S T A T E   O F   N E W   Y O R K
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                                  1837

                       2013-2014 Regular Sessions

                          I N  A S S E M B L Y

                               (PREFILED)

                             January 9, 2013
                               ___________

Introduced  by  M.  of  A. GIBSON, CRESPO, SCARBOROUGH, SCHIMEL, HOOPER,
  JAFFEE -- Multi-Sponsored by -- M. of A. DINOWITZ, PERRY,  PRETLOW  --
  read once and referred to the Committee on Health

AN ACT to amend the social services law, in relation to establishing the
  sickle cell treatment act of 2014

  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  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.
  (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 300  African-
Americans, 1 in 36,000 Hispanics, and 1 in 80,000 Caucasians.
  (4)  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 normal hemoglobin gene from one 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.
  (5) Children with SCD may exhibit frequent pain  episodes,  entrapment
of blood within the spleen, severe anemia, acute lung complications, and
priapism.  During  episodes of severe pain, spleen enlargement, or acute

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

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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  and  no
strokes.  Approximately  60 percent of students with silent strokes have
difficulty in school, require special education, or both.
  (7) 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.
  (8)  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.
  (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, requiring removal of sickle blood and replace-
ment with normal blood.
  (12) With acute lung complications, transfusions 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 two
new subdivisions 13 and 14 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

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  (C) OTHER TREATMENT AND SERVICES TO PREVENT INDIVIDUALS WHO HAVE SICK-
LE CELL DISEASE AND WHO HAVE HAD A STROKE FROM HAVING ANOTHER STROKE.
  14.  ANY  INCONSISTENT PROVISION OF THIS CHAPTER OR OTHER LAW NOTWITH-
STANDING, THE DEPARTMENT SHALL BE RESPONSIBLE FOR ARRANGING OR PROVIDING
FUNDING FOR THE PREVENTION AND TREATMENT OF SICKLE CELL  DISEASE  DEMON-
STRATION PROGRAM, AS DESCRIBED IN SECTION THREE HUNDRED SIXTY-THREE-F OF
THIS TITLE.
  S  4. The social services law is amended by adding a new section 363-f
to read as follows:
  S 363-F. PREVENTION AND TREATMENT OF SICKLE CELL DISEASE DEMONSTRATION
PROGRAM. 1. 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 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 OF TREAT-
MENT 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 OF HEALTH 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
COORDINATION OF SERVICE DELIVERY, GENETIC COUNSELING AND TESTING  BUNDL-
ING  OF  TECHNICAL  SERVICES  RELATED TO THE PREVENTION AND TREATMENT OF
SICKLE CELL DISEASE, TRAINING OF HEALTH PROFESSIONALS AND THE  IDENTIFI-
CATION  AND  ESTABLISHMENT OF OTHER EFFORTS RELATED TO THE EXPANSION AND
COORDINATION OF EDUCATION, TREATMENT, AND CONTINUITY  OF  CARE  PROGRAMS
FOR SUCH INDIVIDUALS.
  S 5. This act shall take effect immediately.