Senate Bill S5450

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

                                 5450--A

                       2011-2012 Regular Sessions

                            I N  S E N A T E

                              May 24, 2011
                               ___________

Introduced  by  Sen. HUNTLEY -- read twice and ordered printed, and when
  printed to be committed to the Committee on Social Services --  recom-
  mitted  to  the Committee on Social Services 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, in relation to establishing the
  sickle cell treatment act of 2012

  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 2012".
  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

 EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
                      [ ] is old law to be omitted.
                                                           LBD11759-02-1
              

S. 5450--A                          2

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 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;

S. 5450--A                          3

  (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.
  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 SIXTEEN, 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 OF 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.