A08339 Summary:

BILL NO    A08339 

SAME AS    SAME AS S03256

SPONSOR    Clark

COSPNSR    

MLTSPNSR   

Amd S365, Soc Serv L; add Art 31 Title IV S3126, Pub Health L

Establishes the sickle cell treatment act of 2015; makes an appropriation of
one million dollars.
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A08339 Actions:

BILL NO    A08339 

08/05/2015 referred to health
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A08339 Votes:

There are no votes for this bill in this legislative session.
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A08339 Memo:

BILL NUMBER:A8339

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 OR GENERAL IDEA OF BILL: 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 SPECIFIC PROVISIONS:

Section 365 of social services law amended by adding two new
subdivisions 13 and 14 Sub-section 3, subdivision 13: The health
Department shall be responsible for furnishing medical assistance for
preventative medical strategies. Preventative medical strategies and
medical services include chronic blood transfusion to prevent stroke
in those with a high risk for it, genetic counseling, and other
treatments.

Sub-section 4: The Commissioner of Health shall establish and conduct
prevention and treatment of sickle cell disease demonstration program
in the City of New York and no more than five counties.

On or before the first of January, two thousand fifteen the
Commissioner of Health shall report to the governor, speaker of the
assembly and temporary the Senate about the expansion and coordination
of sickle cell disease programs, service delivery, training of health
professionals and continuity of care programs.

JUSTIFICATION:  Sickle Cell Disease (in this section referred to as
'SCD') is an inherited disease of red blood cells that is a major
health problem in the United States.

Approximately 70,000 Americans have SCD and approximately 1,800
American babies are born with the disease each year. SCD also is a
global problem with close to 300,000 babies born annually with the
disease.

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 300
African-Americans, 1 in 36,000 Hispanics, and 1 in 80,000 Caucasians.
More than 2,500,000 Americans, mostly African-Americans, have the
sickle cell trait. These Americans are healthy carriers of the sickle
cell gene who have inherited the nodlial hemoglobin gene from 1 parent
and the sickle 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.

Children with SED may exhibit frequent pain episodes, entrapment of
blood within the spleen, severe anemia, acute lung complications, and
pliapism. 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.

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 and no
strokes. Approximately 60 percent of students with silent strokes have
difficulty in school, require special education, or both.

Many adults with SCD have acute problems, such as frequent pain
episodes and acute lung complications that can result in death.
Adults with SCD can also develop chronic problems, including pulmonary
disease, pulmonary hypertension, degenerative changes in the shoulder
and hip joints, poor vision, and kidney failure.

The average life span for an adult with SCD is the mid-40s. 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.

It has been long overdue for significant treatment for Sickle Cell
Disease to be available to New York State residents. This legislation
will seek to remedy this problem by having the Health Commissioner
develop programs and treatment options for children and adults. It
will try to alleviate some of the health disparities minorities
especially African-Americans face.

PRIOR LEGISLATIVE HISTORY:NONE

FISCAL IMPLICATIONS:Appropriation of $1 million.

EFFECTIVE DATE:This act shall take effect immediately.
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A08339 Text:

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

                                         8339

                              2015-2016 Regular Sessions

                                 I N  A S S E M B L Y

                                    August 5, 2015
                                      ___________

       Introduced  by M. of A. CLARK -- read once and referred to the Committee
         on Health

       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:

    1    Section  1.  This  act  shall be known and may be cited as the "sickle
    2  cell treatment act of 2015".
    3    S 2. Legislative findings. The legislature hereby finds  and  declares
    4  the following:
    5    (1)  Sickle  cell  disease  (SCD) is an inherited disease of red blood
    6  cells that is a major health problem in the United States.
    7    (2) Approximately 100,000 Americans have SCD and  approximately  1,000
    8  American  babies  are  born  with  the  disease each year. SCD also is a
    9  global problem with close to  500,000  babies  born  annually  with  the
   10  disease.
   11    (3)  In the United States, SCD is most common in African-Americans and
   12  in those of Hispanic, Mediterranean, and Middle Eastern ancestry.  Among
   13  newborn  American infants, SCD occurs in approximately 1 in 500 African-
   14  Americans, 1 in 36,000 Hispanics, and 1 in 80,000 Caucasians.
   15    (4) More than 3,000,000 Americans, mostly African-Americans, have  the
   16  sickle  cell  trait.  These Americans are healthy carriers of the sickle
   17  cell gene who have inherited the normal hemoglobin gene from one  parent
   18  and  the  sickle cell gene from the other parent. A sickle cell trait is
   19  not a disease, but when both parents have the sickle cell  trait,  there
   20  is  a 1 in 4 chance with each pregnancy that the child will be born with
   21  SCD.
   22    (5) Children with SCD may exhibit frequent pain  episodes,  entrapment
   23  of  blood  within  the  spleen,  severe anemia, acute lung complications
   24  (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
       A. 8339                             2

