NY State Senate Bill 2015-S3256B

Archive: Last Bill Status - In Senate Committee Finance Committee

Introduced
- In Committee Assembly
- In Committee Senate
- On Floor Calendar Assembly
- On Floor Calendar Senate
- Passed Assembly
- Passed Senate
Delivered to Governor
Signed By Governor

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Date of Action	Assembly Actions - Lowercase Senate Actions - UPPERCASE
Apr 13, 2016	print number 3256b
Apr 13, 2016	amend and recommit to finance
Jan 15, 2016	print number 3256a
Jan 15, 2016	amend (t) and recommit to finance
Jan 06, 2016	referred to finance
Feb 04, 2015	referred to finance

Bill Amendments

Original

B (Active)

co-Sponsors

2015-S3256 - Details

Current Committee:: Senate Finance
Law Section:: Appropriations
Laws Affected:: Amd §365, Soc Serv L; add Art 31 Title IV §3126, Pub Health L
Versions Introduced in Other Legislative Sessions:: 2013-2014: S6239
2017-2018: S4054
2019-2020: S2281

2015-S3256 - Summary

Establishes the sickle cell treatment act of 2016; makes an appropriation of one million dollars.

2015-S3256 - Sponsor Memo

                                BILL NUMBER:S3256

TITLE OF BILL:  An act to amend the social services law and the public
health law, in relation to establishing the sickle cell treatment act
of 2015; and making an appropriation therefor

PURPOSE:  To include primary and secondary preventative medical
strategies, treatment, and services, including genetic counseling and
testing, for individuals who have Sickle Cell Disease in the City of
New York and for no more than five counties.

SUMMARY OF PROVISIONS:

Section 1 of the bill names the bill the Sickle Cell Treatment Act of
2014.

Section 2 of the bill outlines what Sickle Cell Disease is, how it is
an inherited disease and the number of people afflicted.

Section 3 of the bill amends Section 36.5 of social services law by
adding a new subdivision number 13. New subdivision 13 provides that
the health Department shall be responsible for furnishing medical
assistance and counseling for prevention of the spread of sickle cell
disease and medical services for eligible individuals who are
afflicted with sickle cell disease.

Section 4 amends the public health law by adding a new Title 4
entitled, "Prevention and Treatment of Sickle Cell Disease
Demonstration Program" to section 3126. Section 3126 states that the
commissioner shall establish and conduct a prevention and treatment of
sickle cell disease demonstration program in the city of New York and
for no more than five other counties for the purpose of developing and
establishing systemic mechanisms to improve the prevention and
treatment of sickle cell disease through the coordination of service
delivery for individuals with sickle cell disease, genetic counseling
and testing, bundling of technical services related to the prevention
and treatment of sickle cell disease, training of health
professionals, and identifying and establishing other efforts related
to the expansion and coordination of education, treatment, and
continuity of care programs for individuals with sickle cell disease.

Section 5 appropriates one million dollars to the department of health
to carry out the demonstration program.

JUSTIFICATION:

Sickle Cell Disease changes normal, round red blood cells into cells
that can be shaped like a sickle. A sickle is a farm tool with a
curved blade that is mainly used to cut grain crops. Normal red blood
cells move easily through blood vessels carrying oxygen. Sickle cells,
however, can get stuck in the blood stream and stop the oxygen being
transported. Sickle Cell Disease can cause a lot of pain and harm
organs, muscles and bones.

Sickle cell disease means a lifelong battle against the health
problems it can cause, such as pain, infections, anemia, and stroke.


Sickle Cell Disease is inherited, which means it is passed from parent
to child. To get sickle cell disease, a child has to inherit two
sickle cell genes-one from each parent. When a child inherits the gene
from just one parent, that child has sickle cell trait. Having this
trait means that you do not have the disease but you are a carrier and
could pass the gene on to your children.

Approximately 100,000 Americans have Sickle Cell Disease and
approximately 1,000 American babies are born with the disease each
year. Sickle Cell Disease also is a global problem with close to
500,000 babies born annually with the disease. In the United States,
Sickle Cell Disease is most common in Americans of African descent and
in those of Hispanic, Mediterranean and Middle Eastern ancestry.
Among newborn American infants, Sickle Cell Disease occurs in
approximately 1 in 500 Americans of African descent, 1 in 36,000
Hispanics, and 1 in 80,000 Caucasians. More than 3,000,000 Americans,
mostly Americans of African descent, have the sickle cell trait.

Sickle Cell Disease was once considered a juvenile disease as the life
expectancy of someone with the disease was usually the late teens or
early twenties. However, with advances in medicine, the average life
span is now between 45 and 50 years.

Due to its history as a juvenile disease, there is a lack of research
and services for adults afflicted with the disease. This bill would
provide preventative medical strategies, treatment and services to
juveniles and adults with Sickle Cell Disease, In addition to the
medical services provided, this bill will encourage and support
testing to determine carriers of the Sickle Cell trait to stop the
spread of the disease. To this end, the commissioner of health shall
establish and conduct a prevention and treatment of sickle cell
disease demonstration program in The City of New York and in no more
than five other counties, for the purpose of developing and
establishing systemic mechanisms to improve the prevention and
treatment of Sickle Cell Disease.

LEGISLATIVE HISTORY: New Bill

FISCAL IMPLICATIONS:  Appropriation of $1 million.

EFFECTIVE DATE:  This act shall take effect immediately.

