Bill Text: NY A08913 | 2013-2014 | General Assembly | Introduced
Bill Title: Establishes the sickle cell treatment act of 2014.
Spectrum: Partisan Bill (Democrat 16-0)
Status: (Introduced - Dead) 2014-02-28 - referred to health [A08913 Detail]
Download: New_York-2013-A08913-Introduced.html
S T A T E O F N E W Y O R K ________________________________________________________________________ 8913 I N A S S E M B L Y February 28, 2014 ___________ Introduced by M. of A. SCARBOROUGH, CRESPO, SCHIMEL, HOOPER, JAFFEE -- Multi-Sponsored by -- M. of A. DINOWITZ, PERRY, PRETLOW -- read once and referred to the Committee on Health AN ACT to amend the social services law, in relation to establishing the sickle cell treatment act of 2014 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 70,000 Americans have SCD and approximately 1,800 8 American babies are born with the disease each year. SCD also is a 9 global problem with close to 300,000 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 300 African- 14 Americans, 1 in 36,000 Hispanics, and 1 in 80,000 Caucasians. 15 (4) More than 2,500,000 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 gene from the other parent. A sickle cell trait is not a 19 disease, but when both parents have the sickle cell trait, there is a 1 20 in 4 chance with each pregnancy that the child will be born with SCD. 21 (5) Children with SCD may exhibit frequent pain episodes, entrapment 22 of blood within the spleen, severe anemia, acute lung complications, and 23 priapism. During episodes of severe pain, spleen enlargement, or acute 24 lung complications, life threatening complications can develop rapidly. 25 Children with SCD are also at risk for septicemia, meningitis, and 26 stroke. Children with SCD at highest risk for stroke can be identified EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets [ ] is old law to be omitted. LBD02042-01-3 A. 8913 2 1 and, thus, treated early with regular blood transfusions for stroke 2 prevention. 3 (6) The most feared complication for children with SCD is a stroke 4 (either overt or silent) occurring in 30 percent of the children with 5 sickle cell anemia prior to their 18th birthday and occurring in infants 6 as young as 18 months of age. Students with SCD and silent strokes may 7 not have any physical signs of such disease or strokes but may have a 8 lower educational attainment when compared to children with SCD and no 9 strokes. Approximately 60 percent of students with silent strokes have 10 difficulty in school, require special education, or both. 11 (7) Many adults with SCD have acute problems, such as frequent pain 12 episodes and acute lung complications that can result in death. Adults 13 with SCD can also develop chronic problems, including pulmonary disease, 14 pulmonary hypertension, degenerative changes in the shoulder and hip 15 joints, poor vision, and kidney failure. 16 (8) The average life span for an adult with SCD is the mid-40s. While 17 some patients can remain without symptoms for years, many others may not 18 survive infancy or early childhood. Causes of death include bacterial 19 infection, stroke, and lung, kidney, heart, or liver failure. Bacterial 20 infections and lung injuries are leading causes of death in children and 21 adults with SCD. 22 (9) As a complex disorder with multisystem manifestations, SCD 23 requires specialized comprehensive and continuous care to achieve the 24 best possible outcome. Newborn screening, genetic counseling, and educa- 25 tion of patients and family members are critical preventative measures 26 that decrease morbidity and mortality, delaying or preventing compli- 27 cations, in-patient hospital stays, and increased overall costs of care. 28 (10) Stroke in the adult SCD population commonly results in both 29 mental and physical disabilities for life. 30 (11) Currently, one of the most effective treatments to prevent or 31 treat an overt stroke or a silent stroke for a child with SCD is at 32 least monthly blood transfusions throughout childhood for many, and 33 throughout life for some, requiring removal of sickle blood and replace- 34 ment with normal blood. 