BILL NO A08339A
SAME AS S03256-A
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
one million dollars.
NEW YORK STATE ASSEMBLY MEMORANDUM IN SUPPORT OF LEGISLATION submitted in accordance with Assembly Rule III, Sec 1(f)
BILL NUMBER: A8339A
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
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
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
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.
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.
Appropriation of $1 million.
LOCAL FISCAL IMPLICATIONS:
This act shall take effect immediately.
STATE OF NEW YORK
2015-2016 Regular Sessions
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
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
EXPLANATION--Matter in italics (underscored) is new; matter in brackets
 is old law to be omitted.
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
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
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.