2015-S3256 - Bill Text download pdf

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

                                  3256

                       2015-2016 Regular Sessions

                            I N  S E N A T E

                            February 4, 2015
                               ___________

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

AN ACT to amend the social services law and the public  health  law,  in
  relation  to  establishing  the sickle cell treatment act of 2015; and
  making an appropriation therefor

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

  Section  1.  This  act  shall be known and may be cited as the "sickle
cell treatment act of 2015".
  S 2. Legislative findings. The legislature hereby finds  and  declares
the following:
  (1)  Sickle  cell  disease  (SCD) is an inherited disease of red blood
cells that is a major health problem in the United States.
  (2) Approximately 100,000 Americans have SCD and  approximately  1,000
American  babies  are  born  with  the  disease each year. SCD also is a
global problem with close to  500,000  babies  born  annually  with  the
disease.
  (3)  In the United States, SCD is most common in African-Americans and
in those of Hispanic, Mediterranean, and Middle Eastern ancestry.  Among
newborn  American infants, SCD occurs in approximately 1 in 500 African-
Americans, 1 in 36,000 Hispanics, and 1 in 80,000 Caucasians.
  (4) More than 3,000,000 Americans, mostly African-Americans, have  the
sickle  cell  trait.  These Americans are healthy carriers of the sickle
cell gene who have inherited the normal hemoglobin gene from one  parent
and  the  sickle cell gene from the other parent. A sickle cell trait is
not a disease, but when both parents have the sickle cell  trait,  there
is  a 1 in 4 chance with each pregnancy that the child will be born with
SCD.
  (5) Children with SCD may exhibit frequent pain  episodes,  entrapment
of  blood  within  the  spleen,  severe anemia, acute lung complications
(acute chest syndrome), and priapism. During episodes  of  severe  pain,

 EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
                      [ ] is old law to be omitted.
                                                           LBD04153-01-5

S. 3256                             2

spleen  enlargement,  or  acute  lung  complications,  life  threatening
complications can develop rapidly.  Children with SCD are also  at  risk
for  septicemia,  meningitis,  and  stroke. Children with SCD at highest
risk  for stroke can be identified and, thus, treated early with regular
blood transfusions for stroke prevention.
  (6) The most feared complication for children with  SCD  is  a  stroke
(either  overt  or  silent) occurring in 30 percent of the children with
sickle cell anemia prior to their 18th birthday and occurring in infants
as young as 18 months of age. Students with SCD and silent  strokes  may
not  have  any  physical signs of such disease or strokes but may have a
lower educational attainment when compared to children with SCD.
  (7) Many adults with SCD have acute problems, such  as  frequent  pain
episodes  and  acute  lung complications (acute chest syndrome) that can
result in death. Adults with SCD  can  also  develop  chronic  problems,
including pulmonary disease, pulmonary hypertension, degenerative chang-
es  in  the  shoulder  and  hip joints (bone necrosis), poor vision, and
kidney failure.
  (8) The average life span for an adult with SCD is 45-50 years.  While
some patients can remain without symptoms for years, many others may not
survive  infancy  or  early childhood. Causes of death include bacterial
infection, stroke, and lung, kidney, heart, or liver failure.  Bacterial
infections and lung injuries are leading causes of death in children and
adults with SCD.
  (9)  As  a  complex  disorder  with  multisystem  manifestations,  SCD
requires specialized comprehensive and continuous care  to  achieve  the
best possible outcome. Newborn screening, genetic counseling, and educa-
tion  of  patients and family members are critical preventative measures
that decrease morbidity and mortality, delays or prevents complications,
reduces in-patient hospital stays, and decreases overall costs of care.
  (10) Stroke in the adult  SCD  population  commonly  results  in  both
mental and physical disabilities for life.
  (11)  Currently,  one  of  the most effective treatments to prevent or
treat an overt stroke or a silent stroke for a  child  with  SCD  is  at
least  monthly  blood  transfusions  throughout  childhood for many, and
throughout life for some. This requires the removal of sickle cell blood
and replacement with normal blood (exchange transfusion).
  (12) With acute lung  complications  (acute  chest  syndrome),  trans-
fusions are usually required and are often the only therapy demonstrated
to prevent premature death.
  The  legislature declares its intent to develop and establish systemic
mechanisms to improve  the  prevention  and  treatment  of  sickle  cell
disease.
  S 3. Section 365 of the social services law is amended by adding a new
subdivision 13 to read as follows:
  13.  ANY  INCONSISTENT PROVISION OF THIS CHAPTER OR OTHER LAW NOTWITH-
STANDING, THE DEPARTMENT SHALL BE  RESPONSIBLE  FOR  FURNISHING  MEDICAL
ASSISTANCE  FOR  PREVENTATIVE MEDICAL STRATEGIES, INCLUDING PROPHYLAXIS,
AND TREATMENT AND SERVICES FOR ELIGIBLE INDIVIDUALS WHO HAVE SICKLE CELL
DISEASE. FOR THE PURPOSES OF  THIS  SUBDIVISION,  "PREVENTATIVE  MEDICAL
STRATEGIES, TREATMENT AND SERVICES" SHALL INCLUDE, BUT NOT BE LIMITED TO
THE FOLLOWING:
  (A) CHRONIC BLOOD TRANSFUSION (WITH DEFEROXAMINE CHELATION) TO PREVENT
STROKE  IN INDIVIDUALS WITH SICKLE CELL DISEASE WHO HAVE BEEN IDENTIFIED
AS BEING AT HIGH RISK FOR STROKE;
  (B) GENETIC COUNSELING AND TESTING FOR INDIVIDUALS  WITH  SICKLE  CELL
DISEASE OR THE SICKLE CELL TRAIT; OR

