senate Bill S5046A

2013-2014 Legislative Session

Provides for the operation of the donate life registry for organ, eye and tissue donation by a not-for-profit organization

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Archive: Last Bill Status - In Committee


  • Introduced
  • In Committee
  • On Floor Calendar
    • Passed Senate
    • Passed Assembly
  • Delivered to Governor
  • Signed/Vetoed by Governor

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Assembly Actions - Lowercase
Senate Actions - UPPERCASE
Jan 08, 2014 referred to health
returned to senate
died in assembly
Jun 20, 2013 referred to codes
delivered to assembly
passed senate
ordered to third reading cal.1492
committee discharged and committed to rules
Jun 17, 2013 print number 5046a
amend and recommit to finance
Jun 10, 2013 reported and committed to finance
May 07, 2013 referred to health

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Original
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Co-Sponsors

S5046 - Bill Details

See Assembly Version of this Bill:
A7518A
Current Committee:
Law Section:
Public Health Law
Laws Affected:
Amd §4310, Pub Health L; amd §95-d, St Fin L

S5046 - Bill Texts

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Provides for the operation of the donate life registry for organ, eye and tissue donation by a not-for-profit organization; requires all moneys in the life pass it on trust fund to be used for the operation and maintenance of such registry.

view sponsor memo
BILL NUMBER:S5046

TITLE OF BILL: An act to amend the public health law and the state
finance law, in relation to organ, eye and tissue donation

PURPOSE OF BILL:

This bill provides for the operation of the donate life registry for
organ, eye, and tissue donation by a not-for-profit organization.

SUMMARY OF SPECIFIC PROVISIONS:

Section 1 of the bill amends section 4310 of the public health law to
authorize the operation of the organ, eye, and tissue donation
registry by a not-for-profit entity by:

* Renumbering subdivision 1 of the law as subdivision 2 and creating a
new subdivision 1 that provides the bill's legislative intent and
findings;

*Renumbering subdivision 2 of the law as subdivision 5 and amending
the subdivision to provide language allowing the contractor to
facilitate enrollment through its website or paper enrollment,
allowing for the use of an electronic signature, providing the
contractor with authorization to make changes to the registry as
requested by registered donors, and incorporating language from
subdivision 5 of the law, which allows donors to specify which organs
they consent to donate and whether their organs may be used for
transplant, research, or both;

*Repealing subdivision 3 of the law and creating a new subdivision 3
that sets out the duties of the contractor and incorporates language
from subdivision 3 of the law, which provides access to the registry
to federal organ procurement organizations, licensed eye and tissue
banks, and other entities approved by the commissioner of health;

* Repealing subdivision 4 of the law and adding a new subdivision 4
that provides a payment structure for the new contractor;

* Repealing subdivision 5 of the law and replacing the provisions with
a new subdivision as noted above;

*Amending subdivision 6 of the law to clarify that any individual
registered in the New York State Donate Life Registry before July 23,
2008 has expressed consent to donate their organs, eyes, and tissue
upon death; and

*Repealing subdivision 7 of the law and renumbering subdivision 8 of
the law as subdivision 7, which provides the commissioner of health
with the authority to promulgate rules and regulations necessary to
implement the law.

Section 2 of the bill amends subdivision 2 of section 4310 of the
public health law of 2012, and renumbers it as subdivision 5. The
subdivision is amended to provide language allowing the contractor to
facilitate enrollment through its website or paper enrollment,
allowing for the use of an electronic, signature, providing the


contractor with authorization to make changes to the registry as
requested by registered donors, and incorporating language from
subdivision 5 of the law, which allows donors to specify which organs
they consent to donate and whether their organs may be used for
transplant, research, or both;

Section 3 of the bill amends subdivision 3 of section 95-d of the
state finance law by eliminating language that limits expenditures
from the Life Pass It On fund to organ transplant research and
education projects approved by the commissioner of health, or grants
provided to not-for-profit corporations that promote organ and tissue
donation awareness.

Section 4 of the bill is the effective date.

JUSTIFICATION:

New York State currently ranks 48th in donor designation share
(percentage of eligible population enrolled in the Registry) in the
nation, with only 20% of its population enrolled in the New York State
Donate Life Registry, while it has the third highest need for
transplantable organs. Under the current model, one New Yorker dies
every 13 hours while waiting for a transplant.

This legislation proposes that New York State increase enrollment in
the Donate Life Registry by following the example of states with the
highest donor designation share. Eight of the top ten states, all of
which have a share of over 60%, have turned over the operation and
promotion of their registries to not-for-profit organizations. Many
other large and complex states, like California, Texas, Illinois, and
Florida, have also taken the step of enlisting a not-for-profit
organization to operate the registry. By contracting with a statewide
not-for-profit organization, with a mission dedicated to saving lives
through organ, eye and tissue donation, New York State can increase
enrollment by streamlining the registration process and creating new
avenues for promotion.

For example, Texas turned its registry over to Donate Life Texas Inc.
in October of 2012. Donate Life Texas Inc. created a new electronic
registration process and took over promotion of the registry from the
State of Texas. Since then, a surge in enrollment has taken place,
with 100,000 new registrations taking place in November and December
of 2012 and over 150,000 new registrations in January of 2013.
Previously, Texas had averaged only 7,000 registrations a month.
Texas is currently predicted to enroll 8,000,000 new donors in five
years, and will soon surpass New York State's donor share.

PRIOR LEGISLATIVE HISTORY:

New bill.

FISCAL IMPLICATIONS:

None.

EFFECTIVE DATE:


This act shall take effect on the sixtieth day after it shall become
law; provided that the amendments to subdivision 2 of section 4310 of
the public health law, made by section 1 of this act shall take effect
on the same date and in the same manner as chapter 465 of the laws of
2012 take effect, and the amendments made thereto shall not affect the
expiration and reversion of such subdivision and shall expire and be
deemed repealed therewith, when upon such date section 2 of this act
shall take effect.

