A08339 Summary:

BILL NO    A08339A

SAME AS    
SAME AS S03256-A

SPONSOR    Clark

COSPNSR    Mayer

MLTSPNSR   Simotas


Amd 365, Soc Serv L; add Art 31 Title IV 3126, Pub Health L


Establishes the sickle cell treatment act of 2016; makes an appropriation
of
one million dollars.
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A08339 Actions:

BILL NO    A08339A

08/05/2015 referred to health
01/06/2016 referred to health
01/20/2016 amend (t) and recommit to health
01/20/2016 print number 8339a
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A08339 Votes:

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

NEW YORK STATE ASSEMBLY
MEMORANDUM IN SUPPORT OF LEGISLATION
submitted in accordance with Assembly Rule III, Sec 1(f)
 
BILL NUMBER: A8339A
 
SPONSOR: Clark
  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, treat- ment, and services, including genetic counseling and testing, for indi- viduals 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 estab- lish 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, howev- er, can get stuck in the blood stream and stop the oxygen being trans- ported. 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 approxi- mately 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 juve- niles 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.   FISCAL IMPLICATIONS: Appropriation of $1 million.   LOCAL FISCAL IMPLICATIONS: None   EFFECTIVE DATE: This act shall take effect immediately.
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A08339 Text:



 
                STATE OF NEW YORK
        ________________________________________________________________________
 
                                         8339--A
 
                               2015-2016 Regular Sessions
 
                   IN ASSEMBLY
 
                                     August 5, 2015
                                       ___________
 
        Introduced  by  M.  of A. CLARK, MAYER -- Multi-Sponsored by -- M. of A.
          SIMOTAS -- read once and referred to the Committee on Health -- recom-
          mitted to the Committee on Health in accordance with Assembly Rule  3,
          sec.  2  --  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:
 
     1    Section  1.  This  act  shall be known and may be cited as the "sickle
     2  cell treatment act of 2016".
     3    § 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.
 
         EXPLANATION--Matter in italics (underscored) is new; matter in brackets
                              [ ] is old law to be omitted.

                                                                   LBD04153-03-6

        A. 8339--A                          2
 
     1    (5) Children with SCD may exhibit frequent pain  episodes,  entrapment
     2  of  blood  within  the  spleen,  severe anemia, acute lung complications
     3  (acute chest syndrome), and priapism. During episodes  of  severe  pain,
     4  spleen  enlargement,  or  acute  lung  complications,  life  threatening
     5  complications  can  develop rapidly.  Children with SCD are also at risk
     6  for septicemia, meningitis, and stroke. Children  with  SCD  at  highest
     7  risk  for stroke can be identified and, thus, treated early with regular
     8  blood transfusions for stroke prevention.
     9    (6) The most feared complication for children with  SCD  is  a  stroke
    10  (either  overt  or  silent) occurring in 30 percent of the children with

    11  sickle cell anemia prior to their 18th birthday and occurring in infants
    12  as young as 18 months of age. Students with SCD and silent  strokes  may
    13  not  have  any  physical signs of such disease or strokes but may have a
    14  lower educational attainment when compared to children with SCD.
    15    (7) Many adults with SCD have acute problems, such  as  frequent  pain
    16  episodes  and  acute  lung complications (acute chest syndrome) that can
    17  result in death. Adults with SCD  can  also  develop  chronic  problems,
    18  including pulmonary disease, pulmonary hypertension, degenerative chang-
    19  es  in  the  shoulder  and  hip joints (bone necrosis), poor vision, and
    20  kidney failure.
    21    (8) The average life span for an adult with SCD is 45-50 years.  While
    22  some patients can remain without symptoms for years, many others may not
    23  survive  infancy  or  early childhood. Causes of death include bacterial

    24  infection, stroke, and lung, kidney, heart, or liver failure.  Bacterial
    25  infections and lung injuries are leading causes of death in children and
    26  adults with SCD.
    27    (9)  As  a  complex  disorder  with  multisystem  manifestations,  SCD
    28  requires specialized comprehensive and continuous care  to  achieve  the
    29  best possible outcome. Newborn screening, genetic counseling, and educa-
    30  tion  of  patients and family members are critical preventative measures
    31  that decrease morbidity and mortality, delays or prevents complications,
    32  reduces in-patient hospital stays, and decreases overall costs of care.
    33    (10) Stroke in the adult  SCD  population  commonly  results  in  both
    34  mental and physical disabilities for life.
    35    (11)  Currently,  one  of  the most effective treatments to prevent or
    36  treat an overt stroke or a silent stroke for a  child  with  SCD  is  at

