senate Bill S6239A

2013-2014 Legislative Session

Establishes the sickle cell treatment act of 2014; appropriation

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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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Actions

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Assembly Actions - Lowercase
Senate Actions - UPPERCASE
Aug 11, 2014 print number 6239a
amend and recommit to finance
Jan 08, 2014 referred to finance

Bill Amendments

Original
A (Active)
Original
A (Active)

S6239 - Bill Details

Current Committee:
Senate Finance
Law Section:
Appropriations
Laws Affected:
Amd §365, Soc Serv L; add Art 31 Title IV §3126, Pub Health L

S6239 - Bill Texts

view summary

Establishes the sickle cell treatment act of 2014; makes an appropriation of one million dollars.

view sponsor memo
BILL NUMBER:S6239

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 2014; 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 365 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.

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

                                  6239

                            I N  S E N A T E

                               (PREFILED)

                             January 8, 2014
                               ___________

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 2014; 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 2014".
  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,
spleen  enlargement,  or  acute  lung  complications,  life  threatening
complications can develop rapidly.  Children with SCD are also  at  risk

 EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
                      [ ] is old law to be omitted.
                                                           LBD10055-06-4

S. 6239                             2

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, delaying or preventing compli-
cations, in-patient hospital stays, and increased 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
  (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. 6239                             3

  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 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

S6239A (ACTIVE) - Bill Details

Current Committee:
Senate Finance
Law Section:
Appropriations
Laws Affected:
Amd §365, Soc Serv L; add Art 31 Title IV §3126, Pub Health L

S6239A (ACTIVE) - Bill Texts

view summary

Establishes the sickle cell treatment act of 2014; makes an appropriation of one million dollars.

view sponsor memo
BILL NUMBER:S6239A

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 2014; 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.

view full text
download pdf
                    S T A T E   O F   N E W   Y O R K
________________________________________________________________________

                                 6239--A

                            I N  S E N A T E

                               (PREFILED)

                             January 8, 2014
                               ___________

Introduced  by  Sen. SANDERS -- read twice and ordered printed, and when
  printed to be committed to  the  Committee  on  Finance  --  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  2014;  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 2014".
  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.
                                                           LBD10055-07-4

S. 6239--A                          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. 6239--A                          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.

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