Establishes the sickle cell treatment act of 2014; appropriation

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 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 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.

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, 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.

Legislative history

New Bill

Fiscal implications

Appropriation of $1 million.

Effective date

This act shall take effect immediately.