    37  least  monthly  blood  transfusions  throughout  childhood for many, and
    38  throughout life for some. This requires the removal of sickle cell blood
    39  and replacement with normal blood (exchange transfusion).
    40    (12) With acute lung  complications  (acute  chest  syndrome),  trans-
    41  fusions are usually required and are often the only therapy demonstrated
    42  to prevent premature death.
    43    The  legislature declares its intent to develop and establish systemic
    44  mechanisms to improve  the  prevention  and  treatment  of  sickle  cell
    45  disease.
    46    § 3. Section 365 of the social services law is amended by adding a new
    47  subdivision 13 to read as follows:
    48    13.  Any  inconsistent provision of this chapter or other law notwith-
    49  standing, the department shall be  responsible  for  furnishing  medical

    50  assistance  for  preventative medical strategies, including prophylaxis,
    51  and treatment and services for eligible individuals who have sickle cell
    52  disease. For the purposes of  this  subdivision,  "preventative  medical
    53  strategies, treatment and services" shall include, but not be limited to
    54  the following:

        A. 8339--A                          3
 
     1    (a) chronic blood transfusion (with deferoxamine chelation) to prevent
     2  stroke  in individuals with sickle cell disease who have been identified
     3  as being at high risk for stroke;
     4    (b)  genetic  counseling  and testing for individuals with sickle cell
     5  disease or the sickle cell trait; or
     6    (c) other treatment and services to prevent individuals who have sick-

     7  le cell disease and who have had a stroke from having another stroke.
     8    § 4. Article 31 of the public health law is amended by  adding  a  new
     9  title IV to read as follows:
    10                                  TITLE IV
    11    PREVENTION AND TREATMENT OF SICKLE CELL DISEASE DEMONSTRATION PROGRAM
    12  Section 3126. Prevention  and  treatment  of  sickle cell disease demon-
    13                  stration program.
    14    § 3126. Prevention and treatment of sickle cell disease  demonstration
    15  program.  1.  The  commissioner shall establish and conduct a prevention
    16  and treatment of sickle cell disease demonstration program in  the  city
    17  of  New  York  and  for  no  more than five additional counties, for the

    18  purpose of developing and establishing systemic  mechanisms  to  improve
    19  the prevention and treatment of sickle cell disease, including through:
    20    (a)  the  coordination of service delivery for individuals with sickle
    21  cell disease;
    22    (b) genetic counseling and testing;
    23    (c) bundling of technical  services  related  to  the  prevention  and
    24  treatment of sickle cell disease;
    25    (d) training of health professionals; and
    26    (e)  identifying  and establishing other efforts related to the expan-
    27  sion and coordination of education, treatment, and  continuity  of  care
    28  programs for individuals with sickle cell disease.
    29    2.  On  or  before  the  first  of January, two thousand eighteen, the

    30  commissioner shall report to the governor, the speaker of  the  assembly
    31  and  the  temporary  president  of  the  senate  on  the impact that the
    32  prevention and treatment of sickle cell  disease  demonstration  program
    33  has  had  on  individuals with sickle cell disease in regards to coordi-
    34  nation of service delivery, genetic counseling and testing, bundling  of
    35  technical  services  related  to  the prevention and treatment of sickle
    36  cell disease, training of health professionals  and  the  identification
    37  and  establishment of other efforts related to the expansion and coordi-
    38  nation of education, treatment, and continuity of care programs for such
    39  individuals.
    40    § 5. The sum of one million dollars ($1,000,000) is  hereby  appropri-

    41  ated to the department of health out of any moneys in the state treasury
    42  in  the  general  fund  to the credit of the state purposes account, not
    43  otherwise appropriated, and made immediately available, for the  purpose
    44  of carrying out the provisions of this act. Such moneys shall be payable
    45  on  the  audit  and  warrant of the comptroller on vouchers certified or
    46  approved by the commissioner of health in the manner prescribed by law.
    47    § 6. This act shall take effect immediately.
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