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                    S T A T E   O F   N E W   Y O R K
________________________________________________________________________

                                  5046

                       2013-2014 Regular Sessions

                            I N  S E N A T E

                               May 7, 2013
                               ___________

Introduced  by  Sen.  HANNON -- read twice and ordered printed, and when
  printed to be committed to the Committee on Health

AN ACT to amend the public health law and  the  state  finance  law,  in
  relation to organ, eye and tissue donation

  THE  PEOPLE OF THE STATE OF NEW YORK, REPRESENTED IN SENATE AND ASSEM-
BLY, DO ENACT AS FOLLOWS:

  Section 1. Section 4310 of the public health law, as amended by  chap-
ter  639  of the laws of 2006, the section heading as separately amended
by chapter 640 of the laws of 2006, subdivisions 1 and 3 as  amended  by
chapter  158 of the laws of 2012 and subdivision 2 as separately amended
by chapters 158 and 465 of the laws of  2012,  is  amended  to  read  as
follows:
  S  4310. New York state donate life registry for organ, EYE and tissue
donations. 1. LEGISLATIVE FINDINGS AND  INTENT.  THE  LEGISLATURE  FINDS
THAT  THERE  IS  A  NEED TO INCREASE THE NUMBER OF ORGAN, EYE AND TISSUE
DONORS TO SAVE AND IMPROVE LIVES IN THIS STATE. ONLY TWENTY  PERCENT  OF
ELIGIBLE  NEW  YORKERS ARE CURRENTLY IN THE DONATE LIFE REGISTRY TO MAKE
AN ANATOMICAL GIFT UPON THEIR DEATH, THE THIRD LOWEST DONOR  DESIGNATION
SHARE  IN  THE NATION, WHILE THE STATE OF NEW YORK HAS THE THIRD HIGHEST
NEED FOR ORGAN DONORS IN THE UNITED STATES AND ONE OF THE LONGEST  AVER-
AGE  WAITING  TIMES  FOR  KIDNEY TRANSPLANTS. A STATEWIDE ORGAN, EYE AND
TISSUE DONOR REGISTRY COUPLED WITH AN ENHANCED PROGRAM OF  PROMOTION  OF
SUCH  REGISTRY, WILL LEAD TO AN INCREASE IN THE NUMBER OF ORGAN, EYE AND
TISSUE DONORS REGISTERED IN THIS STATE, THEREBY AFFORDING  MORE  PERSONS
WHO  ARE AWAITING ORGAN, EYE OR TISSUE TRANSPLANTS THE OPPORTUNITY FOR A
FULL AND PRODUCTIVE LIFE.
  2. The department shall establish an  organ,  EYE,  and  tissue  donor
registry,  which  shall be called and be referred to as the "donate life
registry", WHICH SHALL PROVIDE A MEANS TO MAKE AND REGISTER  A  GIFT  OF
ORGANS,  EYES  AND TISSUES TO TAKE PLACE AFTER DEATH PURSUANT TO SECTION
FORTY-THREE HUNDRED ONE AND OTHER APPLICABLE PROVISIONS OF THIS ARTICLE.

 EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
                      [ ] is old law to be omitted.
                                                           LBD10414-01-3

S. 5046                             2

[Such registry shall contain a listing of all donors who  have  declared
their consent to make an anatomical gift.
  2.]  THE  DEPARTMENT SHALL ENTER INTO A CONTRACT FOR THE OPERATION AND
PROMOTION OF SUCH REGISTRY WITH A NOT-FOR-PROFIT STATEWIDE  ORGANIZATION
THAT  HAS  EXPERIENCE  WORKING  WITH  ORGAN,  EYE AND TISSUE PROCUREMENT
ORGANIZATIONS, HAS EXPERTISE IN CONDUCTING ORGAN, EYE AND  TISSUE  DONOR
PROMOTIONAL  CAMPAIGNS, AND IS AFFILIATED WITH THE ORGAN, EYE AND TISSUE
DONATION COMMUNITY THROUGHOUT THE STATE. THE CONTRACTOR MAY  SUBCONTRACT
AS  NEEDED  FOR  THE  EFFECTIVE  PERFORMANCE  OF  THE CONTRACT. ALL SUCH
SUBCONTRACTORS SHALL BE SUBJECT  TO  APPROVAL  BY  THE  DEPARTMENT.  THE
DEPARTMENT,  THE  DEPARTMENT  OF  MOTOR  VEHICLES,  THE  STATE  BOARD OF
ELECTIONS AND ANY OTHER APPLICABLE STATE AGENCY SHALL COOPERATE  IN  THE
COLLECTION OF REGISTRANT DATA AND ENSURE SECURE TRANSFER OF THIS DATA TO
THE CONTRACTOR.
  3. THE DUTIES OF THE CONTRACTOR SHALL INCLUDE THE FOLLOWING:
  (A)  THE  DEVELOPMENT, IMPLEMENTATION AND MAINTENANCE OF AN ORGAN, EYE
AND TISSUE DONOR REGISTRY THAT MAY ALLOW FOR ONLINE,  MAILED  AND  OTHER
FORMS  OF ORGAN, EYE AND TISSUE DONOR REGISTRATION, VERIFICATION, AMEND-
MENT AND REVOCATION.
  (I) THE REGISTRY SHALL BE MAINTAINED IN A MANNER THAT ALLOWS IMMEDIATE
ACCESS TO ORGAN, EYE AND TISSUE DONATION  RECORDS  TWENTY-FOUR  HOURS  A
DAY,  SEVEN  DAYS  A  WEEK TO THE CONTRACTOR, FEDERALLY DESIGNATED ORGAN
PROCUREMENT ORGANIZATIONS, LICENSED EYE AND TISSUE BANKS, AND SUCH OTHER
ENTITIES WHICH MAY BE APPROVED BY THE DEPARTMENT FOR ACCESS.
  (II) ACCESS TO THE REGISTRY SHALL HAVE SECURITY MEASURES AS SET  FORTH
IN THE CONTRACT TO PROTECT THE INTEGRITY OF THE IDENTIFIABLE DATA IN THE
REGISTRY, WHICH MAY ONLY BE ACCESSED BY THE PARTIES DESCRIBED IN SUBPAR-
AGRAPH  (I)  OF  THIS PARAGRAPH AND ONLY FOR THE PURPOSES OF DETERMINING
DONOR STATUS AT OR NEAR THE TIME OF DEATH OF AN INDIVIDUAL, OR,  BY  THE
CONTRACTOR  ONLY  FOR  PURPOSES  OF  QUALITY ASSESSMENT AND IMPROVEMENT,
TECHNICAL SUPPORT AND DONOR SERVICE.
  (III) DE-IDENTIFIED INFORMATION MAY BE ACCESSED BY THE ENTITIES LISTED
IN SUBPARAGRAPH (I) OF THIS PARAGRAPH OR THEIR DESIGNEES FOR PURPOSES OF
ANALYSIS,  PROMOTION,  EDUCATION,  QUALITY  IMPROVEMENT  AND   TECHNICAL
SUPPORT; AND
  (B)  PREPARATION  AND  SUBMISSION  OF  AN ANNUAL WRITTEN REPORT TO THE
DEPARTMENT. SUCH REPORT SHALL INCLUDE:
  (I) A PERFORMANCE MATRIX INCLUDING THE NUMBER OF  REGISTRANTS  ON  THE
REGISTRY  AND  AN  ANALYSIS OF THE REGISTRATION RATES, INCLUDING BUT NOT
LIMITED TO, LOCATION, METHOD OF  REGISTRATION,  DEMOGRAPHIC,  AND  STATE
COMPARISONS;
  (II)  THE  CHARACTERISTICS  OF REGISTRANTS AS DETERMINED FROM REGISTRY
INFORMATION;
  (III) THE ANNUAL DOLLAR AMOUNT OF VOLUNTARY CONTRIBUTIONS RECEIVED  BY
THE  CONTRACTOR  FOR  THE  PURPOSES  OF  MAINTAINING THE REGISTRY AND/OR
EDUCATIONAL AND PROMOTIONAL CAMPAIGNS AND INITIATIVES;
  (IV) A DESCRIPTION OF THE PROMOTIONAL CAMPAIGNS AND INITIATIVES IMPLE-
MENTED DURING THE YEAR; AND
  (V) ACCOUNTING STATEMENTS OF EXPENDITURES FOR THE  PURPOSES  OF  MAIN-
TAINING THE REGISTRY AND PROMOTIONAL CAMPAIGNS AND INITIATIVES.
  4.  PAYMENTS TO THE CONTRACTOR FOR THE OPERATION OF THE ORGAN, EYE AND
TISSUE DONOR REGISTRY SHALL BE PAID BY THE DEPARTMENT FROM FUNDS  AVAIL-
ABLE  FOR  THESE  PURPOSES,  INCLUDING THE FUNDS DEPOSITED INTO THE LIFE
PASS IT ON TRUST FUND PURSUANT TO SECTION  NINETY-FIVE-D  OF  THE  STATE
FINANCE LAW, AS ADDED BY CHAPTER FOUR HUNDRED FIFTEEN OF THE LAWS OF TWO
THOUSAND  THREE,  WHICH ARE DESIGNATED FOR MAINTAINING AND OPERATING THE

