inventory control, security staff, and
5 training and recruiting.
6 Blackman has developed a proprietary grow
7 method, based on an organic standard, to aid and
8 stable chemical synthesis to limit side reactions
9 that diminish yield.
10 Tony Verzura currently runs day-to-day
11 operations of the Act Now program, patient-care
12 programs, product development, accredited training
13 protocols, QA, continued education, and oversees
14 marketing efforts.
15 Mr. Verzura has also been featured on "CNBC";
16 "Money Talk"; "Washington Post"; and publications
17 and culture magazine, "THC Magazine" and
18 "High Times."
19 Our research, medical, and
20 product-development team includes
21 Brent Reynolds, Ph.D.
22 Dr. Reynolds received his Ph.D. in '94 from
23 the University of Calgary, during which time he and
24 Sam Weiss discovered the existence of a stem cell in
25 the adult central nervous system, challenging the
98
1 centrial [ph.] dogma that the adult brain was unable
2 to produce new neurons.
3 He co-founded NeuroSpheres, Limited, where he
4 was vice president of research. And in 1999,
5 published the first report on transdifferentiation
6 of cells derived from one germ layer into functional
7 cells of another germ layer.
8 Professor Reynolds holds 16 U.S. patents
9 related to neuro stem cells, and his lab is
10 currently focused on the development of
11 stem cell-specific assays and manipulation of neuro
12 stem cells, and understanding the role that
13 solid-tissue cancer stem cells play in the tumor
14 initiation in metastasis.
15 Dennis Stenler served as the executive
16 director of the McKnight Grant Institute of the
17 University of Florida, from 2004 to 2010, and is
18 currently with Joseph Bangor Schantz [ph.],
19 professor of medical research in the department of
20 neurological surgery for the University of Florida
21 College of Medicine.
22 The major research goal of Stenler's program
23 was to develop stem-cell therapies for the treatment
24 of debilitating neurological diseases.
25 He has wide interest in the use of stem cells
99
1 for cell-replacement therapies in human neurological
2 disease; however, we've only begun to appreciate the
3 cell and molecular biology of these cells which hold
4 great promise for transplantation of other
5 therapeutics.
6 Dr. Stenler's also using new molecular
7 approaches to characterize novel developmental genes
8 involving neurogenesis: cell survival and cell
9 death.
10 The main strategy of these studies is to
11 exploit well-known approaches for gaining access to
12 signaling pathways that direct cell survival,
13 proliferation, and fate determination.
14 As gene-expression profiles are refined,
15 future approaches can rely on stem cells as vehicles
16 for gene therapy in neurodegenerative disease.
17 Dr. Stenler is funded by grants from NIH.
18 He has also previously mentored graduate
19 training.
20 [Unintelligible] Walton, Ph.D., is the senior
21 scientist at the Estel's [ph.] Research of America
22 located at the University of Chicago.
23 Last night, Sanjay Gupta aired Part 2 of his
24 groundbreaking documentary on cannabis.
25 As more data comes to light, we're finally
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1 seeing the mainstream media take a stance on
2 utilizing full-spectrum cannabinoids for a wide
3 array of conditions.
4 Gupta and Mechoulam refer to this as the
5 "entourage effect."
6 Think of it like this:
7 There are more than 480 natural components
8 found within the cannabis plant, of which 66 have
9 been classified as cannabinoids; those chemicals
10 unique to the plant, including
11 delta-9-tetrahydrocannabinol. There are, however,
12 many more, including CBG, CBC, CBD, CBDA, THC, THCA,
13 CBN, CBDL, CBL, CBE, CBT, and other miscellaneous
14 types.
15 Other constituents of the cannabis plant
16 include amino acids, proteins, enzymes, sugars,
17 hydrocarbons, acids, lactones, steroids, et cetera.
18 Mechoulam, along with our researchers,
19 believe that all of the compounds of the cannabis
20 plant exert a therapeutic effect more than any
21 single compound alone.
22 While science has not shown the exact role or
23 mechanism for all these various compounds, evidence
24 is mounting that these compounds work better
25 together than in isolation.
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1 In closing, I want to thank you for your
2 time, and encourage you to pass the
3 Compassionate Care Act this session.
4 SENATOR SAVINO: Thank you, Jason.
5 We've been joined by Senator George Maziarz
6 from Western New York.
7 [Applause.]
8 SENATOR SAVINO: I have one question, because
9 you detailed quite a lot of research information
10 there.
11 Has anybody from the New York State
12 Department of Health reached out to you, or anybody
13 else that's testified today in the industry, to talk
14 to you about any of the research that you have
15 available, how a medical-marijuana program would
16 work?
17 JASON PINSKY: I have not been contacted, but
18 I'm certainly available.
19 SENATOR SAVINO: Has anybody else who
20 previously testified?
21 No?
22 Thank you.
23 Thank you.
24 JASON PINSKY: Okay. Thank you.
25 SENATOR SAVINO: We are going to shift back
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1 to patients now.
2 We're going to have Dawn Carney from
3 Mount Vernon, and Susanne Truesdale from
4 Clifton Park.
5 Are you here?
6 Dawn and Susanne, are they here?
7 UNKNOWN SPEAKER: She'll be back.
8 UNKNOWN SPEAKER: They'll be back. They had
9 to step out.
10 SENATOR SAVINO: All right, so I'm -- then
11 I'm going to move forward to, we have a group of
12 veterans.
13 UNKNOWN SPEAKER: Susanne is here.
14 SENATOR SAVINO: Oh, okay.
15 The veterans, come down, and you'll be next.
16 So, Susanne Truesdale from Clifton Park.
17 Thank you.
18 SUSANNE TRUESDALE: Good morning.
19 SENATOR SAVINO: Good morning.
20 SENATOR MAZIARZ: Good morning, Susanne.
21 SUSANNE TRUESDALE: [Microphone turned off.]
22 For over five years, I have faced cancer
23 twice. I was first diagnosed in 2008, and then
24 again in 2009.
25 SENATOR SAVINO: Excuse me, Susanne.
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1 SENATOR MAZIARZ: Susanne, I don't think your
2 mic is on.
3 Could you just hit that button there.
4 SENATOR SAVINO: Press the button.
5 SENATOR MAZIARZ: Is the red light on?
6 SUSANNE TRUESDALE: Yes, now it is.
7 SENATOR SAVINO: Okay.
8 SENATOR MAZIARZ: There it is.
9 SUSANNE TRUESDALE: I'm Susanne Truesdale,
10 and I live in Clifton Park.
11 In 2008 I had a cancer diagnosis, and it
12 returned in 2010. It was in my lymph nodes and it
13 was a very serious illness.
14 And through -- over two years of time post
15 that diagnosis, I suffered greatly. I had many,
16 many issues as a result of radical surgery,
17 radiation treatment, and chemotherapy treatments.
18 I developed over a two-year period many new
19 conditions, illnesses that I now had to manage, and
20 I was prescribed over a dozen different
21 pharmaceuticals which did not work for me. They
22 were ineffective, and they created further issues,
23 where my doctors wanted to prescribe additional
24 medications to manage the side effects of the
25 initial medications.
104
1 I had numerous issues, including an emergency
2 surgery -- actually, two emergency surgeries,
3 unexplained fevers, and hospitalizations, and
4 tremendous pain.
5 As a result of my radiation treatment, a year
6 later, I developed bilateral sacral fractures.
7 Basically, my sacrum was fractured.
8 And, the radiation treatment continues to
9 work for many months, and so it was a year later
10 after I had completed my radiation treatment that
11 I had sacral fractures.
12 And the treatments also weakened my bones,
13 and so at a very young age, I was diagnose
14 osteoporoses. And, I actually did have a rib
15 fracture that was very painful. And I was
16 prescribed very strong medications, hydrocodone.
17 And, you know, looking back on all of the
18 symptoms and suffering that I endured over
19 two years, I can't believe that, with all the
20 medications I could obtain, I could not obtain,
21 legally, medical cannabis. And I think that is a
22 downright shame.
23 We all know people who have had cancer.
24 I read a statistic the other day, 1 out of 4
25 people will be diagnosed in their lifetime.
105
1 So, no one is immune from illness, period.
2 And I support medical cannabis for a variety
3 of medical conditions, including cancer.
4 That's just my personal story, so that's why
5 I'm here today.
6 I thank you for co-sponsoring the New York
7 Compassionate Care Act, and I ask for immediate
8 vote, and passing this important legislation, so
9 that no more New Yorkers will suffer.
10 Thank you.
11 [Applause.]
12 SENATOR SAVINO: Thank you, Susanne.
13 SENATOR SAVINO: Next, we're going to move on
14 to, we have a group of young veterans:
15 Amy Reising, Leon --
16 LEO FEIT: Leo.
17 SENATOR SAVINO: Leo?
18 -- Leo Feit.
19 So who -- I have on my list, four.
20 So tell me who's here.
21 Amy?
22 AMY REISING: [Microphone turned off.]
23 Amy, Kunle, and Leo.
24 There was a typo. They're my advocates
25 [unintelligible].
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1 My name is Amy Reising, and I'm a Global War
2 on Terror vet.
3 [Microphone turned on.]
4 My background:
5 I was a lobbyist for the Boeing Corporation,
6 and I left in 2010 to pursue veterans legislation
7 when I was denied VA care, because I made too much
8 money under the Bush Statutes.
9 In Delaware in 2010, I got posttraumatic
10 stress put back on the bill.
11 And I thank you for co-authoring this bill,
12 and using the Delaware legislative piece. That is
13 actually my piece.
14 So I started Veterans for Alternative Care
15 here in New York State, out of Ithaca/New York City.
16 And, we have an awesome studio and garden where we
17 do a lot of occupational therapy and
18 transformational healing from our war wounds.
