Bill Text: NY S06239 | 2013-2014 | General Assembly | Amended
Bill Title: Establishes the sickle cell treatment act of 2014; makes an appropriation of one million dollars.
Spectrum: Partisan Bill (Democrat 2-0)
Status: (Introduced - Dead) 2014-08-11 - PRINT NUMBER 6239A [S06239 Detail]
Download: New_York-2013-S06239-Amended.html
S T A T E O F N E W Y O R K
________________________________________________________________________
6239--A
I N S E N A T E
(PREFILED)
January 8, 2014
___________
Introduced by Sen. SANDERS -- read twice and ordered printed, and when
printed to be committed to the Committee on Finance -- 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 2014; 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 2014".
3 S 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.
22 (5) Children with SCD may exhibit frequent pain episodes, entrapment
23 of blood within the spleen, severe anemia, acute lung complications
24 (acute chest syndrome), and priapism. During episodes of severe pain,
EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
[ ] is old law to be omitted.
LBD10055-07-4
S. 6239--A 2
1 spleen enlargement, or acute lung complications, life threatening
2 complications can develop rapidly. Children with SCD are also at risk
3 for septicemia, meningitis, and stroke. Children with SCD at highest
4 risk for stroke can be identified and, thus, treated early with regular
5 blood transfusions for stroke prevention.
6 (6) The most feared complication for children with SCD is a stroke
7 (either overt or silent) occurring in 30 percent of the children with
8 sickle cell anemia prior to their 18th birthday and occurring in infants
9 as young as 18 months of age. Students with SCD and silent strokes may
10 not have any physical signs of such disease or strokes but may have a
11 lower educational attainment when compared to children with SCD.
12 (7) Many adults with SCD have acute problems, such as frequent pain
13 episodes and acute lung complications (acute chest syndrome) that can
14 result in death. Adults with SCD can also develop chronic problems,
15 including pulmonary disease, pulmonary hypertension, degenerative chang-
16 es in the shoulder and hip joints (bone necrosis), poor vision, and
17 kidney failure.
18 (8) The average life span for an adult with SCD is 45-50 years. While
19 some patients can remain without symptoms for years, many others may not
20 survive infancy or early childhood. Causes of death include bacterial
21 infection, stroke, and lung, kidney, heart, or liver failure. Bacterial
22 infections and lung injuries are leading causes of death in children and
23 adults with SCD.
24 (9) As a complex disorder with multisystem manifestations, SCD
25 requires specialized comprehensive and continuous care to achieve the
26 best possible outcome. Newborn screening, genetic counseling, and educa-
27 tion of patients and family members are critical preventative measures
28 that decrease morbidity and mortality, delays or prevents complications,
29 reduces in-patient hospital stays, and decreases overall costs of care.
30 (10) Stroke in the adult SCD population commonly results in both
31 mental and physical disabilities for life.
32 (11) Currently, one of the most effective treatments to prevent or
33 treat an overt stroke or a silent stroke for a child with SCD is at
34 least monthly blood transfusions throughout childhood for many, and
35 throughout life for some. This requires the removal of sickle cell blood
36 and replacement with normal blood (exchange transfusion).
37 (12) With acute lung complications (acute chest syndrome), trans-
38 fusions are usually required and are often the only therapy demonstrated
39 to prevent premature death.
40 The legislature declares its intent to develop and establish systemic
41 mechanisms to improve the prevention and treatment of sickle cell
42 disease.
43 S 3. Section 365 of the social services law is amended by adding a new
44 subdivision 13 to read as follows:
45 13. ANY INCONSISTENT PROVISION OF THIS CHAPTER OR OTHER LAW NOTWITH-
46 STANDING, THE DEPARTMENT SHALL BE RESPONSIBLE FOR FURNISHING MEDICAL
47 ASSISTANCE FOR PREVENTATIVE MEDICAL STRATEGIES, INCLUDING PROPHYLAXIS,
48 AND TREATMENT AND SERVICES FOR ELIGIBLE INDIVIDUALS WHO HAVE SICKLE CELL
49 DISEASE. FOR THE PURPOSES OF THIS SUBDIVISION, "PREVENTATIVE MEDICAL
50 STRATEGIES, TREATMENT AND SERVICES" SHALL INCLUDE, BUT NOT BE LIMITED TO
51 THE FOLLOWING:
52 (A) CHRONIC BLOOD TRANSFUSION (WITH DEFEROXAMINE CHELATION) TO PREVENT
53 STROKE IN INDIVIDUALS WITH SICKLE CELL DISEASE WHO HAVE BEEN IDENTIFIED
54 AS BEING AT HIGH RISK FOR STROKE;
55 (B) GENETIC COUNSELING AND TESTING FOR INDIVIDUALS WITH SICKLE CELL
56 DISEASE OR THE SICKLE CELL TRAIT; OR
S. 6239--A 3
1 (C) OTHER TREATMENT AND SERVICES TO PREVENT INDIVIDUALS WHO HAVE SICK-
2 LE CELL DISEASE AND WHO HAVE HAD A STROKE FROM HAVING ANOTHER STROKE.
3 S 4. Article 31 of the public health law is amended by adding a new
4 title IV to read as follows:
5 TITLE IV
6 PREVENTION AND TREATMENT OF SICKLE CELL DISEASE DEMONSTRATION PROGRAM
7 SECTION 3126. PREVENTION AND TREATMENT OF SICKLE CELL DISEASE DEMON-
8 STRATION PROGRAM.
9 S 3126. PREVENTION AND TREATMENT OF SICKLE CELL DISEASE DEMONSTRATION
10 PROGRAM. 1. THE COMMISSIONER SHALL ESTABLISH AND CONDUCT A PREVENTION
11 AND TREATMENT OF SICKLE CELL DISEASE DEMONSTRATION PROGRAM IN THE CITY
12 OF NEW YORK AND FOR NO MORE THAN FIVE ADDITIONAL COUNTIES, FOR THE
13 PURPOSE OF DEVELOPING AND ESTABLISHING SYSTEMIC MECHANISMS TO IMPROVE
14 THE PREVENTION AND TREATMENT OF SICKLE CELL DISEASE, INCLUDING THROUGH:
15 (A) THE COORDINATION OF SERVICE DELIVERY FOR INDIVIDUALS WITH SICKLE
16 CELL DISEASE;
17 (B) GENETIC COUNSELING AND TESTING;
18 (C) BUNDLING OF TECHNICAL SERVICES RELATED TO THE PREVENTION AND
19 TREATMENT OF SICKLE CELL DISEASE;
20 (D) TRAINING OF HEALTH PROFESSIONALS; AND
21 (E) IDENTIFYING AND ESTABLISHING OTHER EFFORTS RELATED TO THE EXPAN-
22 SION AND COORDINATION OF EDUCATION, TREATMENT, AND CONTINUITY OF CARE
23 PROGRAMS FOR INDIVIDUALS WITH SICKLE CELL DISEASE.
24 2. ON OR BEFORE THE FIRST OF JANUARY, TWO THOUSAND SEVENTEEN, THE
25 COMMISSIONER SHALL REPORT TO THE GOVERNOR, THE SPEAKER OF THE ASSEMBLY
26 AND THE TEMPORARY PRESIDENT OF THE SENATE ON THE IMPACT THAT THE
27 PREVENTION AND TREATMENT OF SICKLE CELL DISEASE DEMONSTRATION PROGRAM
28 HAS HAD ON INDIVIDUALS WITH SICKLE CELL DISEASE IN REGARDS TO COORDI-
29 NATION OF SERVICE DELIVERY, GENETIC COUNSELING AND TESTING, BUNDLING OF
30 TECHNICAL SERVICES RELATED TO THE PREVENTION AND TREATMENT OF SICKLE
31 CELL DISEASE, TRAINING OF HEALTH PROFESSIONALS AND THE IDENTIFICATION
32 AND ESTABLISHMENT OF OTHER EFFORTS RELATED TO THE EXPANSION AND COORDI-
33 NATION OF EDUCATION, TREATMENT, AND CONTINUITY OF CARE PROGRAMS FOR SUCH
34 INDIVIDUALS.
35 S 5. The sum of one million dollars ($1,000,000) is hereby appropri-
36 ated to the department of health out of any moneys in the state treasury
37 in the general fund to the credit of the state purposes account, not
38 otherwise appropriated, and made immediately available, for the purpose
39 of carrying out the provisions of this act. Such moneys shall be payable
40 on the audit and warrant of the comptroller on vouchers certified or
41 approved by the commissioner of health in the manner prescribed by law.
42 S 6. This act shall take effect immediately.