S. 5046                             3

ORGAN, EYE AND TISSUE DONOR REGISTRY AND PROMOTION OF THE  REGISTRY,  AS
DEEMED  APPROPRIATE BY THE COMMISSIONER. IN ADDITION, THE CONTRACTOR MAY
RECEIVE AND USE VOLUNTARY CONTRIBUTIONS.
  5.  (A) Such ORGAN, EYE AND TISSUE registration [of consent to make an
anatomical gift] can be made through [(a)]: (I) indication made  on  the
application or renewal form of a DRIVER'S license, [(b)] (II) indication
made  on  a  non-driver identification card application or renewal form,
[(c)] (III) enrolling in the registry website maintained by the  depart-
ment,  [which may include using an electronic signature subject to arti-
cle three of the state technology law, (d)] (IV) indication  made  on  a
voter registration form pursuant to subdivision five of section 5-210 of
the election law, (V) ENROLLMENT THROUGH THE ORGAN, EYE AND TISSUE DONOR
REGISTRY  WEBSITE  MAINTAINED  BY  THE CONTRACTOR, (VI) PAPER ENROLLMENT
SUBMITTED TO THE CONTRACTOR, or [(e)] (VII)  through  any  other  method
identified  by the commissioner. Where required by law for consent forms
described in [paragraphs (a) and (b)] SUBPARAGRAPHS (I) AND (II) of this
[subdivision] PARAGRAPH, the commissioner shall  ensure  that  space  is
provided  on  any  consent  form so that the applicant shall register or
decline registration in the donate life  registry  for  organ,  EYE  and
tissue  donations under this section and that the following is stated on
the form in clear and conspicuous type:
  "You must fill out the following section: Would you like to  be  added
to  the  Donate  Life  Registry? Check box for 'yes' or 'skip this ques-
tion'."
  The commissioner shall not maintain records of any person  who  checks
"skip this question". Failure to check a box shall not impair the valid-
ity of an application, and failure to check "yes" or checking "skip this
question"  shall  not be construed to imply a wish not to donate. In the
case of an applicant under eighteen years of age, checking  "yes"  shall
not constitute consent to make an anatomical gift or registration in the
donate  life  registry.  Where  an applicant has previously consented to
make an anatomical gift or  registered  in  the  donate  life  registry,
checking "skip this question" or failing to check a box shall not impair
that  consent  or  registration.  ENROLLMENT  THROUGH THE ORGAN, EYE AND
TISSUE DONOR REGISTRY WEBSITE MAINTAINED BY THE CONTRACTOR  THROUGH  ANY
OF  THE  MEANS  LISTED  ABOVE  MAY BE SIGNED BY ELECTRONIC SIGNATURE, IN
ACCORDANCE WITH THE PROVISIONS OF ARTICLE THREE OF THE STATE  TECHNOLOGY
LAW,  SUPPORTED BY ATTESTATION. The registration shall take effect [upon
the provision of] IMMEDIATELY AND written or electronic  notice  of  the
registration  SHALL  BE PROVIDED to the [person] INDIVIDUAL enrolling in
the registry.
  [3. (a) Information contained in the registry shall be  accessible  to
(i)  federally  designated organ procurement organizations, (ii) eye and
tissue  banks  licensed  by   the   department   pursuant   to   article
forty-three-B  of  this  chapter,  and  (iii)  any other entity formally
approved by the commissioner.
  (b) The information contained in the registry shall not be released to
any person except as expressly authorized by this section solely for the
purpose of identifying potential organ and tissue donors at or near  the
time of death.
  4.  If  the department had an established registry prior to the effec-
tive date of this section, it shall be deemed to meet  the  requirements
of this section.
  5.  The  registry  shall  provide  persons enrolled the opportunity to
specify which organs and tissues they want to donate and if the donation

