|SAME AS||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 of one million dollars.|
|08/05/2015||referred to health|
|01/06/2016||referred to health|
|01/20/2016||amend (t) and recommit to health|
|01/20/2016||print number 8339a|
|03/03/2016||enacting clause stricken|
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NEW YORK STATE ASSEMBLY
MEMORANDUM IN SUPPORT OF LEGISLATION
submitted in accordance with Assembly Rule III, Sec 1(f)
BILL NUMBER: A8339A SPONSOR: Clark
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   PURPOSE: 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 2016. 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 cell disease. 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.   JUSTIFICATION: 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.   FISCAL IMPLICATIONS: Appropriation of $1 million.   LOCAL FISCAL IMPLICATIONS: None   EFFECTIVE DATE: This act shall take effect immediately.
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STATE OF NEW YORK ________________________________________________________________________ 8339--A 2015-2016 Regular Sessions IN ASSEMBLY 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 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. LBD04153-03-6A. 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 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. 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 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.