ASSEMBLY, No. 110

STATE OF NEW JERSEY

PRE-FILED FOR INTRODUCTION IN THE 1996 SESSION

By Assemblyman JONES and Assemblywoman GILL

An Act concerning the early detection and treatment of sickle cell anemia and other hemoglobinopathies and making an appropriation therefor.

    Be It Enacted by the Senate and General Assembly of the State of New Jersey:

    1. It is hereby declared to be the public policy of this State that in the interests of public health every effort should be made to detect in newborn infants, sickle cell anemia and other hemoglobinopathies and to treat affected individuals.

    2. All infants born in this State shall be tested for sickle cell anemia and other hemoglobinopathies. The Commissioner of Health and Senior Services shall issue regulations to assure that newborns are so tested in a manner approved by the commissioner. The commissioner shall ensure that treatment services are available to all identified individuals. The Department of Health and Senior Services may charge a reasonable fee for the tests performed pursuant to this act. The amount of the fee and the procedures for collecting the fee shall be determined by the commissioner. The commissioner shall apply all revenues collected from the fees to the testing and treatment procedures performed pursuant to this act.

    The commissioner may also require testing of newborn infants for other genetic disorders if reliable and efficient testing techniques are available. If the commissioner determines that an additional test shall be required, 90 days prior to requiring the test he shall advise the President of the Senate, Speaker of the General Assembly and chairmen of the standing reference committees on appropriations and health of his determination.

    The commissioner shall provide a program of reviewing and following up on positive cases in order that measures may be taken to treat these disorders.

    Information on newborn infants and their families compiled pursuant to this section may be used by the department and agencies designated by the commissioner for the purposes of carrying out this act, but otherwise the information shall be confidential and not divulged or made public so as to disclose the identity of any person to which it relates, except as provided by law. The department shall conduct an intensive educational and training program among physicians, hospitals, public health nurses and the public concerning sickle cell anemia and other hemoglobinopathies. This program shall include information concerning the nature of the disorders, testing for the detection of these disorders and treatment modalities for these disorders.

    The provisions of this section shall not apply if the parents of a newborn infant object to the testing on the grounds that it would conflict with their religious tenets or practices.

    3. There is appropriated $375,000 from the General Fund to the Department of Health and Senior Services to effectuate the purposes of this act.

    4. This act shall take effect immediately.

Provides for the detection and treatment of sickle cell anemia in newborn children, appropriates $375,000.