S. 3256                             3

  (C) OTHER TREATMENT AND SERVICES TO PREVENT INDIVIDUALS WHO HAVE SICK-
LE CELL DISEASE AND WHO HAVE HAD A STROKE FROM HAVING ANOTHER STROKE.
  S  4.  Article  31 of the public health law is amended by adding a new
title IV to read as follows:
                                TITLE IV
  PREVENTION AND TREATMENT OF SICKLE CELL DISEASE DEMONSTRATION PROGRAM
SECTION 3126. PREVENTION AND TREATMENT OF  SICKLE  CELL  DISEASE  DEMON-
                STRATION PROGRAM.
  S  3126. PREVENTION AND TREATMENT OF SICKLE CELL DISEASE DEMONSTRATION
PROGRAM. 1. THE COMMISSIONER SHALL ESTABLISH AND  CONDUCT  A  PREVENTION
AND  TREATMENT  OF SICKLE CELL DISEASE DEMONSTRATION PROGRAM IN THE CITY
OF NEW YORK AND FOR NO MORE  THAN  FIVE  ADDITIONAL  COUNTIES,  FOR  THE
PURPOSE  OF  DEVELOPING  AND ESTABLISHING SYSTEMIC MECHANISMS TO IMPROVE
THE PREVENTION AND TREATMENT OF SICKLE CELL DISEASE, INCLUDING THROUGH:
  (A) THE COORDINATION OF SERVICE DELIVERY FOR INDIVIDUALS  WITH  SICKLE
CELL DISEASE;
  (B) GENETIC COUNSELING AND TESTING;
  (C)  BUNDLING  OF  TECHNICAL  SERVICES  RELATED  TO THE PREVENTION AND
TREATMENT OF SICKLE CELL DISEASE;
  (D) TRAINING OF HEALTH PROFESSIONALS; AND
  (E) IDENTIFYING AND ESTABLISHING OTHER EFFORTS RELATED TO  THE  EXPAN-
SION  AND  COORDINATION  OF EDUCATION, TREATMENT, AND CONTINUITY OF CARE
PROGRAMS FOR INDIVIDUALS WITH SICKLE CELL DISEASE.
  2. ON OR BEFORE THE FIRST OF  JANUARY,  TWO  THOUSAND  SEVENTEEN,  THE
COMMISSIONER  SHALL  REPORT TO THE GOVERNOR, THE SPEAKER OF THE ASSEMBLY
AND THE TEMPORARY PRESIDENT  OF  THE  SENATE  ON  THE  IMPACT  THAT  THE
PREVENTION  AND  TREATMENT  OF SICKLE CELL DISEASE DEMONSTRATION PROGRAM
HAS HAD ON INDIVIDUALS WITH SICKLE CELL DISEASE IN  REGARDS  TO  COORDI-
NATION  OF SERVICE DELIVERY, GENETIC COUNSELING AND TESTING, BUNDLING OF
TECHNICAL SERVICES RELATED TO THE PREVENTION  AND  TREATMENT  OF  SICKLE
CELL  DISEASE,  TRAINING  OF HEALTH PROFESSIONALS AND THE IDENTIFICATION
AND ESTABLISHMENT OF OTHER EFFORTS RELATED TO THE EXPANSION AND  COORDI-
NATION OF EDUCATION, TREATMENT, AND CONTINUITY OF CARE PROGRAMS FOR SUCH
INDIVIDUALS.
  S  5.  The sum of one million dollars ($1,000,000) is hereby appropri-
ated to the department of health out of any moneys in the state treasury
in the general fund to the credit of the  state  purposes  account,  not
otherwise  appropriated, and made immediately available, for the purpose
of carrying out the provisions of this act. Such moneys shall be payable
on the audit and warrant of the comptroller  on  vouchers  certified  or
approved by the commissioner of health in the manner prescribed by law.
  S 6. This act shall take effect immediately.

co-Sponsors

View additional co-sponsors

2015-S3256A - Details

Current Committee:: Senate Finance
Law Section:: Appropriations
Laws Affected:: Amd §365, Soc Serv L; add Art 31 Title IV §3126, Pub Health L
Versions Introduced in Other Legislative Sessions:: 2013-2014: S6239
2017-2018: S4054
2019-2020: S2281

2015-S3256A - Summary

Establishes the sickle cell treatment act of 2016; makes an appropriation of one million dollars.

2015-S3256A - Sponsor Memo

                                 BILL NUMBER:  S3256A

 TITLE OF BILL :

An act to amend the social services law and the public health law, in
relation to establishing the sickle cell treatment act of 2016; and
making an appropriation therefor

 PURPOSE :

To include primary and secondary preventative medical strategies,
treatment, and services, including genetic counseling and testing, for
individuals who have Sickle Cell Disease in the City of New York and
for no more than five counties.

 SUMMARY OF PROVISIONS :

Section 1 of the bill names the bill the Sickle Cell Treatment Act of
2016.

Section 2 of the bill outlines what Sickle Cell Disease is, how it is
an inherited disease and the number of people afflicted.

Section 3 of the bill amends Section 36.5 of social services law by
adding a new subdivision number 13. New subdivision 13 provides that
the health Department shall be responsible for furnishing medical

assistance and counseling for prevention of the spread of sickle cell
disease and medical services for eligible individuals who are
afflicted with sickle cell disease.

Section 4 amends the public health law by adding a new Title 4
entitled, "Prevention and Treatment of Sickle Cell Disease
Demonstration Program" to section 3126. Section 3126 states that the
commissioner shall establish and conduct a prevention and treatment of
sickle cell disease demonstration program in the city of New York and
for no more than five other counties for the purpose of developing and
establishing systemic mechanisms to improve the prevention and
treatment of sickle cell disease through the coordination of service
delivery for individuals with sickle cell disease, genetic counseling
and testing, bundling of technical services related to the prevention
and treatment of sickle cell disease, training of health
professionals, and identifying and establishing other efforts related
to the expansion and coordination of education, treatment, and
continuity of care programs for individuals with sickle cell disease.