19 And I am here today to talk about
20 posttraumatic stress, traumatic brain injury, and
21 limb loss due to action, for -- obviously, for
22 cannabis, and how cannabis can help.
23 And I was paying attention earlier when we
24 were talking about CBD-only legislation.
25 And I know that there have been some concerns
107
1 in New York State about CBD-only.
2 And I think, also, like others have
3 mentioned, it's a very wrong move to have a CBD-only
4 state or -- and -- to Senator Ball's statements
5 about inhaling, and being concerned about smoking,
6 I think, you know, for people with limb loss,
7 especially CBD ointments and different tinctures are
8 very helpful for them.
9 And I think that, for us, as veterans, so
10 many veterans are getting addicted, like you said,
11 to opiates and different pharmaceutical drugs.
12 And here we have our endocannabinoid system.
13 And when you have posttraumatic stress or you
14 go through an extremely situation, your body stops
15 producing, or doesn't produce as much, anandamide,
16 which is the chemical your brain makes that binds
17 your free endocannabinoids in your -- or, your
18 cannabinoids in your endocannabinoid system to your
19 CB1 receptors.
20 And for somebody like me, you know, I might
21 only be at 30 percent, where you might be at
22 100 percent; and, so, THC is actually the better
23 drug when it comes to your brain and function,
24 instead of CBD, and something like that.
25 So, like, for posttraumatic stress, you need
108
1 a better THC strain than a CBD.
2 And that's also, like, you know, something
3 that we talked about, and it's very disconcerting,
4 for a number of reasons, that people aren't really
5 taking veterans issues, and looking at cannabis as a
6 veterans issue, because these pharmaceutical
7 companies have multimillion-, sometimes
8 billion-dollar contracts, you know, with the
9 government.
10 And, for us, we have an opportunity, as
11 veterans, to come home and have some
12 transformational healing in gardens, and be able to
13 grow our own medicine, and have 100 percent -- a
14 360 program, if you will, where veterans can run
15 their own grow operation, and, you know, 100 percent
16 organic, everything else.
17 And then you could have transformational
18 healing, putting back, like, all of the trim or
19 whatever is left over of the plant matter, you can
20 turn it back into paper and make art of it.
21 And that's kind of what we do in Ithaca. You
22 know, we cut up combat uniforms and make paper, and
23 make new pieces of art out of acts of war.
24 And, so, that's something that we would
25 definitely love to do, is, like, add
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1 food-and-medicine forests to our garden,
2 essentially, out there, and be able to be
3 100 percent veteran-owned and -run, and everything
4 else.
5 Because what happens for us is, a lot of
6 these VAs, they've started putting their own wings
7 for Operation Iraqi Freedom, Operation Enduring
8 Freedom, and Dawn veterans, because -- especially
9 women, because we have experienced such traumatic
10 instances. And going in public, and especially
11 going to the VA, is very, very daunting.
12 And, for us, I know, like, the VA is not
13 going to want to handle cannabis.
14 And most people don't know that the VAs
15 already backdoor legalized cannabis through the
16 federal government.
17 The VA issued an edict in 2010 that said
18 every patient who is getting care in a legal state
19 could still get care if they tested positive for
20 cannabis, because, up until then, up until 2010, if
21 you tested positive for cannabis in your drug test,
22 they would deny you care.
23 And I'm a mother of a 6-year-old child. I'm
24 a single mother. For me, I can't go home and take
25 narcotics, because I still have my son to contend
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1 with.
2 And a lot of people haven't really thought
3 about single mothers and -- as being veterans, and
4 what that means for us, because, you know, are we
5 afraid to lose our children? Absolutely.
6 I've watched three personal, close friends of
7 mine get their children taken away from them due to
8 posttraumatic stress.
9 And this -- like -- especially, like, if you
10 give me a narcotic that is given to me by the
11 government, I can go home with that, legally.
12 But I still -- really, it's hard for anybody
13 to be under a narcotic and care for a child.
14 However, you know, it's illegal for me to
15 give myself care, and be able to care for my son.
16 And I feel like, for us, you know, in order
17 to stop the war, you know, essentially, we need to
18 stop the war, but we need to stop the War on Drugs
19 and the war on soldiers at home, because I'm
20 fighting this whole other war for care, when I've
21 already fought a war.
22 SENATOR SAVINO: Thank you.
23 You raised an important point, and I'm glad
24 you did, because I was going to ask about it.
25 Since many veterans receive their medical
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1 care from the Veterans Administration, which is a
2 federally-run health-care delivery system, what
3 happens if you are in a state that has medical
4 marijuana, and you go to the VA, do they deny you
5 treatment?
6 AMY REISING: See, if they were denying --
7 they were denying treatment to vets even after the
8 2010 edict. But in the last year and a half, we've
9 taken three states to court. Most recently was
10 Florida.
11 We testified to a Florida grand jury, we also
12 testified to an Arkansas grand jury, because, you
13 know, soldiers were being denied care in
14 right-to-use states. And, you know, obviously, the
15 only recourse is legal.
16 So, that's completely how we've taken on this
17 task.
18 And, moving forward, the government has to
19 give veterans care at the VA level, as well as,
20 like, receiving cannabis.
21 So, if New York -- like, for instance, if
22 New York State becomes a legal state, then the VA
23 has to administer care regardless, because of the
24 2010 edict. And if not, you know, obviously, you
25 take them to court.
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1 SENATOR SAVINO: What's the traditional
2 treatment plan for posttraumatic stress?
3 What is the traditional --
4 AMY REISING: Psychotropics. And there's,
5 like, a myriad. It's a Molotov cocktail.
6 And for us, personally, I know one person who
7 has overdosed on their medication. He died in 20 --
8 right after -- yeah, in December of 2011, he passed.
9 And that's just, like, one small instance.
10 You know, like, New York State has one of the
11 highest veteran suicide rates, as well as
12 active-duty suicide rates, in the country. And
13 I don't think people are taking that into
14 consideration.
15 And, also, New York State, because of the
16 Mountain Division at Fort Drum, you know, we have
17 these guys going on "the gauntlet," they call it;
18 those back-to-back tours. It's five tours, and then
19 you're done, for good.
20 But, a lot of them come home maimed. And we
21 have a huge population of limb-loss, like --
22 limb-loss survivors here in New York State that
23 could benefit from this bill; although, limb loss
24 and TBI haven't been articulated on it yet.
25 SENATOR SAVINO: Thank you.
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1 Do you have any questions, Senator Maziarz?
2 SENATOR MAZIARZ: No.
3 SENATOR SAVINO: Senator Valesky?
4 SENATOR VALESKY: No.
5 SENATOR SAVINO: Thank you.
6 SENATOR MAZIARZ: Thank you.
7 Thank you for your service.
8 [Applause.]
9 SENATOR SAVINO: Next we are going to hear --
10 Am I on?
11 I'm on.
12 Next we're going to hear from some parents
13 who brought -- come here with their children:
14 Kate Hintz, Missy Miller, and
15 Polly Vander Woude [ph.].
16 [Applause.]
17 SENATOR SAVINO: We only have the room until
18 1:00.
19 SENATOR MAZIARZ: At 1:00, they're going to
20 turn the heat on, so, we have to leave.
21 [Laughter.]
22 SENATOR SAVINO: Can we do something about
23 that? It's freezing in here.
24 MISSY MILLER: Hi, I'm actually -- I'm
25 Missy Miller. I'm going to go first because I have
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1 another meeting. Sorry.
2 Hi, I'm Missy Miller. I live in
3 Atlantic Beach, New York.
4 I'm here today because I am urging whoever is
5 still not supporting this Compassionate Care Act to
6 please pass this.
7 I have a son named Oliver, who's sitting
8 right over there, and he is the reason that this is
9 so important to me.
10 Oliver had a stroke in utero, and as a
11 result, he has a devastating brain injury. This
12 brain injury has resulted in many medical
13 complexities, among them, a severe seizure disorder
14 that has not responded to any pharmaceuticals or
15 traditional treatments.
16 He has endured many overwhelming illnesses,
17 hospitalizations, and setbacks in his young life.
18 He has struggled to overcome and emerge from
19 odds that were stacked against him.
20 Imagine trying to think, trying to focus on
21 something, trying to sit up or stand, while there is
22 an almost constant burst of seizure activity going
23 on in your brain.
24 He has had to fight all his life, often in a
25 haze of drugs used to try and control these
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1 seizures.
2 When not in a postictal or drugged-up state,
3 Oliver is very funny and silly and happy. He is
4 loving and affectionate and accepting of everyone
5 that he meets.
6 In his world, there is no such thing as
7 judgment or negativity. His world is full of
8 dedicated loving family and friends who believe in
9 him. He is the bravest, happiest person I know.
10 But, we are losing him, day by day, seizure
11 by seizure.
12 Each seizure causes anxiety.
13 I worry, which is the seizure that has the
14 potential to take him from us?
15 Will this be the one that starts the cluster
16 of status seizures that do not stop?
17 Oliver has lost milestones in the past few
18 years. He's lost skills because of these constant
19 seizures.
20 After years of struggling and fighting to be
21 able to pull himself up to stand, he can no longer
22 do this. Even sitting has become hard for him. He
23 often gets slammed down by drop seizures.
24 Just this past weekend, he had a seizure
25 while in the bath tub and slammed his head. It took
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1 myself and my 19-year-old daughter to try and keep
2 his convulsing body away from the sides of the tub
3 and to just keep his head above the water.
4 None of the medications, surgeries, or
5 treatments that we have tried have helped.
6 He is 14, and he is addicted to FDA-approved
7 and doctor-prescribed benzodiazepines and
8 barbiturates that don't work.