S. 5046                             4

can be used for transplantation, research, or both.] (B) AMENDMENTS  MAY
BE MADE BY THE FOLLOWING:
  (I)  REGISTRANTS SUBMITTING AN AMENDMENT IN WRITING TO THE CONTRACTOR;
OR
  (II) REGISTRANTS SUBMITTING AN AMENDMENT  ELECTRONICALLY  THROUGH  THE
ORGAN,  EYE AND TISSUE DONOR REGISTRY WEBSITE MAINTAINED BY THE CONTRAC-
TOR.
  (C) REMOVAL FROM THE ORGAN, EYE AND TISSUE  DONOR  REGISTRY  SHALL  BE
ACCOMPLISHED  BY  PROVIDING NOTIFICATION TO THE CONTRACTOR. REMOVAL FROM
THE REGISTRY SHALL NOT BE DEEMED  A  REFUSAL  OF  ANY  OTHER  OR  FUTURE
ANATOMICAL GIFT.
  (D) THE REGISTRY SHALL PROVIDE INDIVIDUALS ENROLLED THE OPPORTUNITY TO
SPECIFY WHICH ORGANS AND TISSUES THEY WANT TO DONATE AND IF THE DONATION
MAY BE USED FOR TRANSPLANTATION, RESEARCH, OR BOTH.
  6.  [A  person]  AN  INDIVIDUAL  registered  in the [organ and tissue]
DONATE LIFE registry before [the effective  date  of  this  subdivision]
JULY  TWENTY-THIRD, TWO THOUSAND EIGHT shall be deemed to have expressed
[intent to donate, until and unless he or she files an amendment to  his
or her registration or a new registration expressing] consent to donate.
  7.  [The  commissioner shall contact each person registered before the
effective date of this subdivision in the organ and tissue  registry  in
writing  to inform him or her that at the time he or she registered, the
registry was that of intent and that the registry is now one of consent,
to explain in clear and  understandable  terms  the  difference  between
intent  and consent, and to provide opportunity for the person to change
his or her registration to  provide  consent  by  amending  his  or  her
current registration or executing a new registration.
  8.] The commissioner is authorized to promulgate rules and regulations
necessary to implement the provisions of this section.
  S  2.  Subdivision  2  of  section  4310  of the public health law, as
amended by chapter 158 of the laws  of  2012,  is  amended  to  read  as
follows:
  [2.]  5.  (A)  Such  ORGAN, EYE AND TISSUE registration [of consent to
make an anatomical gift] can be made through [(a)]: (I) indication  made
on  the  application  or  renewal form of a DRIVER'S license, [(b)] (II)
indication made on  a  non-driver  identification  card  application  or
renewal  form,  [(c)] (III) enrolling in the registry website maintained
by the department, [which may  include  using  an  electronic  signature
subject  to  article  three of the state technology law, (d)] (IV) indi-
cation made on a voter registration form pursuant to subdivision five of
section 5-210 of the election law, (V) ENROLLMENT THROUGH THE ORGAN, EYE
AND TISSUE DONOR REGISTRY WEBSITE MAINTAINED  BY  THE  CONTRACTOR,  (VI)
PAPER ENROLLMENT SUBMITTED TO THE CONTRACTOR, or [(e)] (VII) through any
other  method identified by the commissioner.  WHERE REQUIRED BY LAW FOR
CONSENT FORMS DESCRIBED IN SUBPARAGRAPHS (I) AND (II) OF THIS PARAGRAPH,
THE COMMISSIONER SHALL ENSURE THAT SPACE IS PROVIDED ON ANY CONSENT FORM
SO THAT THE APPLICANT SHALL REGISTER  OR  DECLINE  REGISTRATION  IN  THE
DONATE  LIFE  REGISTRY  FOR  ORGAN,  EYE AND TISSUE DONATIONS UNDER THIS
SECTION AND THAT THE FOLLOWING IS  STATED  ON  THE  FORM  IN  CLEAR  AND
CONSPICUOUS TYPE:
  "YOU  MUST  FILL OUT THE FOLLOWING SECTION: WOULD YOU LIKE TO BE ADDED
TO THE DONATE LIFE REGISTRY? CHECK BOX FOR 'YES'  OR  'SKIP  THIS  QUES-
TION'."
  THE  COMMISSIONER  SHALL NOT MAINTAIN RECORDS OF ANY PERSON WHO CHECKS
"SKIP THIS QUESTION". FAILURE TO CHECK A BOX SHALL NOT IMPAIR THE VALID-
ITY OF AN APPLICATION, AND FAILURE TO CHECK "YES" OR CHECKING "SKIP THIS