Section 5 appropriates one million dollars to the department of health
to carry out the demonstration program.

 EXISTING LAW :

Such program does not exist under current law.

 JUSTIFICATION :

Sickle Cell Disease changes normal, round red blood cells into cells
that can be shaped like a sickle. A sickle is a farm tool with a
curved blade that is mainly used to cut grain crops. Normal red blood
cells move easily through blood vessels carrying oxygen. Sickle cells,
however, can get stuck in the blood stream and stop the oxygen being
transported. Sickle Cell Disease can cause a lot of pain and harm
organs, muscles and bones.

Sickle cell disease means a lifelong battle against the health
problems it can cause, such as pain, infections, anemia, and stroke.
Sickle Cell Disease is inherited, which means it is passed from parent
to child. To get sickle cell disease, a child has to inherit two
sickle cell genes-one from each parent. When a child inherits the gene
from just one parent, that child has sickle cell trait. Having this
trait means that you do not have the disease but you are a carrier and
could pass the gene on to your children.

Approximately 100,000 Americans have Sickle Cell Disease and
approximately 1,000 American babies are born with the disease each
year. Sickle Cell Disease also is a global problem with close to
500,000 babies born annually with the disease. In the United States,
Sickle Cell Disease is most common in Americans of African descent and
in those of Hispanic, Mediterranean and Middle Eastern ancestry.
Among newborn American infants, Sickle Cell Disease occurs in
approximately 1 in 500 Americans of African descent, 1 in 36,000
Hispanics, and 1 in 80,000 Caucasians. More than 3,000,000 Americans,
mostly Americans of African descent, have the sickle cell trait.

Sickle Cell Disease was once considered a juvenile disease as the life
expectancy of someone with the disease was usually the late teens or
early twenties. However, with advances in medicine, the average life
span is now between 45 and 50 years.

Due to its history as a juvenile disease, there is a lack of research
and services for adults afflicted with the disease. This bill would
provide preventative medical strategies, treatment and services to
juveniles and adults with Sickle Cell Disease, In addition to the
medical services provided, this bill will encourage and support
testing to determine carriers of the Sickle Cell trait to stop the
spread of the disease. To this end, the commissioner of health shall
establish and conduct a prevention and treatment of sickle cell
disease demonstration program in The City of New York and in no more
than five other counties, for the purpose of developing and
establishing systemic mechanisms to improve the prevention and
treatment of Sickle Cell Disease.

 LEGISLATIVE HISTORY :

New bill

 FISCAL IMPLICATIONS :

Appropriation of $1 million.

 LOCAL FISCAL IMPLICATIONS :

None

 EFFECTIVE DATE :
This act shall take effect immediately.

2015-S3256A - Bill Text download pdf

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

                                 3256--A

                       2015-2016 Regular Sessions

                            I N  S E N A T E

                            February 4, 2015
                               ___________

Introduced  by  Sens.  SANDERS, DILAN -- read twice and ordered printed,
  and when printed to be committed to the Committee on Finance -- recom-
  mitted to the Committee on Finance in accordance with Senate  Rule  6,
  sec.  8  --  committee  discharged, bill amended, ordered reprinted as
  amended and recommitted to said committee

AN ACT to amend the social services law and the public  health  law,  in
  relation  to  establishing  the sickle cell treatment act of 2016; and
  making an appropriation therefor

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

  Section  1.  This  act  shall be known and may be cited as the "sickle
cell treatment act of 2016".
  S 2. Legislative findings. The legislature hereby finds  and  declares
the following:
  (1)  Sickle  cell  disease  (SCD) is an inherited disease of red blood
cells that is a major health problem in the United States.
  (2) Approximately 100,000 Americans have SCD and  approximately  1,000
American  babies  are  born  with  the  disease each year. SCD also is a
global problem with close to  500,000  babies  born  annually  with  the
disease.
  (3)  In the United States, SCD is most common in African-Americans and
in those of Hispanic, Mediterranean, and Middle Eastern ancestry.  Among
newborn  American infants, SCD occurs in approximately 1 in 500 African-
Americans, 1 in 36,000 Hispanics, and 1 in 80,000 Caucasians.
  (4) More than 3,000,000 Americans, mostly African-Americans, have  the
sickle  cell  trait.  These Americans are healthy carriers of the sickle
cell gene who have inherited the normal hemoglobin gene from one  parent
and  the  sickle cell gene from the other parent. A sickle cell trait is
not a disease, but when both parents have the sickle cell  trait,  there
is  a 1 in 4 chance with each pregnancy that the child will be born with
SCD.

 EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
                      [ ] is old law to be omitted.
                                                           LBD04153-02-6