9 There is a strain of medical marijuana that
10 can help him, which we all know about, but we can't
11 have access to it because it's not legal here in
12 New York yet, and the Governor's very limited pilot
13 program will not provide the help that my son needs.
14 Passing the Compassionate Care Act in
15 New York will allow us to use this medical marijuana
16 to stop Oliver's seizures. It may very well save
17 his life.
18 Please look at my innocent child suffering
19 needlessly, and be the one that decides to make a
20 difference.
21 This should be a medical decision, not a
22 political one.
23 My son's doctors are fully in agreement that
24 he should be allowed access to medical marijuana.
25 Why does any politician have the power to
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1 stand in the way of that?
2 Oliver doesn't have the time to wait for this
3 to be held up any longer.
4 [Applause.]
5 SENATOR SAVINO: Thank you.
6 SENATOR MAZIARZ: We may have questions, so
7 why don't you stay.
8 If you don't mind. I mean, if you have to go
9 back, go.
10 MISSY MILLER: I have an appointment.
11 SENATOR MAZIARZ: Okay.
12 SENATOR SAVINO: Are you going to lobby a
13 member? More important, go convince them.
14 KATE HINTZ: Hi, my name is Kate Hintz. I'm
15 from North Salem, New York.
16 I'm here today with my daughter Morgan, and
17 her nurse Carol.
18 I have to apologize in advance, as I'm very
19 emotional today, having, last night, just watched
20 that CNN documentary. It featured so many families
21 that are just like mine.
22 I'm heavily burdened with the choice my
23 husband and I have made.
24 We have decided not to move and not to
25 relocate. We have decided not to obtain medical
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1 cannabis or attempt to obtain it illegally.
2 Instead, we have decided to stay and make
3 every effort to raise awareness about this
4 remarkable plant, and to fight to get this bill
5 passed here in New York.
6 We are taxpayers, we are homeowners. We
7 participate in government, we participate in our
8 community.
9 We have the absolute luxury to provide Morgan
10 with the best medical care available.
11 If we are not happy with a hospital, we
12 switch hospitals.
13 If we are not happy with our doctor, we seek
14 a second opinion.
15 Now, I'm aware that this is not the case for
16 most residents of New York, but the reason I mention
17 it is because, even with this luxury of choice and
18 option for Morgan's health care, it has failed to be
19 enough for her.
20 At only 9 weeks old, Morgan experienced her
21 first seizure. Luckily, we do live in one of the
22 best areas to receive state-of-the-art pediatric
23 care.
24 We headed straight to the hospital and hoped
25 for the best.
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1 Morgan had seizure after seizure. Days turns
2 into weeks, and then into months. We tried drug
3 after drug, and nothing helped.
4 Finally, after numerous tests, we got a
5 diagnosis. Morgan has Dravet syndrome.
6 Dravet syndrome is a rare and catastrophic
7 form of epilepsy for which there is no cure.
8 Part of the reason why Dravet syndrome is
9 such an ominous diagnosis is because it is highly
10 resistant to medications, and usually requires a
11 cocktail of at least two to four separate
12 medications for any hope of seizure control.
13 I am not embellishing when I say that doctors
14 have tried almost every medication and treatment
15 available.
16 In her short 3-year life, Morgan has been
17 prescribed over 10 different medications in an
18 attempt to control her seizures. These include
19 phenobarbital, Keppra, Trileptal, Lamictal,
20 Depakote, Klonopin, Topamax, chloral hydrate, as
21 well as high dose of steroids.
22 Many of these are classified as narcotics and
23 are highly addictive, with endless side effects.
24 None of these medications are FDA-approved
25 for use in infants or young children, and, none of
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1 these medications have worked.
2 The list of side effects is staggering.
3 Now at 3 years old, Morgan depends on a
4 feeding tube because she cannot eat by mouth. She
5 cannot sit or stand independently. She does not
6 speak. She cannot pick up a toy.
7 Even worse, she has been diagnosed with
8 kidney stones at only 16 months old.
9 At 20 months old, she was diagnosed with
10 ulcerative colitis.
11 And earlier this year, we noticed strange
12 physical changes happening to her body, and were
13 told that she has begun precocious, or early
14 puberty.
15 The line between side effects from
16 medications and her actual diagnosis is completely
17 blurred. We have no clue what is a result of
18 medications and what is a result of her diagnosis.
19 She requires a nursing level of care as
20 defined by New York State. She takes a cocktail of
21 11 medications and supplements 3 times a day; yet,
22 at her best, Morgan has only gone 4 weeks
23 seizure-free.
24 Each seizure causes more and more damage to
25 her brain, her heart, and her body.
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1 Two weeks ago, Morgan experienced her first
2 full-body convulsive tonic-clonic seizure lasting
3 approximately 5 minutes.
4 Just when we think things cannot get any
5 worse, they continue to do so.
6 For the most part, Morgan does not leave our
7 home. All services are provided to her by the
8 wonderful State of New York, including numerous
9 therapies via early intervention, and private
10 nursing via a care-at-home medical waiver.
11 Even with this care in place, I would equate
12 her quality of life to that of someone living in
13 palliative or hospice care.
14 This is no way for a 3-year-old to live.
15 Waiting for an inevitable seizure to occur
16 puts a heavy burden on myself, my husband, and
17 I regret to say we are no longer the once vibrant
18 New Yorkers we used to be.
19 My reason for being here today is simple:
20 We have come too far this year for this bill
21 not to pass.
22 I cannot continue to watch my child suffer.
23 I'm tired of bearing my personal emotional struggles
24 to people who refuse to educate themselves; instead,
25 applying blanket rationalizations about substance
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1 abuse and smoking.
2 This does not apply to suffering New Yorkers
3 with medical conditions.
4 Some Senators have told myself and other
5 mothers here today that they support my daughter,
6 and would do anything to help them; yet, they will
7 not support this bill.
8 These two statements simply cannot co-exist.
9 If you support our kids and you care about
10 the sick people in New York, you must support the
11 Compassionate Care Act.
12 It is time for our government to do the right
13 thing: to step forward, and to get this bill passed.
14 Thank you.
15 [Applause.]
16 POLLY VANDERWOUDE: Hello.
17 Senator Savino, and other Senators, thank you
18 so much for the opportunity to be here today.
19 My name is Polly VanderWoude. I live in
20 Larchmont, New York.
21 I'm here today with my 3 1/2-year-old
22 daughter Olivia, and her nurse Andrea, in support of
23 the Compassionate Care Act.
24 My daughter Olivia has something called
25 "Aicardi syndrome." There are less than
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1 1,000 diagnosed cases of this rare genetic disorder
2 in the United States. It's something we had never
3 heard of until it became the most life-changing
4 two words in all of our lives.
5 At 2 months old, Olivia had her very first
6 seizure. We weren't sure what it was at the time,
7 but we knew enough to get to the hospital very
8 quickly.
9 The next 24 hours were a blur of tests and
10 doctors and lab work.
11 When we saw Olivia's brain MRI, you did not
12 need an M.D. to know that something was very
13 seriously wrong.
14 There were large gaps where brain tissue
15 should have been. And she is completely missing her
16 corpus callosum which connects the left and right
17 sides of her body.
18 She -- we learned that her eyes had scarring
19 on each retina and she would be visually impaired,
20 globally delayed, and likely suffer seizures every
21 day.
22 Children with Aicardi syndrome have an
23 average lifespan of 8 years old.
24 She is, and always will be, dependent on us
25 and other caregivers to perform even the most basic
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1 daily tasks.
2 In other words, we were in the midst of every
3 parent's worst nightmare.
4 In the early days of the diagnosis, such as
5 Aicardi, your grief and agony over the loss of the
6 child you hoped to have balances out with hope in
7 modern medicine, that there will would be some
8 medication readily available to treat the God-awful
9 seizures that will not stop, and, somehow, your
10 child will end up on the higher-functioning scale of
11 a spectrum diagnosis.
12 I write about Olivia -- my experiences with
13 Olivia on a blog, and one of my early posts was
14 around Christmas, her first Christmas, in 2010.
15 I wrote that our greatest wish for Olivia was
16 to smile.
17 "Praying for smiles" became a common
18 catchphrase amongst our friends and family.
19 I believed it was only around the corner,
20 that something expected of a 6-week-old would be
21 within my daughter's cognitive and physical
22 capabilities; however, seizures and seizure
23 medications have stolen our daughter's personality
24 and development from us.
25 At the time when most parents experience this
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1 precious first, we were applying our baby girl with
2 the best medicine science had to offer.
3 In her short life, we have tried
4 10 mind-numbing medications, a restrictive medical
5 diet, and she has an implanted electronic pacemaker
6 for the brain, a vagus nerve stimulator.
7 Even still, the seizures have been
8 relentless.
9 Since she was diagnosed at 2 months old, she
10 has had no more than 14 days without a seizure, not
11 consecutive.
12 It's heartbreaking and shocking to me to even
13 say that.
14 Currently, she's having 3 to 5 clusters of
15 seizures every day, and they last anywhere from 5 to
16 15-plus minutes. It amounts to approximately an
17 hour or more of seizures every day.
18 In addition, the numerous medications that
19 she has tried come with the debilitating side
20 effects that have negatively impacted her health.
21 These include risk of permanent vision loss,
22 permanent liver damage, decreased muscle tone,
23 increased risk of breathing abnormalities, and sleep
24 apnea.
25 Olivia now takes medication because she
126
1 cannot swallow her own saliva. She's lost the
2 ability to eat by mouth, and is 100 percent fed via
3 a G-tube directly into her stomach.
4 Last year, she was admitted to the hospital
5 14 times because her body was too weak to fight off
6 the common cold.