S. 5046                             5

QUESTION" SHALL NOT BE CONSTRUED TO IMPLY A WISH NOT TO DONATE.  IN  THE
CASE  OF  AN APPLICANT UNDER EIGHTEEN YEARS OF AGE, CHECKING "YES" SHALL
NOT CONSTITUTE CONSENT TO MAKE AN ANATOMICAL GIFT OR REGISTRATION IN THE
DONATE  LIFE  REGISTRY.  WHERE  AN APPLICANT HAS PREVIOUSLY CONSENTED TO
MAKE AN ANATOMICAL GIFT OR  REGISTERED  IN  THE  DONATE  LIFE  REGISTRY,
CHECKING "SKIP THIS QUESTION" OR FAILING TO CHECK A BOX SHALL NOT IMPAIR
THAT  CONSENT  OR  REGISTRATION.  ENROLLMENT  THROUGH THE ORGAN, EYE AND
TISSUE DONOR REGISTRY WEBSITE MAINTAINED BY THE CONTRACTOR  THROUGH  ANY
OF  THE  MEANS  LISTED  ABOVE  MAY BE SIGNED BY ELECTRONIC SIGNATURE, IN
ACCORDANCE WITH THE PROVISIONS OF ARTICLE THREE OF THE STATE  TECHNOLOGY
LAW,  SUPPORTED BY ATTESTATION. The registration shall take effect [upon
the provision of] IMMEDIATELY AND written or electronic  notice  of  the
registration  SHALL  BE PROVIDED to the [person] INDIVIDUAL enrolling in
the registry.
  (B) AMENDMENTS CAN BE MADE BY THE FOLLOWING:
  (I) REGISTRANTS SUBMITTING AN AMENDMENT IN WRITING TO THE  CONTRACTOR;
OR
  (II)  REGISTRANTS  SUBMITTING  AN AMENDMENT ELECTRONICALLY THROUGH THE
ORGAN, EYE AND TISSUE DONOR REGISTRY WEBSITE MAINTAINED BY THE  CONTRAC-
TOR.
  (C)  REMOVAL  FROM  THE  ORGAN, EYE AND TISSUE DONOR REGISTRY SHALL BE
ACCOMPLISHED BY PROVIDING NOTIFICATION TO THE CONTRACTOR.  REMOVAL  FROM
THE  REGISTRY  SHALL  NOT  BE  DEEMED  A  REFUSAL OF ANY OTHER OR FUTURE
ANATOMICAL GIFT.
  (D) THE REGISTRY SHALL PROVIDE INDIVIDUALS ENROLLED THE OPPORTUNITY TO
SPECIFY WHICH ORGANS AND TISSUES THEY WANT TO DONATE AND IF THE DONATION
MAY BE USED FOR TRANSPLANTATION, RESEARCH, OR BOTH.
  S 3. Subdivision 3 of section 95-d of the state finance law, as  added
by chapter 415 of the laws of 2003, is amended to read as follows:
  3.  Monies  of  the  fund shall be expended [only for organ transplant
research and education projects approved by the commissioner of  health,
or  to provide grants to not-for-profit corporations in this state which
are incorporated for the purpose of increasing and promoting  organ  and
tissue  donation  awareness]  TO SUPPORT TO MAINTENANCE AND OPERATION OF
THE DONATE LIFE REGISTRY, IN ACCORDANCE WITH THE PROVISIONS  OF  SECTION
FORTY-THREE HUNDRED TEN OF THE PUBLIC HEALTH LAW.
  S  4.  This  act  shall take effect on the sixtieth day after it shall
have become a law; provided that the  amendments  to  subdivision  2  of
section  4310  of the public health law, made by section one of this act
shall take effect on the same date and in the same manner as chapter 465
of the laws of 2012 take effect, and the amendments made  thereto  shall
not  affect  the  expiration and reversion of such subdivision and shall
expire and be deemed repealed therewith, when upon such date section two
of this act shall take effect.

Co-Sponsors

S5046A (ACTIVE) - Bill Details

See Assembly Version of this Bill:
A7518A
Current Committee:
Law Section:
Public Health Law
Laws Affected:
Amd §4310, Pub Health L; amd §95-d, St Fin L

S5046A (ACTIVE) - Bill Texts

view summary

Provides for the operation of the donate life registry for organ, eye and tissue donation by a not-for-profit organization; requires all moneys in the life pass it on trust fund to be used for the operation and maintenance of such registry.

view sponsor memo
BILL NUMBER:S5046A

TITLE OF BILL: An act to amend the public health law and the state
finance law, in relation to organ, eye and tissue donation

PURPOSE: This bill provides for the operation of the donate life
registry for organ, eye, and tissue donation by a not-for-profit
organization.

SUMMARY OF PROVISIONS: Section 1 is the legislative intent.

The bill amends section 4310 of the public health law to include the
word "eye" the New York state donate life registry. The bill
authorizes the operation of the organ, eye, and tissue donation
registry by a not-for-profit contractor, and makes various technical
changes to the registry law.

The bill clarifies the provision for use of an electronic signature.

The bill amends subdivision 3 of section 95-d of the state finance law
by eliminating language that limits expenditures from the Life Pass It
On fund to organ transplant research and education projects approved
by the commissioner of health, or grants provided to not-for-profit
corporations that promote organ and tissue donation awareness.

Section 5 of the bill is the effective date.

JUSTIFICATION: New York State currently ranks 48th in donor
designation share (percent- age of eligible population enrolled in the
Registry) in the nation, with only 20% of its population enrolled in
the New York State Donate Life Registry, while it has the third
highest need for transplantable organs. Under the current model, one
New Yorker dies every 13 hours while waiting for a transplant.

This legislation proposes that New York State increase enrollment in
the Donate Life Registry by following the example of states with the
highest donor designation share. Eight of the top ten states, all of
which have a share of over 60%, have turned over the operation and
promotion of their registries to not-for-profit organizations. Many
other large and complex states, like California, Texas, Illinois. and
Florida, have also taken the step of enlisting a not-for-profit
organization to operate the registry. By contracting with a statewide
not-for-profit organization, with a mission dedicated to saving lives
through organ, eye and tissue donation, New York State can increase
enrollment by streamlining the registration process and creating new
avenues for promotion.

LEGISLATIVE HISTORY: New bill.

FISCAL IMPLICATIONS: None.

EFFECTIVE DATE: This act shall take effect on the sixtieth day after
it shall become law.

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                    S T A T E   O F   N E W   Y O R K
________________________________________________________________________

                                 5046--A

                       2013-2014 Regular Sessions

                            I N  S E N A T E

                               May 7, 2013
                               ___________

Introduced  by  Sens. HANNON, CARLUCCI, LARKIN -- read twice and ordered
  printed, and when printed to be committed to the Committee  on  Health
  -- reported favorably from said committee and committed to the Commit-
  tee   on  Finance  --  committee  discharged,  bill  amended,  ordered
  reprinted as amended and recommitted to said committee

AN ACT to amend the public health law and  the  state  finance  law,  in
  relation to organ, eye and tissue donation

  THE  PEOPLE OF THE STATE OF NEW YORK, REPRESENTED IN SENATE AND ASSEM-
BLY, DO ENACT AS FOLLOWS:

  Section 1.  Legislative findings and intent. It is the intent  of  the
legislature to enable the New York State donate life registry for organ,
eye  and  tissue  donations to enroll a greater number of New Yorkers as
donors through the authorization of a  public-private  partnership  that
will  foster  innovative and cost-effective approaches toward enrollment
of donors and that will remove unnecessary barriers to enrollment.
  S 2. Section 4310 of the public health law, as amended by chapter  639
of  the laws of 2006, the section heading as separately amended by chap-
ter 640 of the laws of 2006, subdivisions 1 and 3 as amended by  chapter
158 of the laws of 2012 and subdivision 2 as separately amended by chap-
ters 158 and 465 of the laws of 2012, is amended to read as follows:
  S  4310. New York state donate life registry for organ, EYE and tissue
donations. 1.  The department shall establish an organ, EYE, and  tissue
donor  registry, which shall be called and be referred to as the "donate
life registry", WHICH SHALL PROVIDE A MEANS TO MAKE AND REGISTER A  GIFT
OF  ORGANS,  EYES  AND  TISSUES  TO  TAKE  PLACE AFTER DEATH PURSUANT TO
SECTION FORTY-THREE HUNDRED ONE AND OTHER APPLICABLE PROVISIONS OF  THIS
ARTICLE.  [Such  registry shall contain a listing of all donors who have
declared their consent to make an anatomical gift.]
  2.  THE COMMISSIONER MAY ENTER INTO A CONTRACT FOR THE  OPERATION  AND
PROMOTION  OF  SUCH REGISTRY SUBJECT TO SUCH TERMS AND CONDITIONS AS MAY
BE CONTAINED WITHIN SUCH CONTRACT WITH A NOT-FOR-PROFIT STATEWIDE ORGAN-

 EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
                      [ ] is old law to be omitted.
                                                           LBD10414-07-3

S. 5046--A                          2

IZATION THAT HAS EXPERIENCE WORKING WITH ORGAN, EYE AND TISSUE  PROCURE-
MENT  ORGANIZATIONS,  HAS  EXPERTISE IN CONDUCTING ORGAN, EYE AND TISSUE
DONOR PROMOTIONAL CAMPAIGNS, AND IS AFFILIATED WITH THE ORGAN,  EYE  AND
TISSUE  DONATION  COMMUNITY  THROUGHOUT  THE  STATE.  THE CONTRACTOR MAY
SUBCONTRACT AS NEEDED FOR THE EFFECTIVE PERFORMANCE OF THE CONTRACT. ALL
SUCH SUBCONTRACTORS SHALL BE SUBJECT TO APPROVAL  BY  THE  COMMISSIONER.
THE  DEPARTMENT,  THE  DEPARTMENT  OF MOTOR VEHICLES, THE STATE BOARD OF
ELECTIONS AND ANY OTHER APPLICABLE STATE AGENCY SHALL COOPERATE  IN  THE
COLLECTION AND TRANSFER OF REGISTRANT DATA TO THE CONTRACTOR.
  3. THE DUTIES OF THE CONTRACTOR MAY INCLUDE THE FOLLOWING:
  (A)  THE  DEVELOPMENT, IMPLEMENTATION AND MAINTENANCE OF AN ORGAN, EYE
AND TISSUE DONOR REGISTRY THAT MAY ALLOW FOR ONLINE,  MAILED  AND  OTHER
FORMS  OF ORGAN, EYE AND TISSUE DONOR REGISTRATION, VERIFICATION, AMEND-
MENT AND REVOCATION.
  (I) THE REGISTRY SHALL BE MAINTAINED IN A MANNER THAT ALLOWS IMMEDIATE
ACCESS TO ORGAN, EYE AND TISSUE DONATION  RECORDS  TWENTY-FOUR  HOURS  A
DAY,  SEVEN  DAYS  A  WEEK TO THE CONTRACTOR, FEDERALLY DESIGNATED ORGAN
PROCUREMENT ORGANIZATIONS, LICENSED EYE AND TISSUE BANKS, AND SUCH OTHER
ENTITIES WHICH MAY BE APPROVED BY THE DEPARTMENT  FOR  ACCESS.    ACCESS
SHALL  ALSO  BE  AVAILABLE, TO THE EXTENT PRACTICABLE, TO REGISTRANTS TO
CONFIRM THE ACCURACY AND VALIDITY OF THEIR REGISTRATION AND TO AMEND  OR
REVOKE  THEIR  REGISTRATION,  SUBJECT TO REASONABLE PROCEDURES TO VERIFY
THEIR IDENTITY.
  (II) ACCESS TO THE REGISTRY SHALL HAVE SECURITY MEASURES AS SET  FORTH
IN THE CONTRACT TO PROTECT THE INTEGRITY OF THE IDENTIFIABLE DATA IN THE
REGISTRY, WHICH MAY ONLY BE ACCESSED BY THE PARTIES DESCRIBED IN SUBPAR-
AGRAPH  (I)  OF  THIS PARAGRAPH AND ONLY FOR THE PURPOSES OF DETERMINING
DONOR STATUS AT OR NEAR THE TIME OF  DEATH  OF  AN  INDIVIDUAL,  BY  THE
CONTRACTOR  ONLY  FOR  PURPOSES  OF  QUALITY ASSESSMENT AND IMPROVEMENT,
TECHNICAL SUPPORT AND DONOR SERVICE, OR BY  INDIVIDUAL  REGISTRANTS  FOR
THE  PURPOSES OF CONFIRMING THE ACCURACY AND VALIDITY OF THEIR REGISTRA-
TION OR MAKING, AMENDING OR REVOKING THEIR REGISTRATION.
  (III) DE-IDENTIFIED INFORMATION MAY BE ACCESSED BY THE ENTITIES LISTED
IN SUBPARAGRAPH (I) OF THIS PARAGRAPH OR THEIR DESIGNEES FOR PURPOSES OF
ANALYSIS,  PROMOTION,  EDUCATION,  QUALITY  IMPROVEMENT  AND   TECHNICAL
SUPPORT;
  (B)  PREPARATION  AND SUBMISSION OF A PLAN TO ENCOURAGE ORGAN DONATION
THROUGH EDUCATION AND MARKETING EFFORTS AND OTHER  RECOMMENDATIONS  THAT
WOULD  STREAMLINE AND ENHANCE THE COST-EFFECTIVE OPERATION OF THE REGIS-
TRY; AND
  (C) PREPARATION AND SUBMISSION OF AN  ANNUAL  WRITTEN  REPORT  TO  THE
DEPARTMENT. SUCH REPORT SHALL INCLUDE:
  (I)  A  PERFORMANCE  MATRIX INCLUDING THE NUMBER OF REGISTRANTS ON THE
REGISTRY AND AN ANALYSIS OF THE REGISTRATION RATES,  INCLUDING  BUT  NOT
LIMITED  TO,  LOCATION,  METHOD  OF REGISTRATION, DEMOGRAPHIC, AND STATE
COMPARISONS;
  (II) THE CHARACTERISTICS OF REGISTRANTS AS  DETERMINED  FROM  REGISTRY
INFORMATION;
  (III)  THE ANNUAL DOLLAR AMOUNT OF VOLUNTARY CONTRIBUTIONS RECEIVED BY
THE CONTRACTOR FOR THE  PURPOSES  OF  MAINTAINING  THE  REGISTRY  AND/OR
EDUCATIONAL AND PROMOTIONAL CAMPAIGNS AND INITIATIVES;
  (IV) A DESCRIPTION OF THE PROMOTIONAL CAMPAIGNS AND INITIATIVES IMPLE-
MENTED DURING THE YEAR; AND
  (V)  ACCOUNTING  STATEMENTS  OF EXPENDITURES FOR THE PURPOSES OF MAIN-
TAINING THE REGISTRY AND PROMOTIONAL CAMPAIGNS AND INITIATIVES.

