Establishes the sickle cell treatment act of 2014; makes an appropriation of one million dollars.
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 2014; and making an appropriation therefor
To include primary and secondary preventative medical strategies, treatment, and services, including genetic counseling and testing, for individuals 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 2014.
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 365 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 establish 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, however. can get stuck in the blood stream and stop the oxygen being transported. 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 approximately 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 juveniles 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.
This act shall take effect immediately.
STATE OF NEW YORK ________________________________________________________________________ 6239 IN SENATE (PREFILED) January 8, 2014 ___________Introduced by Sen. SANDERS -- read twice and ordered printed, and when printed to be committed to the Committee on Finance 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: Section 1. This act shall be known and may be cited as the "sickle cell treatment act of 2014". S 2. Legislative findings. The legislature hereby finds and declares the following: (1) Sickle cell disease (SCD) is an inherited disease of red blood cells that is a major health problem in the United States. (2) Approximately 100,000 Americans have SCD and approximately 1,000 American babies are born with the disease each year. SCD also is a global problem with close to 500,000 babies born annually with the disease. (3) In the United States, SCD is most common in African-Americans and in those of Hispanic, Mediterranean, and Middle Eastern ancestry. Among newborn American infants, SCD occurs in approximately 1 in 500 African- Americans, 1 in 36,000 Hispanics, and 1 in 80,000 Caucasians. (4) More than 3,000,000 Americans, mostly African-Americans, have the sickle cell trait. These Americans are healthy carriers of the sickle cell gene who have inherited the normal hemoglobin gene from one parent and the sickle cell gene from the other parent. A sickle cell trait is not a disease, but when both parents have the sickle cell trait, there is a 1 in 4 chance with each pregnancy that the child will be born with SCD. (5) Children with SCD may exhibit frequent pain episodes, entrapment of blood within the spleen, severe anemia, acute lung complications (acute chest syndrome), and priapism. During episodes of severe pain, spleen enlargement, or acute lung complications, life threatening complications can develop rapidly. Children with SCD are also at riskEXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets [ ] is old law to be omitted. LBD10055-06-4 S. 6239 2
for septicemia, meningitis, and stroke. Children with SCD at highest risk for stroke can be identified and, thus, treated early with regular blood transfusions for stroke prevention. (6) The most feared complication for children with SCD is a stroke (either overt or silent) occurring in 30 percent of the children with sickle cell anemia prior to their 18th birthday and occurring in infants as young as 18 months of age. Students with SCD and silent strokes may not have any physical signs of such disease or strokes but may have a lower educational attainment when compared to children with SCD. (7) Many adults with SCD have acute problems, such as frequent pain episodes and acute lung complications (acute chest syndrome) that can result in death. Adults with SCD can also develop chronic problems, including pulmonary disease, pulmonary hypertension, degenerative chang- es in the shoulder and hip joints (bone necrosis), poor vision, and kidney failure. (8) The average life span for an adult with SCD is 45-50 years. While some patients can remain without symptoms for years, many others may not survive infancy or early childhood. Causes of death include bacterial infection, stroke, and lung, kidney, heart, or liver failure. Bacterial infections and lung injuries are leading causes of death in children and adults with SCD. (9) As a complex disorder with multisystem manifestations, SCD requires specialized comprehensive and continuous care to achieve the best possible