7 We are realistic enough to know, that while
8 we can't change her underlying brain structure and
9 the limitations that puts on her abilities, but we
10 believe very strongly that a life free from the
11 daily toll of seizures could and should be possible.
12 This would be a huge improvement in Olivia's
13 quality of life, and we believe that that would open
14 up the possibility for more development.
15 Early on, my husband and I said, that helping
16 Olivia realize her full potential and giving her the
17 best life we could would be our goal.
18 Ironically, to do this, we moved to the state
19 of New York in 2012. We were living in Chicago at
20 the time, far away from family, and we wanted to be
21 closer to our family.
22 It was very important to us to be able to be
23 in driving distance of cousins and relatives, to
24 take her on vacations, because flying with her,
25 frankly, is extremely difficult.
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1 So we chose New York as our home state
2 because of the awesome services that the State
3 offers to people like my daughter.
4 The quality of her life has improved
5 tremendously while being here.
6 She's around people she loves.
7 We have nursing services and support that we
8 would never have gotten in the state of Illinois.
9 She goes to an amazing special-needs school
10 that she loves. It's the joy in her life.
11 And, we are in the process -- we bought a
12 home, and we are in the process of remodeling it
13 right now to make it fully handicapped-accessible
14 for her.
15 I cannot explain to you the guilt I feel
16 because I cannot physically go through another move.
17 I can't take her to Colorado.
18 I've spent the last year and a half
19 rearranging our whole life: the doctors, the
20 therapists, all of the services, are carefully put
21 in place and thought out.
22 Olivia's doctor does support this. She
23 would, if available, work in concert with us to give
24 her medical marijuana. She would love to see what
25 that would do for our daughter.
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1 Like other parents here today, I've been in
2 contact with families with the exact same diagnosis
3 as my daughter. They're in legal states and this is
4 working for them.
5 You know, through their bravery, and
6 pioneering this novel treatment for epilepsy, it
7 gives me hope, that I have not had in a very long
8 time, that this will offer Olivia some improvement.
9 And while I come here today advocating for
10 Olivia, I also come here today advocating for all
11 the families touched by epilepsy, and especially
12 those children who have yet to have their first
13 seizure; the child whose epilepsy diagnosis awaits
14 them and their families.
15 Today, medical marijuana is being sought as a
16 treatment of last resort; however, in the near
17 future, I hope the promise of medical marijuana for
18 epilepsy is realized and it can be started much
19 earlier in that child's diagnosis.
20 These children will not have to cycle through
21 the countless medications to get freedom from
22 seizures, and their parents and families will have
23 the joy of never wondering what would their child be
24 like if it were not for the damage the seizures
25 caused to their child's developing brain.
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1 New York is, at its core, a progressive state
2 on so many issues.
3 It's time for the Senate to listen to its
4 constituents and bring the Compassionate Care Act to
5 the floor to vote.
6 Children like Olivia do not have time for
7 politics. They are counting on you and your fellow
8 Senators to hear us here today, and take the
9 necessary action to bring this medical therapy to a
10 reality as quickly as possible.
11 My hope is that Olivia can enjoy more than
12 two weeks of her life free from devastating impact
13 of seizures, and I still hope and pray for smiles
14 for my daughter.
15 Thank you.
16 [Applause.]
17 Kathy Bent.
18 KATHY ANABO [ph.]: I first have to
19 apologize, because it was warm yesterday, so in
20 Syracuse, and my allergies kicked in.
21 So, I am so sorry.
22 Since we've been here, we've had
23 three seizures. And I say "we" because it is a
24 family affair. It takes mothers and fathers and
25 caregivers to wave the magnet, as Kaylee [ph.] has
130
1 VNS, or whatever needs to be done to care for
2 children.
3 So with that said:
4 My name is really Kathy Anabo [ph.]. I am a
5 devoted mother, loving to four beautiful children.
6 Kaylee, now 11, is the reason that I am here
7 today.
8 She, too, is born with Aicardi, so, you have
9 two of us sitting right here.
10 Anyway, I could have never imagined that such
11 exhilaration could have so quickly turned into
12 heart-wrenching pain. We would soon learn that
13 Aicardi is a rare neurological disorder, with
14 approximately 900 cases reported in the
15 United States.
16 It is a defect on the X chromosome, and has,
17 thus far, have been observed in females with, the
18 exception of males who have Klinefelter syndrome.
19 It involves a severe seizure disorder, brain
20 anomalies, abnormalities of the eyes, and many other
21 health-related conditions.
22 As I struggle with my words, and as
23 I struggle to find the right words, I do know that
24 what I can tell you, and that what has ruled our
25 life over the last 11 years, controlled our days,
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1 taken away Kaylee's growing years, and until now,
2 had shattered any and all hope for a normal life:
3 seizures.
4 "Seizures."
5 Allow me to share Kaylee's story with you.
6 She was born on August 20, 2002. We welcomed
7 a beautiful baby girl into our lives.
8 As the diagnosis quickly followed, we were
9 told that Kaylee would not live past one.
10 As tears flowed down my face and I held her
11 in my arms, I knew that there was nothing wrong with
12 her and that everything was right.
13 You see, Kaylee is our angel, she was sent
14 from heaven. Her soul is perfect.
15 As we questioned the many medical conditions
16 that would soon arise, we did learn that Kaylee is
17 on the severe side of the syndrome.
18 Characterized by the agenesis of the
19 corpus callosum, Kaylee has complete absence, which
20 means that the band of white matter connecting the
21 two hemispheres in the brain have failed to develop.
22 She has intractable seizures that range in
23 form, from generalized, to complex partial, and are
24 a mix of heart-wrenching grand mal, myoclonic,
25 tonic-clonic, atonic, and absence.
132
1 If that's not enough, she has
2 Nissen fundoplication with a G-tube. She has a
3 left-eye coloboma, total retinal lacunae, that is
4 quite specific to the disorder. And morning glory
5 syndrome, which is an optic-disc cortex anomaly.
6 Many doctor appointments brought many more
7 disappointments.
8 Drug after drug, month after month, risking
9 one bad side effect for another, the only thing that
10 remained constant were her seizures, and hundreds of
11 them.
12 She regressed in all areas, along with her
13 ability to sit, eat, laugh, and engage in her world.
14 Walking and talking and any day-to-day task became
15 far out of reach.
16 Like many moms and dads, I've watched
17 thousands and thousands of her seizures.
18 I have felt electrical charges ravage through
19 her tiny body. And as I hold her and tell her
20 "It's going to be okay," in the end, I'm only left
21 with, What can I do to help my child?
22 Until now, it all felt hopeless, like there
23 were no answers.
24 I realized that, sometimes, by losing a
25 battle, you find a new way to win a war.
133
1 Like so many, we have battled 20 to
2 30 seizure meds, homeopathic and holistic remedies,
3 the ketogenic diet, the vagus nerve stimulator,
4 cranial psychotherapies, and, of course, prayer.
5 Sad to say, in this battle no one wins, and
6 it's only a matter of time before seizure could take
7 her life.
8 As elected officials, you are all in
9 positions to serve.
10 I thank you for the many endeavors you endure
11 on a daily basis, the tough decisions that you make,
12 and, at oftentimes, the very thankless task that you
13 complete.
14 I ask you to listen to one of the greatest
15 needs that we have: it's the need to live.
16 As I quote Dr. Gupta: "We all need to be
17 reminded that a true and productive scientific
18 journey involves a willingness to let go of
19 established notions and get to the truth."
20 Time is of the essence. We can't afford to
21 wait another day, let alone another year.
22 We need the Compassionate Care Act now.
23 I don't want to waste my time or yours on the
24 many medical uses of the cannabis plant, as I know
25 you know; or the medical research that was performed
134
1 in the late nineteenth century, or the benefits to
2 our medical, agricultural, textile, and industrial
3 industries.
4 I do, however, want to remind you that access
5 to effective medicine and quality health care are
6 listed as fundamental rights in the United Nations
7 Universal Declaration of Human Rights.
8 Medical use is specifically allowed by the
9 single convention treaty.
10 It is cruel to deny sick and dying people
11 this effective medicine, and inhumane to punish
12 patients whose very quality of life depends on
13 access to cannabis.
14 With that said, right here, right now,
15 Americans across -- or, I'm sorry -- patients across
16 America are still victims of government
17 law-enforcement officials who are practicing
18 medicine without a license.
19 A recent article -- oh, I'm sorry. I don't
20 want to talk about Charlotte's Web, because you guys
21 already know about that.
22 Sorry.
23 There's a lot of misinformation and emotion
24 on this issue; however, in the end, stories of
25 promise have emerged.
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1 This is a state filled with loving, caring
2 parents who want what's best for their children.
3 Shouldn't they have the opportunity to decide
4 if medical marijuana, specifically, Charlotte's Web,
5 is the right choice for them?
6 If you were that mother or father, wouldn't
7 you want every option available?
8 As you hold your seizing child, I strongly
9 believe that you, too, would jump every puddle,
10 hurdle every river, or sail every ocean, instead of
11 wiping every tear that falls down your face, as you
12 watch and hold helplessly your child, and pray that
13 it's not going to be their last breath.
14 Thank you for the opportunity to be here
15 today.
16 I trust and believe, as you continue your
17 talks, meet with the people who have elected you
18 into office, listen carefully to the many stories
19 where hope is renewed, that you will do what is best
20 for New York.
21 But I promise you that if our voices are
22 heard today, your heart will rejoice, knowing, you
23 may have saved one more child from a sudden
24 epileptic death.
25 [Applause.]
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1 SENATOR SAVINO: Thank you.
2 Next we're going to hear from Joe Fontana,
3 the legislative director from UFCW Local 338, and,
4 Ed Pichardo, on behalf of the Worker's Compensation
5 Alliance.
6 [Applause.]