S. 5046--A                          3

  4. PAYMENTS TO THE CONTRACTOR FOR THE OPERATION OF THE ORGAN, EYE  AND
TISSUE  DONOR REGISTRY SHALL BE PAID BY THE DEPARTMENT FROM FUNDS AVAIL-
ABLE FOR THESE PURPOSES, INCLUDING THE FUNDS  DEPOSITED  INTO  THE  LIFE
PASS  IT  ON  TRUST  FUND PURSUANT TO SECTION NINETY-FIVE-D OF THE STATE
FINANCE LAW, AS ADDED BY CHAPTER FOUR HUNDRED FIFTEEN OF THE LAWS OF TWO
THOUSAND  THREE,  WHICH ARE DESIGNATED FOR MAINTAINING AND OPERATING THE
ORGAN, EYE AND TISSUE DONOR REGISTRY AND PROMOTION OF THE  REGISTRY,  AS
DEEMED  APPROPRIATE BY THE COMMISSIONER. IN ADDITION, THE CONTRACTOR MAY
RECEIVE AND USE VOLUNTARY CONTRIBUTIONS.
  5. (A) Such ORGAN, EYE AND TISSUE registration [of consent to make  an
anatomical  gift]  can be made through [(a)]: (I) indication made on the
application or renewal form of a DRIVER'S license, [(b)] (II) indication
made on a non-driver identification card application  or  renewal  form,
[(c)  enrolling  in  the  registry website maintained by the department,
which may include using an electronic signature subject to article three
of the state technology law, (d)]  (III)  indication  made  on  a  voter
registration  form  pursuant to subdivision five of section 5-210 of the
election law, (IV) ENROLLMENT THROUGH THE ORGAN, EYE  AND  TISSUE  DONOR
REGISTRY  WEBSITE,  (V)  PAPER  ENROLLMENT SUBMITTED TO THE REGISTRY, or
[(e)] (VI) through any other  method  identified  by  the  commissioner.
Where required by law for consent forms described in [paragraphs (a) and
(b)]  SUBPARAGRAPHS  (I)  AND  (II) of this [subdivision] PARAGRAPH, the
commissioner shall ensure that space is provided on any consent form  so
that  the applicant shall register or decline registration in the donate
life registry for organ, EYE and tissue donations under this section and
that the following is stated on the form in clear and conspicuous type:
  "You must fill out the following section: Would you like to  be  added
to  the  Donate  Life  Registry? Check box for 'yes' or 'skip this ques-
tion'."
  The commissioner shall not maintain records of any person  who  checks
"skip this question". Failure to check a box shall not impair the valid-
ity of an application, and failure to check "yes" or checking "skip this
question"  shall  not be construed to imply a wish not to donate. In the
case of an applicant under eighteen years of age, checking  "yes"  shall
not constitute consent to make an anatomical gift or registration in the
donate  life  registry.  Where  an applicant has previously consented to
make an anatomical gift or  registered  in  the  donate  life  registry,
checking "skip this question" or failing to check a box shall not impair
that  consent  or  registration.  ENROLLMENT  THROUGH THE ORGAN, EYE AND
TISSUE DONOR REGISTRY WEBSITE THROUGH ANY OF THE MEANS LISTED ABOVE  MAY
BE  SIGNED BY ELECTRONIC SIGNATURE, IN ACCORDANCE WITH THE PROVISIONS OF
ARTICLE THREE OF THE STATE TECHNOLOGY  LAW,  SUPPORTED  BY  THE  USE  OF
UNIQUE IDENTIFIERS THAT PROVIDE CONFIDENCE IN THE IDENTITY OF THE PERSON
PROVIDING  THE  ELECTRONIC SIGNATURE. The registration shall take effect
upon the provision of A written RECEIPT  or  electronic  notice  of  the
registration to the [person] INDIVIDUAL enrolling in the registry.
  [3.  (a)  Information contained in the registry shall be accessible to
(i) federally designated organ procurement organizations, (ii)  eye  and
tissue   banks   licensed   by   the   department  pursuant  to  article
forty-three-B of this chapter,  and  (iii)  any  other  entity  formally
approved by the commissioner.
  (b) The information contained in the registry shall not be released to
any person except as expressly authorized by this section solely for the
purpose  of identifying potential organ and tissue donors at or near the
time of death.

