STATE OF NEW YORK
________________________________________________________________________
5398
2015-2016 Regular Sessions
IN ASSEMBLY
February 20, 2015
___________
Introduced by M. of A. SCARBOROUGH, CRESPO, SCHIMEL, HOOPER, JAFFEE,
CLARK, COOK, PEOPLES-STOKES -- Multi-Sponsored by -- M. of A. DINOW-
ITZ, MARKEY, MOSLEY, PERRY, PRETLOW, RIVERA, TITONE -- read once and
referred to the Committee on Health
AN ACT to amend the social services law and the public health law, in
relation to establishing the sickle cell treatment act of 2015; 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 2015".
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.
LBD04153-01-5
A. 5398 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. 5398 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 seventeen, 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.