35 (12) With acute lung complications, transfusions are usually required 36 and are often the only therapy demonstrated to prevent premature death. 37 The legislature declares its intent to develop and establish systemic 38 mechanisms to improve the prevention and treatment of sickle cell 39 disease. 40 S 3. Section 365 of the social services law is amended by adding two 41 new subdivisions 13 and 14 to read as follows: 42 13. ANY INCONSISTENT PROVISION OF THIS CHAPTER OR OTHER LAW NOTWITH- 43 STANDING, THE DEPARTMENT SHALL BE RESPONSIBLE FOR FURNISHING MEDICAL 44 ASSISTANCE FOR PREVENTATIVE MEDICAL STRATEGIES, INCLUDING PROPHYLAXIS, 45 AND TREATMENT AND SERVICES FOR ELIGIBLE INDIVIDUALS WHO HAVE SICKLE CELL 46 DISEASE. FOR THE PURPOSES OF THIS SUBDIVISION, "PREVENTATIVE MEDICAL 47 STRATEGIES, TREATMENT AND SERVICES" SHALL INCLUDE, BUT NOT BE LIMITED TO 48 THE FOLLOWING: 49 (A) CHRONIC BLOOD TRANSFUSION (WITH DEFEROXAMINE CHELATION) TO PREVENT 50 STROKE IN INDIVIDUALS WITH SICKLE CELL DISEASE WHO HAVE BEEN IDENTIFIED 51 AS BEING AT HIGH RISK FOR STROKE; 52 (B) GENETIC COUNSELING AND TESTING FOR INDIVIDUALS WITH SICKLE CELL 53 DISEASE OR THE SICKLE CELL TRAIT; OR 54 (C) OTHER TREATMENT AND SERVICES TO PREVENT INDIVIDUALS WHO HAVE SICK- 55 LE CELL DISEASE AND WHO HAVE HAD A STROKE FROM HAVING ANOTHER STROKE. A. 8913 3 1 14. ANY INCONSISTENT PROVISION OF THIS CHAPTER OR OTHER LAW NOTWITH- 2 STANDING, THE DEPARTMENT SHALL BE RESPONSIBLE FOR ARRANGING OR PROVIDING 3 FUNDING FOR THE PREVENTION AND TREATMENT OF SICKLE CELL DISEASE DEMON- 4 STRATION PROGRAM, AS DESCRIBED IN SECTION THREE HUNDRED SIXTY-THREE-F OF 5 THIS TITLE. 6 S 4. The social services law is amended by adding a new section 363-f 7 to read as follows: 8 S 363-F. PREVENTION AND TREATMENT OF SICKLE CELL DISEASE DEMONSTRATION 9 PROGRAM. 1. THE COMMISSIONER OF HEALTH SHALL ESTABLISH AND CONDUCT A 10 PREVENTION AND TREATMENT OF SICKLE CELL DISEASE DEMONSTRATION PROGRAM IN 11 THE CITY OF NEW YORK AND FOR NO MORE THAN FIVE COUNTIES, FOR THE PURPOSE 12 OF DEVELOPING AND ESTABLISHING SYSTEMIC MECHANISMS TO IMPROVE THE 13 PREVENTION AND TREATMENT OF SICKLE CELL DISEASE, INCLUDING THROUGH: 14 (A) THE COORDINATION OF SERVICE DELIVERY FOR INDIVIDUALS WITH SICKLE 15 CELL DISEASE; 16 (B) GENETIC COUNSELING AND TESTING; 17 (C) BUNDLING OF TECHNICAL SERVICES RELATED TO THE PREVENTION OF TREAT- 18 MENT OF SICKLE CELL DISEASE; 19 (D) TRAINING OF HEALTH PROFESSIONALS; AND 20 (E) IDENTIFYING AND ESTABLISHING OTHER EFFORTS RELATED TO THE EXPAN- 21 SION AND COORDINATION OF EDUCATION, TREATMENT, AND CONTINUITY OF CARE 22 PROGRAMS FOR INDIVIDUALS WITH SICKLE CELL DISEASE. 23 2. ON OR BEFORE THE FIRST OF JANUARY, TWO THOUSAND EIGHTEEN, THE 24 COMMISSIONER OF HEALTH SHALL REPORT TO THE GOVERNOR, THE SPEAKER OF THE 25 ASSEMBLY AND THE TEMPORARY PRESIDENT OF THE SENATE ON THE IMPACT THAT 26 THE PREVENTION AND TREATMENT OF SICKLE CELL DISEASE DEMONSTRATION 27 PROGRAM HAS HAD ON INDIVIDUALS WITH SICKLE CELL DISEASE IN REGARDS TO 28 COORDINATION OF SERVICE DELIVERY, GENETIC COUNSELING AND TESTING BUNDL- 29 ING OF TECHNICAL SERVICES RELATED TO THE PREVENTION AND TREATMENT OF 30 SICKLE CELL DISEASE, TRAINING OF HEALTH PROFESSIONALS AND THE IDENTIFI- 31 CATION AND ESTABLISHMENT OF OTHER EFFORTS RELATED TO THE EXPANSION AND 32 COORDINATION OF EDUCATION, TREATMENT, AND CONTINUITY OF CARE PROGRAMS 33 FOR SUCH INDIVIDUALS. 34 S 5. This act shall take effect immediately.