7 UNKNOWN SPEAKER: Before we start: Folks, we
8 are running a little bit late on time. We have
9 limited time for the room.
10 We definitely want to hear from everybody.
11 If you could maybe summarize your statements
12 to as little as possible, I think that would help
13 get us out of here reasonably timely.
14 Thanks.
15 SENATOR HASSELL-THOMPSON: And I just have
16 one quick question.
17 Is Jake Schrader still here?
18 JAKE SCHRADER: Yes.
19 SENATOR HASSELL-THOMPSON: Oh, okay.
20 And, Jason Pinsky?
21 SENATOR SAVINO: No, he had to leave.
22 SENATOR HASSELL-THOMPSON: I wanted his
23 speech, 'cause --
24 SENATOR SAVINO: We asked for a copy of the
25 PowerPoint that he had.
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1 SENATOR HASSELL-THOMPSON: Right, okay.
2 And I apologize, but I've got constituents
3 who are up here on education, so they keep calling
4 me outside to meet them, 'cause they came all the
5 way by bus this morning.
6 And just to be -- to spread myself around,
7 I had to jump out to talk with them for a few
8 moments.
9 And then, in 10 minutes, I've got conference.
10 So, I want to try to hear as many of the
11 speakers as I can, but know that part of the reason
12 those of us who are here, are here to support this
13 effort. And we just need to be well-educated and
14 well-informed, because we're going to get the
15 questions and you're not going to be here to answer
16 them for us.
17 And so, when we debate, these are the kinds
18 of questions and things that we anticipate that we
19 will get on the floor.
20 So I just appreciate your indulgence with us.
21 Thank you.
22 JOSEPH FONTANA: Thank you, Senators.
23 My name is Joe Fontana. I'm the political
24 director for Local 338, RWDSU.
25 The RWDSU is part of the UFCW. It's the
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1 largest council of the UFCW. And our local
2 represents over 19,000 members in the retail food
3 industry, drug/pharmaceutical store industry, and
4 other service industries in New York.
5 I'll try to shorten this up as best I can.
6 I'm just here to basically say: Local 338
7 proudly supports the Compassionate Care Act. We're
8 proud to be part of this effort.
9 The Compassionate Care Act will, both,
10 provide medical care for citizens in our state, but
11 it will also provide a positive economic impact.
12 We've head about the benefits of medical
13 marijuana, and the benefits really can't be argued,
14 so I'm not going to get into that.
15 But this legislation will create a highly
16 regulated industry that will create thousands of
17 middle-class jobs across this region -- across all
18 regions of our state. These jobs will involve
19 production, transportation, retail sales, of medical
20 marijuana.
21 Not only will this industry create thousands
22 of jobs, but it will also provide state and local
23 governments with millions of dollars in new tax
24 revenue.
25 As we continue this year's budget
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1 negotiations, I know you are aware of how important
2 these funds can be to maintain and enhance the
3 services offered across our state.
4 The UFCW, nationally, has organized over
5 4,000 medical-marijuana workers in the
6 United States. These workers are well-paid, receive
7 health benefits, and a pension benefit. They have
8 the protections of collective-bargaining agreement.
9 New York has spent hundreds of millions of
10 dollars to attract and retain businesses in our
11 state; and the passage of this legislation will do
12 just that.
13 I've had the opportunity travel to Colorado,
14 and met with medical-marijuana workers who are
15 members of the UFCW. These workers are no different
16 than any other workers in production and retail
17 facilities that we represent in traditional
18 industries. They want a middle-class job that can
19 provide them -- so that they can provide for
20 themselves and their families.
21 Passage of this legislation will improve
22 health care for patients and improve the quality of
23 life for their families, while creating thousands of
24 middle-class jobs; jobs that will allow people the
25 lifestyle that New Yorkers deserve.
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1 The new businesses that this legislation will
2 create, the products that those businesses will
3 produce, and the workers who are employed by them
4 will, together, produce millions in local and state
5 revenues.
6 It's time New York joins with 20 other states
7 in legalizing medical marijuana.
8 I just summarized, you know, for the sake of
9 time, but I did want to say, this is not just about
10 jobs.
11 The priority for Local 338 is the patients.
12 I don't know, I know Senator Savino knew
13 Steve Peznick [ph.], who was the predecessor in my
14 job.
15 Steve passed away last year from pancreatic
16 cancer. He was diagnosed, and within nine months he
17 passed away. He went from 220 pounds, down to,
18 I think he was 90 pounds when he passed.
19 And Steve -- you know, I remember Steve
20 telling me, about halfway through the struggle,
21 Steve said to me, he said: Joe, the biggest problem
22 is, I can't keep my strength up, I can't eat.
23 And, you know, I wonder if, you know, Steve
24 would still be fighting the fight if he was allowed
25 to eat and had the energy, and he was able to fight
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1 the battle from a stronger base, having the ability
2 to eat.
3 And the one thing we know is, this medical
4 marijuana will allow patients to go through their
5 chemo treatments, and allows them to eat and keep up
6 their strength.
7 And that's something, you know, that sticks
8 with me, Steve saying that to me. And I'm just
9 wondering how much that drug would have helped
10 Steve.
11 So, thank you.
12 [Applause.]
13 EDWARD PICHARDO [ph.]: Good afternoon.
14 My name is Edward Pichardo. I'm here in
15 place of my colleague Richard Winsten [ph.]
16 We're here on behalf of the
17 Worker's Compensation Alliance. It's a statewide
18 coalition that protects the rights of injured
19 workers.
20 I'd simply just like to say that, the WCA
21 supports the Compassionate Care Act, urges its
22 passage, and its ultimate enactment.
23 Thank you.
24 SENATOR SAVINO: Thank you.
25 Short and sweet, thank you.
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1 [Applause.]
2 SENATOR SAVINO: Do either of you have any
3 questions?
4 SENATOR THOMPSON: No, just a comment.
5 It's good to see you again, Ed.
6 EDWARD PICHARDO [ph.]: Yeah, nice to see
7 you, Senator.
8 SENATOR HASSELL-THOMPSON: We've worked
9 together on legislation in the past, and so I trust
10 all that experience will serve you well, in terms of
11 helping us to frame what's -- you know, we've talked
12 about the accessibility today, a little bit, to
13 patients, but, we also want to be sure that workers
14 receive appropriate accommodations in the workplace.
15 And how do you -- how do you define
16 "middle-class jobs"?
17 You keep -- I keep hearing the term
18 "middle-class jobs," as opposed to, what?
19 JOSEPH FONTANA: Well, you know, there's a
20 trend in New York. You know, job creation, you
21 know, starts with, you know, any job is considered
22 job creation.
23 Well, we don't look at it like that.
24 You know, low-wage, minimum-wage, jobs are
25 not middle-class jobs.
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1 SENATOR HASSELL-THOMPSON: Okay, so you're --
2 JOSEPH FONTANA: And, I don't have a
3 technical definition for you, but the truth is, the
4 jobs that the UFCW is providing are jobs where folks
5 are going to be able to afford a good living,
6 provide a better future for their children, have
7 pension benefits, have medical benefits.
8 And, you know, I can't put a dollar value to
9 it, but it's nowhere near minimum-wage jobs.
10 SENATOR SAVINO: Thank you.
11 SENATOR HASSELL-THOMPSON: Thank you.
12 [Applause.]
13 SENATOR SAVINO: Next we are going to hear
14 from Liz Dellureficio [ph.], Hillary Savoie [ph.],
15 and the Russo family.
16 How do you say your last name?
17 LIZ DELLEREFICIO: Dellureficio.
18 SENATOR SAVINO: Dellureficio.
19 LIZ DELLEREFICIO: Yeah.
20 Thank you so much, Senator Savino, and --
21 SENATOR HASSELL-THOMPSON: And you're
22 Italian?
23 LIZ DELLEREFICIO: My husband's Italian. I'm
24 Jewish; Schwartz.
25 Thank you so much holding this, and allowing
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1 us the possibility to speak.
2 I'm going to try to edit what I wrote.
3 I'm here to support my -- I'm here for my
4 daughter who is 17, and her name is Nika [ph.]
5 She began to get epilepsy when she was
6 5 months old. And, she's is 17, she still has
7 epilepsy. She can have as many as 800 seizures a
8 day.
9 That means one part of her body or not is
10 usually actively shaking. Those are the smaller
11 seizures.
12 She remains aware, and smiling and happy and
13 interactive while she's having these smaller
14 seizures that are not under any kind of control.
15 One time a week she has a large grand-mal
16 seizure, also known as a tonic-clonic, where her
17 whole body will shake violently for about
18 two minutes.
19 You wouldn't think that those two minutes
20 would create such a havoc for her life, but, they
21 do, because the recovery period from them, she needs
22 to sleep the entire day afterwards, and misses
23 school for the next two days. Takes it her three
24 days to recover from a grand-mal seizure, and this
25 happens week after week after week.
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1 You know, you see around you that many
2 families are in the same position, and we've all
3 tried many medicines. She's been on so many. And
4 she's on, you know, four right now.
5 She takes 25 pills of medicines a day.
6 She's a beautiful, wonderful person. She's
7 very interactive. She uses an augmentative
8 communicative device to speak, where she looks at it
9 and it goes off, because the seizures stole her
10 speaking.
11 So, we're hopeful for medical marijuana.
12 It comes in various forms. You've probably
13 heard of Charlotte's Web. It has such a small
14 amount of THC, so there's no high. It comes in an
15 oil. You don't smoke it. And it's not a gateway
16 drug because this is medical marijuana.
17 We are not for legal -- I am not for
18 legalizing marijuana. This is medical marijuana for
19 people who need it.