S. 3256--A                          2

  (5) Children with SCD may exhibit frequent pain  episodes,  entrapment
of  blood  within  the  spleen,  severe anemia, acute lung complications
(acute chest syndrome), and priapism. During episodes  of  severe  pain,
spleen  enlargement,  or  acute  lung  complications,  life  threatening
complications  can  develop rapidly.  Children with SCD are also at risk
for septicemia, meningitis, and stroke. Children  with  SCD  at  highest
risk  for stroke can be identified and, thus, treated early with regular
blood transfusions for stroke prevention.
  (6) The most feared complication for children with  SCD  is  a  stroke
(either  overt  or  silent) occurring in 30 percent of the children with
sickle cell anemia prior to their 18th birthday and occurring in infants
as young as 18 months of age. Students with SCD and silent  strokes  may
not  have  any  physical signs of such disease or strokes but may have a
lower educational attainment when compared to children with SCD.
  (7) Many adults with SCD have acute problems, such  as  frequent  pain
episodes  and  acute  lung complications (acute chest syndrome) that can
result in death. Adults with SCD  can  also  develop  chronic  problems,
including pulmonary disease, pulmonary hypertension, degenerative chang-
es  in  the  shoulder  and  hip joints (bone necrosis), poor vision, and
kidney failure.
  (8) The average life span for an adult with SCD is 45-50 years.  While
some patients can remain without symptoms for years, many others may not
survive  infancy  or  early childhood. Causes of death include bacterial
infection, stroke, and lung, kidney, heart, or liver failure.  Bacterial
infections and lung injuries are leading causes of death in children and
adults with SCD.
  (9)  As  a  complex  disorder  with  multisystem  manifestations,  SCD
requires specialized comprehensive and continuous care  to  achieve  the
best possible outcome. Newborn screening, genetic counseling, and educa-
tion  of  patients and family members are critical preventative measures
that decrease morbidity and mortality, delays or prevents complications,
reduces in-patient hospital stays, and decreases overall costs of care.
  (10) Stroke in the adult  SCD  population  commonly  results  in  both
mental and physical disabilities for life.
  (11)  Currently,  one  of  the most effective treatments to prevent or
treat an overt stroke or a silent stroke for a  child  with  SCD  is  at
least  monthly  blood  transfusions  throughout  childhood for many, and
throughout life for some. This requires the removal of sickle cell blood
and replacement with normal blood (exchange transfusion).
  (12) With acute lung  complications  (acute  chest  syndrome),  trans-
fusions are usually required and are often the only therapy demonstrated
to prevent premature death.
  The  legislature declares its intent to develop and establish systemic
mechanisms to improve  the  prevention  and  treatment  of  sickle  cell
disease.
  S 3. Section 365 of the social services law is amended by adding a new
subdivision 13 to read as follows:
  13.  ANY  INCONSISTENT PROVISION OF THIS CHAPTER OR OTHER LAW NOTWITH-
STANDING, THE DEPARTMENT SHALL BE  RESPONSIBLE  FOR  FURNISHING  MEDICAL
ASSISTANCE  FOR  PREVENTATIVE MEDICAL STRATEGIES, INCLUDING PROPHYLAXIS,
AND TREATMENT AND SERVICES FOR ELIGIBLE INDIVIDUALS WHO HAVE SICKLE CELL
DISEASE. FOR THE PURPOSES OF  THIS  SUBDIVISION,  "PREVENTATIVE  MEDICAL
STRATEGIES, TREATMENT AND SERVICES" SHALL INCLUDE, BUT NOT BE LIMITED TO
THE FOLLOWING:

S. 3256--A                          3

  (A) CHRONIC BLOOD TRANSFUSION (WITH DEFEROXAMINE CHELATION) TO PREVENT
STROKE  IN INDIVIDUALS WITH SICKLE CELL DISEASE WHO HAVE BEEN IDENTIFIED
AS BEING AT HIGH RISK FOR STROKE;
  (B)  GENETIC  COUNSELING  AND TESTING FOR INDIVIDUALS WITH SICKLE CELL
DISEASE OR THE SICKLE CELL TRAIT; OR
  (C) OTHER TREATMENT AND SERVICES TO PREVENT INDIVIDUALS WHO HAVE SICK-
LE CELL DISEASE AND WHO HAVE HAD A STROKE FROM HAVING ANOTHER STROKE.
  S 4. Article 31 of the public health law is amended by  adding  a  new
title IV to read as follows:
                                TITLE IV
  PREVENTION AND TREATMENT OF SICKLE CELL DISEASE DEMONSTRATION PROGRAM
SECTION 3126. PREVENTION  AND  TREATMENT  OF  SICKLE CELL DISEASE DEMON-
                STRATION PROGRAM.
  S 3126. PREVENTION AND TREATMENT OF SICKLE CELL DISEASE  DEMONSTRATION
PROGRAM.  1.  THE  COMMISSIONER SHALL ESTABLISH AND CONDUCT A PREVENTION
AND TREATMENT OF SICKLE CELL DISEASE DEMONSTRATION PROGRAM IN  THE  CITY
OF  NEW  YORK  AND  FOR  NO  MORE THAN FIVE ADDITIONAL COUNTIES, FOR THE
PURPOSE OF DEVELOPING AND ESTABLISHING SYSTEMIC  MECHANISMS  TO  IMPROVE
THE PREVENTION AND TREATMENT OF SICKLE CELL DISEASE, INCLUDING THROUGH:
  (A)  THE  COORDINATION OF SERVICE DELIVERY FOR INDIVIDUALS WITH SICKLE
CELL DISEASE;
  (B) GENETIC COUNSELING AND TESTING;
  (C) BUNDLING OF TECHNICAL  SERVICES  RELATED  TO  THE  PREVENTION  AND
TREATMENT OF SICKLE CELL DISEASE;
  (D) TRAINING OF HEALTH PROFESSIONALS; AND
  (E)  IDENTIFYING  AND ESTABLISHING OTHER EFFORTS RELATED TO THE EXPAN-
SION AND COORDINATION OF EDUCATION, TREATMENT, AND  CONTINUITY  OF  CARE
PROGRAMS FOR INDIVIDUALS WITH SICKLE CELL DISEASE.
  2.  ON  OR  BEFORE  THE  FIRST  OF JANUARY, TWO THOUSAND EIGHTEEN, THE
COMMISSIONER SHALL REPORT TO THE GOVERNOR, THE SPEAKER OF  THE  ASSEMBLY
AND  THE  TEMPORARY  PRESIDENT  OF  THE  SENATE  ON  THE IMPACT THAT THE
PREVENTION AND TREATMENT OF SICKLE CELL  DISEASE  DEMONSTRATION  PROGRAM
HAS  HAD  ON  INDIVIDUALS WITH SICKLE CELL DISEASE IN REGARDS TO COORDI-
NATION OF SERVICE DELIVERY, GENETIC COUNSELING AND TESTING, BUNDLING  OF
TECHNICAL  SERVICES  RELATED  TO  THE PREVENTION AND TREATMENT OF SICKLE
CELL DISEASE, TRAINING OF HEALTH PROFESSIONALS  AND  THE  IDENTIFICATION
AND  ESTABLISHMENT OF OTHER EFFORTS RELATED TO THE EXPANSION AND COORDI-
NATION OF EDUCATION, TREATMENT, AND CONTINUITY OF CARE PROGRAMS FOR SUCH
INDIVIDUALS.
  S 5. The sum of one million dollars ($1,000,000) is  hereby  appropri-
ated to the department of health out of any moneys in the state treasury
in  the  general  fund  to the credit of the state purposes account, not
otherwise appropriated, and made immediately available, for the  purpose
of carrying out the provisions of this act. Such moneys shall be payable
on  the  audit  and  warrant of the comptroller on vouchers certified or
approved by the commissioner of health in the manner prescribed by law.
  S 6. This act shall take effect immediately.