outcome. Newborn screening, genetic counseling, and educa- tion of patients and family members are critical preventative measures that decrease morbidity and mortality, delaying or preventing compli- cations, in-patient hospital stays, and increased overall costs of care. (10) Stroke in the adult SCD population commonly results in both mental and physical disabilities for life. (11) Currently, one of the most effective treatments to prevent or treat an overt stroke or a silent stroke for a child with SCD is at least monthly blood transfusions throughout childhood for many, and throughout life for some. This requires the removal of sickle cell blood and replacement with normal blood (exchange transfusion). (12) With acute lung complications (acute chest syndrome), trans- fusions are usually required and are often the only therapy demonstrated to prevent premature death. The legislature declares its intent to develop and establish systemic mechanisms to improve the prevention and treatment of sickle cell disease. S 3. Section 365 of the social services law is amended by adding a new subdivision 13 to read as follows: 13. ANY INCONSISTENT PROVISION OF THIS CHAPTER OR OTHER LAW NOTWITH- STANDING, THE DEPARTMENT SHALL BE RESPONSIBLE FOR FURNISHING MEDICAL ASSISTANCE FOR PREVENTATIVE MEDICAL STRATEGIES, INCLUDING PROPHYLAXIS, AND TREATMENT AND SERVICES FOR ELIGIBLE INDIVIDUALS WHO HAVE SICKLE CELL DISEASE. FOR THE PURPOSES OF THIS SUBDIVISION, "PREVENTATIVE MEDICAL STRATEGIES, TREATMENT AND SERVICES" SHALL INCLUDE, BUT NOT BE LIMITED TO THE FOLLOWING: (A) CHRONIC BLOOD TRANSFUSION (WITH DEFEROXAMINE CHELATION) TO PREVENT STROKE IN INDIVIDUALS WITH SICKLE CELL DISEASE WHO HAVE BEEN IDENTIFIED AS BEING AT HIGH RISK FOR STROKE; (B) GENETIC COUNSELING AND TESTING FOR INDIVIDUALS WITH SICKLE CELL DISEASE OR THE SICKLE CELL TRAIT; OR (C) OTHER TREATMENT AND SERVICES TO PREVENT INDIVIDUALS WHO HAVE SICK- LE CELL DISEASE AND WHO HAVE HAD A STROKE FROM HAVING ANOTHER STROKE.S. 6239 3
S 4. Article 31 of the public health law is amended by adding a new title IV to read as follows: TITLE IV PREVENTION AND TREATMENT OF SICKLE CELL DISEASE DEMONSTRATION PROGRAM SECTION 3126. PREVENTION AND TREATMENT OF SICKLE CELL DISEASE DEMON- STRATION PROGRAM. S 3126. PREVENTION AND TREATMENT OF SICKLE CELL DISEASE DEMONSTRATION PROGRAM. 1. THE COMMISSIONER SHALL ESTABLISH AND CONDUCT A PREVENTION AND TREATMENT OF SICKLE CELL DISEASE DEMONSTRATION PROGRAM IN THE CITY OF NEW YORK AND FOR NO MORE THAN FIVE COUNTIES, FOR THE PURPOSE OF DEVELOPING AND ESTABLISHING SYSTEMIC MECHANISMS TO IMPROVE THE PREVENTION AND TREATMENT OF SICKLE CELL DISEASE, INCLUDING THROUGH: (A) THE COORDINATION OF SERVICE DELIVERY FOR INDIVIDUALS WITH SICKLE CELL DISEASE; (B) GENETIC COUNSELING AND TESTING; (C) BUNDLING OF TECHNICAL SERVICES RELATED TO THE PREVENTION AND TREATMENT OF SICKLE CELL DISEASE; (D) TRAINING OF HEALTH PROFESSIONALS; AND (E) IDENTIFYING AND ESTABLISHING OTHER EFFORTS RELATED TO THE EXPAN- SION AND COORDINATION OF EDUCATION, TREATMENT, AND CONTINUITY OF CARE PROGRAMS FOR INDIVIDUALS WITH SICKLE CELL DISEASE. 2. ON OR BEFORE THE FIRST OF JANUARY, TWO THOUSAND SEVENTEEN, THE COMMISSIONER SHALL REPORT TO THE GOVERNOR, THE SPEAKER OF THE ASSEMBLY AND THE TEMPORARY PRESIDENT OF THE SENATE ON THE IMPACT THAT THE PREVENTION AND TREATMENT OF SICKLE CELL DISEASE DEMONSTRATION PROGRAM HAS HAD ON INDIVIDUALS WITH SICKLE CELL DISEASE IN REGARDS TO COORDI- NATION OF SERVICE DELIVERY, GENETIC COUNSELING AND TESTING, BUNDLING OF TECHNICAL SERVICES RELATED TO THE PREVENTION AND TREATMENT OF SICKLE CELL DISEASE, TRAINING OF HEALTH PROFESSIONALS AND THE IDENTIFICATION AND ESTABLISHMENT OF OTHER EFFORTS RELATED TO THE EXPANSION AND COORDI- NATION OF EDUCATION, TREATMENT, AND CONTINUITY OF CARE PROGRAMS FOR SUCH INDIVIDUALS. S 5. The sum of one million dollars ($1,000,000) is hereby appropri- ated to the department of health out of any moneys in the state treasury in the general fund to the credit of the state purposes account, not otherwise appropriated, and made immediately available, for the purpose of carrying out the provisions of this act. Such moneys shall be payable on the audit and warrant of the comptroller on vouchers certified or approved by the commissioner of health in the manner prescribed by law. S 6. This act shall take effect immediately.