20 And this can -- this has been shown to stop
21 seizures through the evidence of several hundred
22 people who are in Colorado.
23 I don't want to have to be forced to move.
24 I have job. I don't think I can replace my job.
25 And, I just want to sort of end by saying
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1 that, the Epilepsy Foundation -- I want the quote
2 the Epilepsy Foundation.
3 They support the rights of patients and
4 families living with seizures and epilepsy to access
5 physician-directed care, including medical
6 marijuana.
7 Nothing should stand in the way of patients
8 gaining access to potentially lifesaving treatment.
9 If a patient and their health-care
10 professional feel that the potential benefits of
11 medical marijuana for uncontrolled epilepsy outweigh
12 the risks, then families need to have that legal
13 option now, not in 5 years or 10 years.
14 For people living with severe, uncontrolled
15 epilepsy, time is not on their side.
16 SENATOR SAVINO: Thank you, Liz.
17 Hillary.
18 HILLARY SAVOIE [ph.]: Hi. Thank you very
19 much for having me here today.
20 My name is Hillary Savoie. I am the mother
21 of a really spectacularly lovely 3-year-old daughter
22 who is adorable and funny.
23 She also has a long list of medical
24 diagnoses, including severe hypertonia. She has
25 failure to thrive. She's also fed with a G-tube,
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1 like many of the children you've heard from today.
2 And, she has a diagnosis of a very rare form
3 of intractable epilepsy known as
4 "PCDH19 female-limited epilepsy." There are about
5 200 diagnosed cases in the world, currently, with
6 this disorder.
7 It causes severe drug-resistant clustering
8 seizures that have a tendency to be resistant to
9 drugs. And if they are reactive to drugs,
10 eventually, to stop being reactive to whatever drug
11 treatment the child's on.
12 Ezmay [ph.] started having seizures at
13 10 months. At her worst, she had approximately
14 20 clear, obvious seizures in a day over a 24-hour
15 period. She would have a week relief, and then she
16 would be back to seizing again.
17 She also has a number of tiny, little
18 seizures that we don't bother counting because
19 they're probably in the thousands.
20 I'm not sure how many of you have seen
21 someone have a seizure, especially a child, but
22 I can tell you that I've seen thousands. And every
23 time my child seizes, and she turns blue and she
24 shakes, it doesn't get any easier no matter how many
25 times you see it.
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1 And I can tell you that I would do anything
2 to make her seizures stop, and give her an option
3 for a healthy and productive life.
4 Treatment of epilepsy is a little bit like a
5 toolbox. There's a bunch of drugs and they throw
6 them at you, and you hope.
7 You titrate the drug up, and you hope and you
8 hope and you hope.
9 In Ezmay's case, she's had several drugs that
10 didn't do anything to stop her seizures. She's had
11 several drugs that made her violently ill.
12 She's very tiny, she's failure to thrive.
13 And, one drug caused her to lose a pound in a week
14 and a half. She was 17 pounds at the time.
15 They have turned her into a zombie.
16 They have taken my child away for periods of
17 time. And some of them have worked, and then
18 they've stopped working.
19 We're very fortunate right now. We're on a
20 drug that has taken her seizures down to once a
21 month, to once every three months sometimes.
22 Although, like Morgan's mom was saying, my
23 daughter had her first tonic-clonic seizure about
24 three weeks ago.
25 So the drugs are helping, but they're not
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1 stopping all of the seizures.
2 And to give you an idea, the drug that she's
3 on is a benzodiazepine. She's on a dose that is as
4 high as we can possibly go for her age and weight.
5 To give you an idea of how high that is,
6 I know other children who've been on this drug, who
7 weigh 120 pounds, and weren't even half of her dose.
8 And it still doesn't control her seizures.
9 And, we also know that, all things
10 considered, it's probably going to stop working at
11 some point.
12 And I can tell you that, as a mom, I'm doing
13 everything that I possibly can to help my daughter.
14 I am seeking the best medical care that
15 I possibly can.
16 I'm willing to drive her three hours once a
17 month to seek the best possible medical care that
18 I can get for her.
19 I've started a foundation to raise money for
20 research into her disorder, since it's drastically
21 underfunded.
22 But I can't -- I can't legalize this option
23 for her. Only you guys can do that.
24 And, you know, I've lived in New York State
25 almost all of my life. I love this state. I own a
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1 home. My husband has a fantastic job here.
2 I brought him from abroad to live in our beautiful
3 state.
4 I started my foundation here. I received my
5 Ph.D. here.
6 I want to stay in New York, we want to stay
7 in New York, my family is here. But, I will do
8 anything that I need to do to keep my daughter safe.
9 And if that means that we have to go to
10 another state to pursue all available options, we
11 would.
12 And I'd really urge you to not put parents
13 like us in that kind of a situation.
14 So, thank you.
15 SENATOR SAVINO: Thank you, Hillary.
16 Mr. Russo.
17 MIKE RUSSO: [Microphone turned off.]
18 Hi, my name is Mike Russo.
19 This is my wife, Felicia; my daughter,
20 Antonella [ph.]; and this is my son, Anthony.
21 We've lived in New York State our whole
22 lives.
23 Anthony, at 8 weeks old, started having
24 seizures. We took him to the hospital, and we found
25 out, through EGs, that he was having over a
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1 thousand seizures a day.
2 We gave him several different medications,
3 just like they went through, injections, and
4 nothing's working.
5 We finally had one medication called "SABRIL"
6 that is controlling his seizures right now, but the
7 side effect of SABRIL is it can cause blindness.
8 But we still give to it him because it
9 outweighs the damages that the seizures give him.
10 But it's going to come to a point where, the
11 longer he uses it, the higher his chance of becoming
12 blind from this.
13 And it just -- we've seen a line about the
14 Colorado medical marijuana.
15 And as a child that has -- he has a gene
16 defect that causes his seizures: the STXBP1 gene.
17 And there's a child that has the same rare
18 disorder, that was probably is in worse shape than
19 Anthony, and they started using the medical
20 marijuana. And, the child now is starting to talk,
21 using his hands, crawling.
22 Now, Anthony, right now, he can't walk, and
23 they told us he's not going to talk.
24 But there is hope through this medical
25 marijuana.
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1 And, we're here for Anthony, to help him, but
2 also for the future Anthonys, because the biggest
3 thing is, to get the seizures under control as soon
4 as you can, to stop the damage that it could create.
5 Thank you.
6 SENATOR SAVINO: Anthony is very chatty.
7 I have a feeling that if he gets access to
8 treatment he'll be talking.
9 MIKE RUSSO: Yes, there's hope for Anthony.
10 Yes. Thank you.
11 SENATOR SAVINO: There's hope for all of your
12 children. There really is.
13 Yes.
14 [Applause.]
15 SENATOR SAVINO: Thank you so much.
16 Do you guys have any questions?
17 No?
18 Thank you.
19 We're going to shift slightly again, to some
20 medical professionals.
21 Lisa Kuprian [ph.], who is a registered
22 nurse;
23 Arielle Gerard [ph.], who is a current
24 medical student;
25 Then, Donna Schwier [ph.], who's also a
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1 registered nurse, and a patient;
2 And Bishop Michael Clarke who's a faith
3 leader and caregiver.
4 We are getting down to the end now.
5 Arielle?
6 ARIELLE GERARD [ph.]: Yes.
7 SENATOR SAVINO: Donna?
8 DONNA SCHWIER [ph.]: Yes.
9 SENATOR SAVINO: Is Lisa Kuprian here?
10 UNKNOWN SPEAKER: [Unintelligible].
11 SENATOR SAVINO: Okay.
12 What about Bishop Clarke?
13 No?
14 So it's just you two ladies.
15 DONNA SCHWIER [ph.]: [Microphone not
16 working.]
17 Hello, and thank you, Senator Savino, for all
18 your hard work.
19 And I want to thank the other Senators as
20 well for being here.
21 My name is Donna Schwier. I live out on
22 Long Island. I'm a registered nurse, and, I'm also
23 a patient.
24 In 2010, I was diagnosed with fibromyalgia.
25 And, a lot of people aren't too sure what
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1 that means, so I'm just going to talk a little bit
2 about my symptoms, and such.
3 Fibromyalgia is basically characterized by
4 chronic widespread pain throughout the body.
5 There's trigger points.
6 SENATOR SAVINO: I think that one is out. It
7 keeps going out.
8 DONNA SCHWIER [ph.]: Okay, we won't use
9 that.
10 [Working microphone in use.]
11 DONNA SCHWIER [ph.]: Okay, so it's
12 characterized mainly by chronic widespread pain
13 throughout the body, above and below the waist, and
14 on both sides of the body.
15 I can tell you that it's just a miserable
16 condition.
17 I am on disability. I've lost my nursing
18 career to it.
19 I go to pain management. I get injections in
20 my back. And, also, I get prescribed Percocets, and
21 I hate taking them.
22 When I smoke marijuana, it takes off the pain
23 in a different -- completely different way. It
24 relaxes me, relaxes my muscles. It improves my
25 mood. It improves the quality of my life, because,
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1 a lot of times, I can't do everything I need to do
2 through the course of the day: Taking care of my
3 apartment. It's hard to go get groceries, to do
4 laundry, and things like that.
5 I think that education is very important for
6 this bill. I think people need to really understand
7 the science behind medical marijuana.
8 And I also think that if you're -- you know,
9 if you're a senator, especially if you're a Senate
10 leader, I think everyone should at least be
11 interested and care about the science, and really
12 learn and be educated about it in order to form an
13 opinion.
14 And, you know, like, to heck with me. Just
15 look at one child in here. "One child."
16 Do we really need another reason after
17 looking at one child? I don't think so.
18 I used to care for children in similar
19 situations, so, it hits me in so many different
20 ways.