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2015-S3256B (ACTIVE) - Details

Current Committee:: Senate Finance
Law Section:: Appropriations
Laws Affected:: Amd §365, Soc Serv L; add Art 31 Title IV §3126, Pub Health L
Versions Introduced in Other Legislative Sessions:: 2013-2014: S6239
2017-2018: S4054
2019-2020: S2281

2015-S3256B (ACTIVE) - Summary

Establishes the sickle cell treatment act of 2016; makes an appropriation of one million dollars.

2015-S3256B (ACTIVE) - Sponsor Memo

                                 BILL NUMBER:  S3256B

 TITLE OF BILL :  An act to amend the social services law and the
public health law, in relation to establishing the sickle cell
treatment act of 2016; and making an appropriation therefor

 PURPOSE :

To include primary and secondary preventative medical strategies,
treatment, and services, including genetic counseling and testing, for
individuals who have Sickle Cell Disease in the City of New York and
for no more than five counties.

 SUMMARY OF PROVISIONS :

Section 1 of the bill names the bill the Sickle Cell Treatment Act of
2016.

Section 2 of the bill outlines what Sickle Cell Disease is, how it is
an inherited disease and the number of people afflicted.

Section 3 of the bill amends Section 36.5 of social services law by
adding a new subdivision number 13. New subdivision 13 provides that
the health Department shall be responsible for furnishing medical
assistance and counseling for prevention of the spread of sickle cell
disease and medical services for eligible individuals who are

afflicted with sickle cell disease.

Section 4 amends the public health law by adding a new Title 4
entitled, "Prevention and Treatment of Sickle Cell Disease
Demonstration Program" to section 3126. Section 3126 states that the
commissioner shall establish and conduct a prevention and treatment of
sickle cell disease demonstration program in the city of New York and
for no more than five other counties for the purpose of developing and
establishing systemic mechanisms to improve the prevention and
treatment of sickle cell disease through the coordination of service
delivery for individuals with sickle cell disease, genetic counseling
and testing, bundling of technical services related to the prevention
and treatment of sickle cell disease, training of health
professionals, and identifying and establishing other efforts related
to the expansion and coordination of education, treatment, and
continuity of care programs for individuals with sickle cell disease.

Section 5 appropriates one million dollars to the department of health
to carry out the demonstration program.

 EXISTING LAW :

Such program does not exist under current law.

 JUSTIFICATION :

Sickle Cell Disease changes normal, round red blood cells into cells
that can be shaped like a sickle. A sickle is a farm tool with a
curved blade that is mainly used to cut grain crops. Normal red blood
cells move easily through blood vessels carrying oxygen. Sickle cells,
however, can get stuck in the blood stream and stop the oxygen being
transported. Sickle Cell Disease can cause a lot of pain and harm
organs, muscles and bones.

Sickle cell disease means a lifelong battle against the health
problems it can cause, such as pain, infections, anemia, and stroke.

Sickle Cell Disease is inherited, which means it is passed from parent
to child. To get sickle cell disease, a child has to inherit two
sickle cell genes-one from each parent. When a child inherits the gene
from just one parent, that child has sickle cell trait. Having this
trait means that you do not have the disease but you are a carrier and
could pass the gene on to your children.

Approximately 100,000 Americans have Sickle Cell Disease and
approximately 1,000 American babies are born with the disease each
year. Sickle Cell Disease also is a global problem with close to
500,000 babies born annually with the disease. In the United States,
Sickle Cell Disease is most common in Americans of African descent and
in those of Hispanic, Mediterranean and Middle Eastern ancestry.
Among newborn American infants, Sickle Cell Disease occurs in
approximately 1 in 500 Americans of African descent, 1 in 36,000
Hispanics, and 1 in 80,000 Caucasians. More than 3,000,000 Americans,
mostly Americans of African descent, have the sickle cell trait.

Sickle Cell Disease was once considered a juvenile disease as the life
expectancy of someone with the disease was usually the late teens or
early twenties. However, with advances in medicine, the average life
span is now between 45 and 50 years.