S. 5046--A                          4

  4. If the department had an established registry prior to  the  effec-
tive  date  of this section, it shall be deemed to meet the requirements
of this section.
  5.  The  registry  shall  provide  persons enrolled the opportunity to
specify which organs and tissues they want to donate and if the donation
can be used for transplantation, research, or both.] (B) AMENDMENTS  MAY
BE MADE BY THE FOLLOWING:
  (I) REGISTRANTS SUBMITTING AN AMENDMENT IN WRITING TO THE REGISTRY; OR
  (II)  REGISTRANTS  SUBMITTING  AN AMENDMENT ELECTRONICALLY THROUGH THE
ORGAN, EYE AND TISSUE DONOR REGISTRY WEBSITE.
  (C) REMOVAL FROM THE ORGAN, EYE AND TISSUE  DONOR  REGISTRY  SHALL  BE
ACCOMPLISHED BY PROVIDING NOTIFICATION TO THE REGISTRY. REMOVAL FROM THE
REGISTRY SHALL NOT BE DEEMED A REFUSAL OF ANY OTHER OR FUTURE ANATOMICAL
GIFT.
  (D) THE REGISTRY SHALL PROVIDE INDIVIDUALS ENROLLED THE OPPORTUNITY TO
SPECIFY WHICH ORGANS AND TISSUES THEY WANT TO DONATE AND IF THE DONATION
MAY BE USED FOR TRANSPLANTATION, RESEARCH, OR BOTH.
  6.  [A  person]  AN  INDIVIDUAL  registered  in the [organ and tissue]
DONATE LIFE registry before the effective date of this subdivision shall
be deemed to have expressed intent to donate, until and unless he or she
files an amendment to his or her  registration  or  a  new  registration
expressing consent to donate.
  7.  The  commissioner  shall contact each person registered before the
effective date of this subdivision in the organ and tissue  registry  in
writing  to inform him or her that at the time he or she registered, the
registry was that of intent and that the registry is now one of consent,
to explain in clear and  understandable  terms  the  difference  between
intent  and consent, and to provide opportunity for the person to change
his or her registration to  provide  consent  by  amending  his  or  her
current registration or executing a new registration.
  8.  The commissioner is authorized to promulgate rules and regulations
necessary to implement the provisions of this section.
  S 3. Subdivision 2 of section  4310  of  the  public  health  law,  as
amended  by  chapter  158  of  the  laws  of 2012, is amended to read as
follows:
  [2.] 5. (A) Such ORGAN, EYE AND TISSUE  registration  [of  consent  to
make  an anatomical gift] can be made through [(a)]: (I) indication made
on the application or renewal form of a  DRIVER'S  license,  [(b)]  (II)
indication  made  on  a  non-driver  identification  card application or
renewal form, [(c) enrolling in the registry website maintained  by  the
department,  which  may include using an electronic signature subject to
article three of the state technology law, (d)] (III) indication made on
a voter registration form pursuant to subdivision five of section  5-210
of  the  election law, (IV) ENROLLMENT THROUGH THE ORGAN, EYE AND TISSUE
DONOR REGISTRY WEBSITE, (V) PAPER ENROLLMENT SUBMITTED TO THE  REGISTRY,
or  [(e)]  (VI) through any other method identified by the commissioner.
ENROLLMENT THROUGH THE ORGAN, EYE  AND  TISSUE  DONOR  REGISTRY  WEBSITE
THROUGH ANY OF THE MEANS LISTED ABOVE MAY BE SIGNED BY ELECTRONIC SIGNA-
TURE,  IN  ACCORDANCE  WITH THE PROVISIONS OF ARTICLE THREE OF THE STATE
TECHNOLOGY LAW, SUPPORTED BY THE USE OF UNIQUE IDENTIFIERS THAT  PROVIDE
CONFIDENCE IN THE IDENTITY OF THE PERSON PROVIDING THE ELECTRONIC SIGNA-
TURE. The registration shall take effect upon the provision of A written
RECEIPT  or  electronic notice of the registration to the [person] INDI-
VIDUAL enrolling in the registry.
  (B) AMENDMENTS CAN BE MADE BY THE FOLLOWING:
  (I) REGISTRANTS SUBMITTING AN AMENDMENT IN WRITING TO THE REGISTRY; OR

S. 5046--A                          5

  (II) REGISTRANTS SUBMITTING AN AMENDMENT  ELECTRONICALLY  THROUGH  THE
ORGAN, EYE AND TISSUE DONOR REGISTRY WEBSITE.
  (C)  REMOVAL  FROM  THE  ORGAN, EYE AND TISSUE DONOR REGISTRY SHALL BE
ACCOMPLISHED BY PROVIDING NOTIFICATION TO THE REGISTRY. REMOVAL FROM THE
REGISTRY SHALL NOT BE DEEMED A REFUSAL OF ANY OTHER OR FUTURE ANATOMICAL
GIFT.
  (D) THE REGISTRY SHALL PROVIDE INDIVIDUALS ENROLLED THE OPPORTUNITY TO
SPECIFY WHICH ORGANS AND TISSUES THEY WANT TO DONATE AND IF THE DONATION
MAY BE USED FOR TRANSPLANTATION, RESEARCH, OR BOTH.
  S 4. Subdivision 3 of section 95-d of the state finance law, as  added
by chapter 415 of the laws of 2003, is amended to read as follows:
  3.  Monies  of  the  fund shall be expended [only for organ transplant
research and education projects approved by the commissioner of  health,
or  to provide grants to not-for-profit corporations in this state which
are incorporated for the purpose of increasing and promoting  organ  and
tissue  donation  awareness] TO SUPPORT THE MAINTENANCE AND OPERATION OF
THE DONATE LIFE REGISTRY, IN ACCORDANCE WITH THE PROVISIONS  OF  SECTION
FORTY-THREE  HUNDRED  TEN  OF  THE PUBLIC HEALTH LAW, PROVIDED, HOWEVER,
THAT ANY REMAINING FUNDS, NOT  NECESSARY  FOR  THESE  PURPOSES,  MAY  BE
EXPENDED FOR ORGAN TRANSPLANT RESEARCH AND EDUCATION PROJECTS.
  S  5.  This  act  shall take effect on the sixtieth day after it shall
have become a law; provided that the  amendments  to  subdivision  2  of
section  4310  of the public health law, made by section two of this act
shall take effect on the same date and in the same manner as chapter 465
of the laws of 2012 take effect, and the amendments made  thereto  shall
not  affect  the  expiration and reversion of such subdivision and shall
expire and be deemed repealed therewith, when  upon  such  date  section
three of this act shall take effect.

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