21 I'm in pain today, but, I come up to Albany a
22 lot, because I think this is really important, and
23 this bill needs to be passed this year. Not like
24 last year. This needs to go forward.
25 People can't be moving out of the state,
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1 risking the kids' lives, and, just, people need a
2 better quality of life.
3 This bill really needs to go forward this
4 year.
5 SENATOR SAVINO: Thank you, Donna.
6 DONNA SCHWIER [ph.]: Thank you so much.
7 SENATOR GRISANTI: Thanks, Donna.
8 [Applause.]
9 SENATOR SAVINO: Arielle.
10 ARIELLE GERARD: Hi, my name is
11 Arielle Gerard. I'm a first-year medical student at
12 Albany Medical College.
13 And just for the record, I speak today as an
14 individual citizen, and not as a representative of
15 Albany Medical Center or Albany Medical College.
16 I graduated from Albany High School, and I've
17 been a New York resident for several years, so, I'm
18 one of your voters.
19 As you all know, Governor Andrew Cuomo
20 recently decided to allow the prescription of
21 medical cannabis under the Olivieri Law of 1980,
22 allowing for experimental use.
23 And while this is a positive step for
24 patients, and increasing research is always
25 important, access to be limited to thousands of
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1 New Yorkers who could benefit from the use of
2 medical cannabis.
3 Sorry, I'm trying to move around 'cause
4 I know we're short for time.
5 More than 60 U.S. and international health
6 organizations support the use of medical cannabis
7 under the supervision of a physician.
8 Hundreds of doctors in New York support this
9 legislation.
10 Medical cannabis is supported by 88 to
11 89 percent of New York voters, according to a recent
12 Quinnipiac University Study, so, the support
13 transcends bipartisan divisions.
14 Cannabis is shown, by multiple case studies
15 and controlled scientific experiments, to alleviate
16 the symptoms of many illnesses and disorders, many
17 of which have been described today so I won't repeat
18 those.
19 There's also some research that has shown
20 that, in some cases, it might actually be able to be
21 used to suppress tumor-cell formation, but more
22 research needs to be done.
23 Cannabis has never resulted in death from
24 overdose, unlike other commonly accepted
25 medications, like codeine and morphine. It has a
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1 very low risk for dependence.
2 While addiction to cannabis is possible,
3 there is no way of distinguishing psychological
4 versus physiological addiction, and you can be
5 psychologically addicted to basically anything.
6 Cannabis is less addictive than nicotine,
7 alcohol, and caffeine, which I think is a very
8 important thing to note.
9 Withdrawal symptoms from physiological
10 addiction to cannabis are also extremely mild, and
11 involve fatigue and anxiety.
12 It's also important to remember that all
13 medications do have side effects. And the health
14 risks due to cannabis use are extremely minimal, and
15 can be avoided by avoiding severe chronic use, and
16 by using and researching alternative delivery
17 options to smoking, such as oral and vaporization
18 administration methods.
19 According to the Institute of Medicine's
20 1999 Medical Cannabis Report, except for the harms
21 associated with smoking, the adverse effects of
22 marijuana are within the range of effects tolerated
23 for other medications, which is an extremely
24 important point to note.
25 As was discussed earlier, I believe that one
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1 of the -- a large issue that everyone's facing is
2 worry that marijuana will lead to use of other drugs
3 through the gateway theory.
4 And, the gateway theory has never actually
5 been supported by science.
6 All research that has shown that it is
7 supported are co-relational studies. And as many
8 people learn in grade-school science classes,
9 co-relation does not imply causation, which, again,
10 is quite important.
11 Cognitive deficits with sensitive tests are
12 noticed with chronic use of cannabis. But, again,
13 these tests are extremely sensitive, and they might
14 not actually be indicative of normal functioning.
15 And, there's no brain atrophy caused by use
16 of cannabis if use begins in adulthood.
17 Oh, sorry.
18 In addition to the gateway-theory idea, the
19 reason why people can become -- come into contact
20 with other drugs is actually through use of
21 underground networks, which is how many people are
22 currently getting medical cannabis. And this
23 increases their chances of coming into contact with
24 other drugs, such as cocaine and heroin.
25 But, under this law, there will be a
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1 regulation of the medicine, and we won't have to
2 have this worry.
3 Current medications, such as dronabinol, also
4 known as "Marinol," are currently insufficient.
5 Dronabinol and Marinol are actually only THC, which
6 is only one of the cannabinoids found in cannabis.
7 THC without other cannabinoids can be
8 extremely anxiety-inducing.
9 Other cannabinoids, such as cannabidiol and
10 cannabinol produce many of the health effects of
11 cannabis, and these medicines are also felt -- the
12 effects are felt much more slowly and dosage is very
13 difficult to control.
14 As is explained, the full plant compound is
15 necessary in order to attain the entourage effect
16 which gives the full therapeutic benefit of
17 cannabis.
18 Used in conjunction with other medications,
19 it can actually prevent tolerance and addiction to
20 other medications, as well.
21 Under regulation and supervision by a
22 licensed medical professional, medical-cannabis
23 prescriptions can decrease the pain and suffering of
24 thousands of New Yorkers inexpensively and with
25 minimal detrimental health impact, especially in
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1 comparison to other common and accepted treatments.
2 This is a quality-of-life issue, and this a
3 fight for the right to medicine.
4 It is a matter of compassion, patience,
5 medicine, and science; not opinions, personal
6 morals, taboo, or politics.
7 Thank you.
8 SENATOR SAVINO: Thank you, Arielle.
9 We're going to send you over to the
10 Department of Health, and you can advise them. You
11 probably have more information than they do on this
12 subject right now.
13 [Laughter.]
14 ARIELLE GERARD [ph.]: Thank you.
15 SENATOR SAVINO: I'm not kidding about that,
16 either.
17 [Laughter.]
18 SENATOR SAVINO: Our next, and final panel,
19 are -- it's going to be a little bit of a mix.
20 Kira Coburn, Alexander Hardman, Dawn Carney.
21 And, then, when we get down to alternative
22 methods of delivery, we're going to have
23 Andrei Bogolubov, who's the executive vice president
24 of PalliaTech.
25 So, if all of you can come down, we can get
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1 everyone in, and we'll get out of here just a little
2 late, but we started a little late.
3 So who do we have?
4 We have Dawn, Kira, and -- is Alexander --
5 DAWN CARNEY: No, he's not here with us
6 today.
7 SENATOR SAVINO: Okay, then he's not here.
8 And then we have Andrei.
9 Are there any other patients or any other
10 parents that wanted to speak?
11 No?
12 Okay, this is it then. See?
13 Go ahead, Dawn.
14 DAWN CARNEY: Good morning, Senator.
15 SENATOR SAVINO: Now it's afternoon.
16 DAWN CARNEY: Good afternoon.
17 Thank you for having us here today.
18 My name is Dawn Carney. I'm from
19 Mount Vernon, New York. That's in
20 Westchester County. And, I've been diagnosed with
21 AIDS in 1992.
22 And, throughout those years, I call it a
23 positive journey, but it hasn't been so positive, in
24 a sense that, you know, with the medical and -- with
25 the medication, actually, because, in the beginning,
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1 we had to go through trial periods. You had to find
2 out what, you know, fits you.
3 And -- but within that, you know, I went
4 through a lot of, say, nausea, headaches, and -- and
5 not wanting to live. I mean, I didn't know if I was
6 going to be able to go through this for the rest of
7 my life.
8 And then it got to the point, in 2004, and
9 I started to suffer, you know, wasting syndrome.
10 And that's when the AIDS, when it can no longer eat
11 at the fatty tissue and start to eat at your
12 muscles, and, you, pretty much, deteriorate.
13 And that's where I was at.
14 And like I said, I was giving up on life, and
15 my mother said to me: Well, you know, there's
16 others. Your family loves you. You're being very
17 selfish.
18 And at that point, I was, like, you know
19 what? Well, let me just give it another shot, you
20 know, as far as with medication and...
21 So then the doctor still had to give me
22 some -- the medical marijuana for me, for my
23 appetite, to help me to eat. Because you still have
24 to have food in your system, you know, with taking
25 all these medications.
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1 So I've done that. And I can actually say
2 that I'm a 20-plus year survivor today. It's helped
3 me to live.
4 And, within going through that, you know, I'm
5 very well active, strong advocate in my community.
6 Also a board member with Vocal New York. I sit on a
7 [unintelligible] steering committee; I'm a voting
8 member.
9 In other words, this has given me a life
10 back.
11 And, I advocate on Compassionate Care Act,
12 because there's many people in my community that's
13 newly diagnosed with HIV and AIDS, and that may have
14 to go through the same journey that they wouldn't
15 necessarily have to, if we just passed the bill, the
16 Compassionate Care Act.
17 So I strongly support the Compassionate Care
18 Act.
19 And I hope that you will, and everyone else.
20 Thank you.
21 SENATOR SAVINO: Thank you, Dawn.
22 One question: You said your doctor helped
23 you get --
24 DAWN CARNEY: I was on Marinol.
25 SENATOR SAVINO: Oh, Marinol.
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1 DAWN CARNEY: Right.
2 And I heard the young lady before me, when
3 she was speaking about, you know, the treatment of
4 that. And, you know, because it doesn't work for
5 everyone, you know.
6 It had an effect on me. It did help
7 somewhat, but it's nothing like marijuana, you know.
8 And I have smoked it, and it has helped more
9 so in helping with my appetite.
10 But, I would rather have it medically, as
11 opposed to me going out in the street to get it.
12 And even today there's, sometimes, I still go
13 through ups and downs with the appetite, and -- you
14 know, but it's not as bad as it was.