Due to its history as a juvenile disease, there is a lack of research
and services for adults afflicted with the disease. This bill would
provide preventative medical strategies, treatment and services to
juveniles and adults with Sickle Cell Disease, In addition to the
medical services provided, this bill will encourage and support
testing to determine carriers of the Sickle Cell trait to stop the
spread of the disease. To this end, the commissioner of health shall
establish and conduct a prevention and treatment of sickle cell
disease demonstration program in The City of New York and in no more
than five other counties, for the purpose of developing and
establishing systemic mechanisms to improve the prevention and
treatment of Sickle Cell Disease.

This version of the bill adds New York statistics to the legislative
findings, further emphasizing the need to take action in this state.

 LEGISLATIVE HISTORY :

New bill

 FISCAL IMPLICATIONS :

Appropriation of $1 million.

 LOCAL FISCAL IMPLICATIONS :

None

 EFFECTIVE DATE :
This act shall take effect immediately.

2015-S3256B (ACTIVE) - Bill Text download pdf

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

                                 3256--B

                       2015-2016 Regular Sessions

                            I N  S E N A T E

                            February 4, 2015
                               ___________

Introduced by Sens. SANDERS, DILAN, HAMILTON, HASSELL-THOMPSON, LATIMER,
  PARKER, PERKINS -- read twice and ordered printed, and when printed to
  be committed to the Committee on Finance -- recommitted to the Commit-
  tee  on  Finance in accordance with Senate Rule 6, sec. 8 -- committee
  discharged, bill amended, ordered reprinted as amended and recommitted
  to said committee  --  committee  discharged,  bill  amended,  ordered
  reprinted as amended and recommitted to said committee

AN  ACT  to  amend the social services law and the public health law, in
  relation to establishing the sickle cell treatment act  of  2016;  and
  making an appropriation therefor

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

  Section 1. This act shall be known and may be  cited  as  the  "sickle
cell treatment act of 2016".
  S  2.  Legislative findings. The legislature hereby finds and declares
the following:
  (1) Sickle cell disease (SCD) is an inherited  disease  of  red  blood
cells and is a major health problem in the United States.
  (2) Approximately 100,000 Americans have SCD with approximately 10% of
SCD  patients residing in New York state (NYS).  In NYS, 1 in 1,146 live
births have sickle cell disease, with 12% of  NYS  sickle  cell  disease
births  in the Hispanic population. Higher birth rates for children with
sickle cell disease in NYS occur in mothers born outside of  the  United
States.    Approximately 1,000 American babies are born with the disease
each year. SCD also is a global problem with  close  to  500,000  babies
born annually with the disease.
  (3)  In the United States, SCD is most common in African-Americans and
in those of Hispanic, Mediterranean, and Middle Eastern ancestry.  Among
newborn  American  infants  nationally, SCD occurs in approximately 1 in
500 African-Americans, 1 in 36,000 Hispanics, and  1  in  80,000  Cauca-
sians.    In  NYS, sickle cell disease occurs in 1 in 230 live births to

 EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
                      [ ] is old law to be omitted.
                                                           LBD04153-04-6

S. 3256--B                          2

non-Hispanic black mothers, 1 in 2,320 births to Hispanic mothers and  1
in 41,647 births to Caucasian mothers.
  (4)  More than 3,000,000 Americans, mostly African-Americans, have the
sickle cell trait. These Americans are carriers of the sickle cell  gene
who  have  inherited  the normal hemoglobin gene from one parent and the
sickle cell gene from the other parent. A sickle cell  trait  is  not  a
disease,  but  when both parents have the sickle cell trait (SCT), there
is a 1 in 4 chance with each pregnancy that the child will be born  with
SCD.    However,  SCT  has  its own subtle complications and can also be
deadly.
  (5) Since SCD is a blood disorder and blood goes to all parts  of  the
body,  people  with  SCD  may  exhibit complications in all parts of the
body. This includes, but is  not  limited  to  frequent  pain  episodes,
entrapment of blood within the spleen, severe anemia, acute lung compli-
cations  (acute chest syndrome), and priapism. During episodes of severe
pain, spleen enlargement, or acute lung complications, life  threatening
complications  can  develop rapidly.  Children with SCD are also at risk
for infections of the blood, meningitis, and stroke. Children  with  SCD
at  highest  risk  for stroke can be identified and, thus, treated early
with regular blood transfusions for stroke prevention.
  (6) The most feared complication for children with SCD  is  a  stroke.
Stroke  can either be silent (no overt symptoms) or clinical (with symp-
toms) and can affect children as young as 18 months of age. Up to 40% of
children will have had either a silent or clinical stroke by the age  of
18.  This  impacts  their  ability to learn and/or hold a job.  SCD is a
cumulative disease with worsening complications and  organ  involvement,
including lungs, heart and kidneys, as patients age.
  (7)  Many  adults  with SCD have acute problems, such as frequent pain
episodes and acute lung complications (acute chest  syndrome)  that  can
result  in  death.  Adults  with  SCD can also develop chronic problems,
including pulmonary disease, pulmonary hypertension, degenerative chang-
es in the shoulder and hip joints  (bone  necrosis),  poor  vision,  and
kidney failure.
  (8)  The  median life expectancy for SCD is about 45 years. While some
patients can remain without symptoms for  years,  many  others  may  not
survive  infancy  or  early childhood. Causes of death include bacterial
infection, stroke, and lung, kidney, heart, or liver failure.  Bacterial
infections and lung injuries are leading causes of death in children and
adults with SCD.
  (9)  As  a  complex  disorder  with  multisystem  manifestations,  SCD
requires specialized comprehensive and continuous care  to  achieve  the
best possible outcome. Newborn screening, genetic counseling, and educa-
tion  of  patients and family members are critical preventative measures
that decrease morbidity and mortality, delays or prevents complications,
reduces in-patient hospital stays, and decreases overall costs of care.
  The legislature declares its intent to develop and establish  systemic
mechanisms  to  improve  the  prevention  and  treatment  of sickle cell
disease.
  S 3. Section 365 of the social services law is amended by adding a new
subdivision 13 to read as follows:
  13. ANY INCONSISTENT PROVISION OF THIS CHAPTER OR OTHER  LAW  NOTWITH-
STANDING,  THE  DEPARTMENT  SHALL  BE RESPONSIBLE FOR FURNISHING MEDICAL
ASSISTANCE FOR PREVENTATIVE MEDICAL STRATEGIES,  INCLUDING  PROPHYLAXIS,
AND TREATMENT AND SERVICES FOR ELIGIBLE INDIVIDUALS WHO HAVE SICKLE CELL
DISEASE.  FOR  THE  PURPOSES  OF THIS SUBDIVISION, "PREVENTATIVE MEDICAL