    1  spleen  enlargement,  or  acute  lung  complications,  life  threatening
    2  complications can develop rapidly.  Children with SCD are also  at  risk
    3  for  septicemia,  meningitis,  and  stroke. Children with SCD at highest
    4  risk  for stroke can be identified and, thus, treated early with regular
    5  blood transfusions for stroke prevention.
    6    (6) The most feared complication for children with  SCD  is  a  stroke
    7  (either  overt  or  silent) occurring in 30 percent of the children with
    8  sickle cell anemia prior to their 18th birthday and occurring in infants
    9  as young as 18 months of age. Students with SCD and silent  strokes  may
   10  not  have  any  physical signs of such disease or strokes but may have a
   11  lower educational attainment when compared to children with SCD.
   12    (7) Many adults with SCD have acute problems, such  as  frequent  pain
   13  episodes  and  acute  lung complications (acute chest syndrome) that can
   14  result in death. Adults with SCD  can  also  develop  chronic  problems,
   15  including pulmonary disease, pulmonary hypertension, degenerative chang-
   16  es  in  the  shoulder  and  hip joints (bone necrosis), poor vision, and
   17  kidney failure.
   18    (8) The average life span for an adult with SCD is 45-50 years.  While
   19  some patients can remain without symptoms for years, many others may not
   20  survive  infancy  or  early childhood. Causes of death include bacterial
   21  infection, stroke, and lung, kidney, heart, or liver failure.  Bacterial
   22  infections and lung injuries are leading causes of death in children and
   23  adults with SCD.
   24    (9)  As  a  complex  disorder  with  multisystem  manifestations,  SCD
   25  requires specialized comprehensive and continuous care  to  achieve  the
   26  best possible outcome. Newborn screening, genetic counseling, and educa-
   27  tion  of  patients and family members are critical preventative measures
   28  that decrease morbidity and mortality, delays or prevents complications,
   29  reduces in-patient hospital stays, and decreases overall costs of care.
   30    (10) Stroke in the adult  SCD  population  commonly  results  in  both
   31  mental and physical disabilities for life.
   32    (11)  Currently,  one  of  the most effective treatments to prevent or
   33  treat an overt stroke or a silent stroke for a  child  with  SCD  is  at
   34  least  monthly  blood  transfusions  throughout  childhood for many, and
   35  throughout life for some. This requires the removal of sickle cell blood
   36  and replacement with normal blood (exchange transfusion).
   37    (12) With acute lung  complications  (acute  chest  syndrome),  trans-
   38  fusions are usually required and are often the only therapy demonstrated
   39  to prevent premature death.
   40    The  legislature declares its intent to develop and establish systemic
   41  mechanisms to improve  the  prevention  and  treatment  of  sickle  cell
   42  disease.
   43    S 3. Section 365 of the social services law is amended by adding a new
   44  subdivision 13 to read as follows:
   45    13.  ANY  INCONSISTENT PROVISION OF THIS CHAPTER OR OTHER LAW NOTWITH-
   46  STANDING, THE DEPARTMENT SHALL BE  RESPONSIBLE  FOR  FURNISHING  MEDICAL
   47  ASSISTANCE  FOR  PREVENTATIVE MEDICAL STRATEGIES, INCLUDING PROPHYLAXIS,
   48  AND TREATMENT AND SERVICES FOR ELIGIBLE INDIVIDUALS WHO HAVE SICKLE CELL
   49  DISEASE. FOR THE PURPOSES OF  THIS  SUBDIVISION,  "PREVENTATIVE  MEDICAL
   50  STRATEGIES, TREATMENT AND SERVICES" SHALL INCLUDE, BUT NOT BE LIMITED TO
   51  THE FOLLOWING:
   52    (A) CHRONIC BLOOD TRANSFUSION (WITH DEFEROXAMINE CHELATION) TO PREVENT
   53  STROKE  IN INDIVIDUALS WITH SICKLE CELL DISEASE WHO HAVE BEEN IDENTIFIED
   54  AS BEING AT HIGH RISK FOR STROKE;
   55    (B) GENETIC COUNSELING AND TESTING FOR INDIVIDUALS  WITH  SICKLE  CELL
   56  DISEASE OR THE SICKLE CELL TRAIT; OR
       A. 8339                             3

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