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(TRENTON) – Legislation sponsored by Assembly members Elease Evans, who has since retired from the Assembly, Mila M. Jasey and Cleopatra G. Tucker requiring insurers to cover treatment for sickle cell anemia, and improving the dissemination of information about this blood disorder to the general public has been signed into law.

“Sickle cell affects thousands of people in this country, most of whom are African-American and Latino-American of Caribbean ancestry. But many are not getting the care they need because sickle cell is considered a “pre-existing condition,” which means that coverage is limited by most major insurance companies until certain conditions are met,” said Evans, who represented Bergen and Passaic before retiring from the Assembly on January 10. “This is a life-threatening disease. With this law, people battling sickle cell now have the peace of mind that their health insurance will help cover the cost of their treatment.”

“Patients with sickle cell anemia have painful episodes, which can last from hours to days. These episodes, called crises, can be severe enough to require a hospital stay,” said Jasey (D-Essex). “There is no prevention or widely available cure, but there are treatments that can ease the symptoms and prevent complications. A person living with this disease should not have to consider giving up treatment because their health insurance will not cover it.”

“About two million Americans — one in 12 African-Americans — carry the sickle cell trait, which means that while they don’t have the disease, they carry a single gene for the disease and can pass this gene along to their children,” said Tucker (D-Essex). “Not only must we ensure that people afflicted by this disease have their treatments covered, but that the communities at greatest risk are aware of the genetic risk factors, symptoms and treatment of sickle cell anemia.”

The law (A-1120) requires hospital, medical and health service corporations, commercial individual, small employer and group health insurers, and health maintenance organizations to cover the cost of treatment for sickle cell anemia, when prescribed as medically necessary by the covered person’s physician.

The costs include but are not limited to those incurred for prescription drugs provided on an inpatient or outpatient basis, and the following treatments:

  • dose-intensive chemotherapy/bone marrow transplants and;
  • umbilical cord blood transplants when performed by institutions approved by the National Heart, Lung and Blood Institute or pursuant to protocols consistent with the guidelines of the National Heart, Lung and Blood Institute or any other nationally recognized professional medical specialty academy or organization.

The law requires the Department of Health and Senior Services (DHSS), in consultation with the Medical Society of New Jersey and the University of Medicine and Dentistry of New Jersey, to prepare an informational booklet in English and Spanish which provides, in a manner easily understandable by the patient, information about the genetic risk factors associated with, and the symptoms and treatment of, sickle cell anemia.

DHSS will have to make the booklets available to all licensed health care facilities engaged in the diagnosis or treatment of sickle cell anemia, health care professionals, community health centers, members of the public and social services agencies, upon their request; and post the information contained in the booklet on their website in English and Spanish.

The insurance coverage provisions of the law will take effect on the 90th day after enactment and apply to policies and contracts issued or renewed on, or after its effective day. The remaining provisions will take effect immediately.