S. 3256--B                          3

STRATEGIES, TREATMENT AND SERVICES" SHALL INCLUDE, BUT NOT BE LIMITED TO
THE FOLLOWING:
  (A) CHRONIC BLOOD TRANSFUSION (WITH DEFEROXAMINE CHELATION) TO PREVENT
STROKE  IN INDIVIDUALS WITH SICKLE CELL DISEASE WHO HAVE BEEN IDENTIFIED
AS BEING AT HIGH RISK FOR STROKE;
  (B) GENETIC COUNSELING AND TESTING FOR INDIVIDUALS  WITH  SICKLE  CELL
DISEASE OR THE SICKLE CELL TRAIT; OR
  (C) OTHER TREATMENT AND SERVICES TO PREVENT INDIVIDUALS WHO HAVE SICK-
LE CELL DISEASE AND WHO HAVE HAD A STROKE FROM HAVING ANOTHER STROKE.
  S  4.  Article  31 of the public health law is amended by adding a new
title IV to read as follows:
                                TITLE IV
  PREVENTION AND TREATMENT OF SICKLE CELL DISEASE DEMONSTRATION PROGRAM
SECTION 3126. PREVENTION AND TREATMENT OF  SICKLE  CELL  DISEASE  DEMON-
                STRATION PROGRAM.
  S  3126. PREVENTION AND TREATMENT OF SICKLE CELL DISEASE DEMONSTRATION
PROGRAM. 1. THE COMMISSIONER SHALL ESTABLISH AND  CONDUCT  A  PREVENTION
AND  TREATMENT  OF SICKLE CELL DISEASE DEMONSTRATION PROGRAM IN THE CITY
OF NEW YORK AND FOR NO MORE  THAN  FIVE  ADDITIONAL  COUNTIES,  FOR  THE
PURPOSE  OF  DEVELOPING  AND ESTABLISHING SYSTEMIC MECHANISMS TO IMPROVE
THE PREVENTION AND TREATMENT OF SICKLE CELL DISEASE, INCLUDING THROUGH:
  (A) THE COORDINATION OF SERVICE DELIVERY FOR INDIVIDUALS  WITH  SICKLE
CELL DISEASE;
  (B) GENETIC COUNSELING AND TESTING;
  (C)  BUNDLING  OF  TECHNICAL  SERVICES  RELATED  TO THE PREVENTION AND
TREATMENT OF SICKLE CELL DISEASE;
  (D) TRAINING OF HEALTH PROFESSIONALS; AND
  (E) IDENTIFYING AND ESTABLISHING OTHER EFFORTS RELATED TO  THE  EXPAN-
SION  AND  COORDINATION  OF EDUCATION, TREATMENT, AND CONTINUITY OF CARE
PROGRAMS FOR INDIVIDUALS WITH SICKLE CELL DISEASE.
  2. ON OR BEFORE THE FIRST  OF  JANUARY,  TWO  THOUSAND  EIGHTEEN,  THE
COMMISSIONER  SHALL  REPORT TO THE GOVERNOR, THE SPEAKER OF THE ASSEMBLY
AND THE TEMPORARY PRESIDENT  OF  THE  SENATE  ON  THE  IMPACT  THAT  THE
PREVENTION  AND  TREATMENT  OF SICKLE CELL DISEASE DEMONSTRATION PROGRAM
HAS HAD ON INDIVIDUALS WITH SICKLE CELL DISEASE IN  REGARDS  TO  COORDI-
NATION  OF SERVICE DELIVERY, GENETIC COUNSELING AND TESTING, BUNDLING OF
TECHNICAL SERVICES RELATED TO THE PREVENTION  AND  TREATMENT  OF  SICKLE
CELL  DISEASE,  TRAINING  OF HEALTH PROFESSIONALS AND THE IDENTIFICATION
AND ESTABLISHMENT OF OTHER EFFORTS RELATED TO THE EXPANSION AND  COORDI-
NATION OF EDUCATION, TREATMENT, AND CONTINUITY OF CARE PROGRAMS FOR SUCH
INDIVIDUALS.
  S  5.  The sum of one million dollars ($1,000,000) is hereby appropri-
ated to the department of health out of any moneys in the state treasury
in the general fund to the credit of the  state  purposes  account,  not
otherwise  appropriated, and made immediately available, for the purpose
of carrying out the provisions of this act. Such moneys shall be payable
on the audit and warrant of the comptroller  on  vouchers  certified  or
approved by the commissioner of health in the manner prescribed by law.
  S 6. This act shall take effect immediately.

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Senate Bill S3256B

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Archive: Last Bill Status - In Senate Committee Finance Committee

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