S T A T E O F N E W Y O R K
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
(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
(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.
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
(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
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
(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
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
(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.