Establishes the sickle cell treatment act of 2012

Summary of provisions

Section 365 of social services law amended by adding two new subdivisions 13 and 14 Sub-section 3, subdivision 13: The health Department shall be responsible for furnishing medical assistance for preventative medical strategies. Preventative medical strategies and medical services include chronic blood transfusion to prevent stroke in those with a high risk for it, genetic counseling, and other treatments.

Sub-section 4: The Commissioner of Health shall establish and conduct prevention and treatment of sickle cell disease demonstration program in the City of New York and no more than five counties.

On or before the first of January, two thousand fifteen the Commissioner of Health shall report to the governor, speaker of the assembly and temporary the Senate about the expansion and coordination of sickle cell disease programs, service delivery, training of health professionals and continuity of care programs.

Justification

Sickle Cell Disease (in this section referred to as 'SCD') is an inherited disease of red blood cells that is a major health problem in the United States.

Approximately 70,000 Americans have SCD and approximately 1,800 American babies are born with the disease each year. SCD also is a global problem with close to 300,000 babies born annually with the disease.

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 300 African-Americans, 1 in 36,000 Hispanics, and 1 in 80,000 Caucasians. More than 2,500,000 Americans, mostly African-Americans, have the sickle cell trait. These Americans are healthy carriers of the sickle cell gene who have inherited the n0D11al hemoglobin gene from 1 parent and the sickle 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.

Children with SED may exhibit frequent pain episodes, entrapment of blood within the spleen, severe anemia, acute lung complications, and pliapism. During episodes of severe pain, spleen enlargement, or acute lung complications, life threatening complications can develop rapidly. Children with SCD are also at risk 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.

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 and no strokes. Approximately 60 percent of students with silent strokes have difficulty in school, require special education, or both.

Many adults with SCD have acute problems, such as frequent pain episodes and acute lung complications that can result in death. Adults with SCD can also develop chronic problems, including pulmonary disease, pulmonary hypertension, degenerative changes in the shoulder and hip joints, poor vision, and kidney failure.

The average life span for an adult with SCD is the mid-40s. 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.

It has been long overdue for significant treatment for Sickle Cell Disease to be available to New York State residents. This legislation will seek to remedy this problem by having the Health Commissioner develop programs and treatment options for children and adults. It will try to alleviate some of the health disparities minorities especially African-Americans face.

Legislative history

New Bill.

Fiscal implications

Cost to the state is yet to be determined.

Effective date

This act shall take effect immediately.