15 So -- and, I'm doing much better.
16 Thank you.
17 SENATOR SAVINO: Thank you.
18 Thank God for that. Knock on wood.
19 Kira Coburn.
20 KIRA COBURN: Hi, I'm Kira Coburn. I'm 19,
21 and I'm from -- I was born in Upstate New York.
22 I've lived all over the state. And I currently live
23 in Manhattan.
24 And I have a bunch of different conditions:
25 neurological and autoimmune. And, also, one of the
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1 most harder to treat ones that I have is called
2 "reflex synthetic dystrophy."
3 And what it is, is a degenerative nerve
4 disease that causes -- it causes different symptoms
5 for different people, but, it causes, for me,
6 chronic pain and muscle spasms and, like, atrophy to
7 my legs.
8 And, I've had a lot of surgery. And, like,
9 I've taken a lot of pain medication.
10 Like, even to this day, I'm 19 years old.
11 I shouldn't have to be on, you know, all the
12 morphine and stuff, just to be able to walk.
13 And when I was younger, when I was first
14 diagnosed when I was a kid, I was -- it got bad to
15 the point that I was in a wheelchair, and I was told
16 that I was never going to be able to walk again.
17 And, so, that was -- you know, that was my
18 life.
19 And -- but when I got a little older,
20 I smoked pot for the first time, and I just stood
21 up. Like, that is incredible.
22 Like, I was told I was never going to walk
23 again. And, like, I'm standing.
24 And to this day, I know I'm using a cane,
25 but, the fact that I'm even walking is beyond, like,
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1 amazing, and miraculous. And it's due to the
2 cannabis use.
3 And it's definitely -- it needs to be -- we
4 need to have safe access, because even though
5 I have -- you know, I access it and I get it,
6 I would much rather be in a professional, you know,
7 safe setting.
8 And especially when you're in pain
9 management, you can't even, like, mention cannabis.
10 You can't mention it, because then your whole
11 treatment plan gets, like, eradicated, and you can't
12 continue any of the treatment plan.
13 And it's just very important. It needs to
14 be, you know -- we need to have safe access.
15 And it's -- thank you.
16 SENATOR SAVINO: You're absolutely right, we
17 shouldn't have patients placing their liberty in
18 jeopardy, as well as their health.
19 Absolutely right.
20 And, finally, Andrei Bogolub --
21 ANDREI BOGOLUBOV: Bogolubov.
22 SENATOR SAVINO: Thank you. Bogolubov.
23 Everybody has hard names today. I don't know
24 what it is.
25 There has been a lot of talk about
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1 alternative methods of dosing, and you have a
2 product that's one of them.
3 So, if want to describe the PalliaTech
4 method.
5 ANDREI BOGOLUBOV: Thank you to both of you,
6 and to the other members of the Panel, for this, and
7 for your leadership, Senator Savino.
8 I am with PalliaTech. We're a company based
9 in Long Island, and we're working on advancing the
10 science and practice of palliative care,
11 particularly in cannabis delivery -- cannabis -- the
12 delivery of cannabis therapies.
13 SENATOR SAVINO: Is that on?
14 ANDREI BOGOLUBOV: Yes.
15 SENATOR SAVINO: It is?
16 ANDREI BOGOLUBOV: We have -- I'll just sit
17 closer. Sorry.
18 We have a medical device that we are
19 building, that will deliver the whole dose in a
20 metered form, single dose, smokelessly.
21 We think this is a very important aspect.
22 We support the legislation, but it's an
23 important aspect that is missing and should be
24 included in the legislation.
25 I have today the testimony of
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1 Dr. Steven Paterno, the co-director of the
2 Duke Cancer Center, who's on a number of our science
3 advisory board.
4 I will cut this back dramatically, and get
5 right to the point, and just read the relevant
6 excerpts.
7 What Dr. Paterno says, in his field of cancer
8 and pain management for cancer, that there's a lot
9 of interest in adding medical cannabis to their
10 symptom management [unintelligible].
11 In his view, the debate's on over whether
12 there's efficacy.
13 The question is: How do you deliver that?
14 And his question is:
15 15 years after California first legalized
16 medical use, most physicians, and almost all, we
17 think all medical institutions, in California and
18 other medical-cannabis states, cannot and will not
19 recommend cannabis to most, if not all, of their
20 patients who might benefit from the treatment.
21 And the question is: Why is that so?
22 First, under current conventional methods of
23 administrations, doctors can go no further than
24 certifying that a patient has a qualifying condition
25 because they cannot deliver cannabis as a medicine
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1 in a metered dose.
2 That's very important for doctors, for
3 liability reasons, and, because that is how they're
4 used to treating patients: to the dose-response
5 curve.
6 So unable to do that, all they can do is
7 suggest that their patients try cannabis and hope
8 for the best.
9 And that certainly works for many people.
10 You can get relief that way.
11 However, it's not the physician-guided care
12 envisioned in the legislation.
13 There is also a risk that a person with a
14 serious disease will be self-medicating to unknown,
15 uncontrolled, and widely variable levels that are
16 unacceptable to a doctor.
17 Certainly, people who have a serious disease
18 will take that option because the alternative is
19 unacceptable.
20 But for a physician, the tool is not there,
21 and that's an important problem.
22 The second obstacle is that the conventional
23 methods are not safe and clinically appropriate for
24 many people. Not all, again.
25 But for many patients, the primary method,
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1 smoking, is unsafe for everyone, and is not an
2 acceptable alternative for many patients
3 populations, including thousands of New Yorkers.
4 Cannabis smoke has more tar than tobacco and
5 similar carcinogenic compounds, and similar
6 respiratory risks. And that's particularly
7 dangerous for people with compromised immune
8 systems, such as people with AIDS and cancer.
9 Edibles are not unsafe, but they have some
10 serious limitations as a form of treatment.
11 Obviously, people can get relief from them,
12 but, they take 45 minutes to get relief. They
13 deliver only 5 to 20 percent of the potential
14 bioavailability of the beneficial chemicals.
15 So, there's a wide fluctuation in what
16 patients are getting, and that creates a problem,
17 again, for doctors.
18 Also, an edible doesn't work for someone
19 who's, through pain or their treatment regimen, has
20 lost their appetite and has nausea and vomiting,
21 such as chemotherapy or in the late stage of any
22 disease where you have pain and you lose your
23 appetite. A brownie isn't going the work for you.
24 So, without some sort of an alternative, the
25 net effect, if you don't include that metered-dosed
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1 option in the legislation, is that some people will
2 be left behind with no viable alternative, despite
3 the best of intentions.
4 These are patients who need rapid, consistent
5 relief without smoking:
6 Those who can't eat, as I've mentioned those;
7 Any terminal-stage patient who's
8 immunocompromised or has a declining cardiopulmonary
9 function;
10 Lost appetite, diversion of food.
11 Patients who have multidrug treatment
12 regiment and need the reduced dosage variability to
13 minimize the adverse effects, doctors need to know
14 what they're putting into that patient because
15 there's a range of other pharmaceuticals involved;
16 And people whose caregivers can't or won't
17 take the risk of having secondary smoke.
18 That's a lot of patients who need the help of
19 cannabis the most. They include:
20 Cancer patients getting aggressive
21 chemotherapy;
22 MS, AIDS, and Chron's disease patients in
23 advanced stages;
24 Patients with life-threatening and disabling
25 cardiovascular complications of diabetes;
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1 Anyone with advanced diabetic neuropathy;
2 If you have [unintelligible] or
3 chemotherapy-induced nausea;
4 And those with cardiopulmonary functions.
5 So, we're talking about a lot of people here.
6 So what we're doing is, we'd like to
7 respectfully urge, maybe to include in your
8 legislation, a medical standard of care that works
9 for all of these patients.
10 We have a technology, the vaporization
11 technology, that delivers a smokeless dose and a
12 metered dose, but there's other things, as well.
13 Charlotte's Web is a smokeless metered-dose
14 option. It's in a measured dose of oil.
15 And, so, these are essential. This is an
16 essential option for all those patients who simply
17 say they can't smoke a joint or eat a brownie.
18 This option, also, from the State's point of
19 view, is very important, because it answers the
20 Drug Enforcement Administration's position on
21 cannabis, where they say that medical-cannabis
22 models, as they currently exist, and I'm quoting,
23 "have not dealt with ensuring that the product meets
24 the standards of modern medical, quality, safety,
25 and efficiency."
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1 And they cite, specifically, smoke marijuana,
2 and the lack of standardized dosage and composition.
3 This goes to Senator Hassell-Thompson's
4 comments and questions on dosing.
5 So, therefore, we would like to submit and
6 request that you add a provision that specifically
7 includes and allows a metered smokeless form of --
8 of all the forms, metered smokeless forms, of
9 administration.
10 Our view on why that's necessary is that, in
11 a context of federal prohibition, anything you don't
12 specifically allow, you've excluded, effectively.
13 No one's going to deliver that option; take
14 the time and the effort to try and enter the market,
15 and run the risk, if they're not afforded the
16 protection of state law, such as the other methods.
17 Thank you very much.
18 SENATOR SAVINO: Thank you.
19 And that -- thank you, everyone.
20 [Applause.]
21 SENATOR SAVINO: That concludes the
22 roundtable discussion.
23 And, again, I want to thank all of you for
24 sharing your personal stories, your testimony, and
25 your advocacy.
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1 The day is young. There are Senators to be
2 hunted down.
3 Go get 'em.
4 Thank you.
5 And thanks, Senator Grisanti, for sitting
6 through most of it with me.
7 SENATOR GRISANTI: Thank you.
8
9 (Whereupon, at approximately 1:10 p.m.,
10 the Compassionate Care Act Roundtable Discussion
11 held before the New York State Senate concluded,
12 and adjourned.)
13
14 ---oOo---
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