ASSEMBLY, No. 722

STATE OF NEW JERSEY

Introduced Pending Technical Review by Legislative Counsel

PRE-FILED FOR INTRODUCTION IN THE 1996 SESSION

By Assemblyman R. SMITH

An Act establishing a Lupus Erythematosus registry in the Department of Health and supplementing Title 26 of the Revised Statutes.

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

    1. The Legislature finds and declares that: there are approximately 20,000 to 30,000 people in New Jersey who suffer from Lupus Erythematosus, commonly known as "lupus"; lupus is a mysterious and complex disease causing certain women, particularly between the ages of 13 and 40, to suffer from an overactive immune system that can attack the vital organs or any other part of the body and which manifests itself in a variety of symptoms including severe exhaustion, body aches and facial rashes; the disease is frequently misdiagnosed usually because of the lack of knowledge about lupus on the part of medical professionals; a recent coordination of medical staff between the Robert Wood Johnson Medical School and the Robert Wood Johnson University Hospital to improve current knowledge about the disease and establish the Lupus Treatment and Research Center at that hospital has taken place; to further expand knowledge about, and to help in the treatment of lupus victims it is necessary to compile information about lupus on a Statewide basis; and, a lupus registry would provide a needed source of information to enable analysis of this problem and plan for and provide treatment services to lupus victims.

    2. a. A physician shall, after diagnosing that a person has Lupus Erythematosus, report this diagnosis to the Department of Health in a form and manner prescribed by the Commissioner of Health.

    b. The report shall be in writing and shall include the name and address of the person submitting the report, the name, age and address of the person diagnosed as having Lupus Erythematosus and other pertinent information as may be required by the Commissioner of Health.

    3. The Commissioner of Health shall establish and maintain a Lupus Erythematosus registry which shall contain a confidential record of all reported cases of Lupus Erythematosus and any other information that the commissioner deems relevant and appropriate in order to enable analysis of this problem and plan for, and provide treatment services to, Lupus Erythematosus victims.

    4. a. The reports made pursuant to this act are to be used only by the Department of Health and other agencies as may be designated by the Commissioner of Health and shall not otherwise be divulged or made public so as to disclose the identity of any person to whom they relate; and to that end, the reports shall not be included under materials available to public inspection pursuant to P.L.1963, c.73 (C.47:1A-1 et seq.).

    b. An individual or organization providing information to the Department of Health in accordance with this act shall not be deemed to be, or held liable for, divulging confidential information.

    c. Nothing in this act shall be construed to compel an individual to submit to medical or health examination or supervision by the Department of Health.

    5. The Commissioner of Health shall adopt rules and regulations pursuant to the "Administrative Procedure Act," P.L.1968, c.410 (C.52:14B-1 et seq.) to effectuate the purposes of this act.

    6. This act shall take effect immediately.

STATEMENT

    This bill would require physicians to report all cases of Lupus Erythematosus to the Department of Health in a form and manner prescribed by the Commissioner of Health. The report is to be in writing and shall include the name and address of the person submitting the report, the name, age and address of the person diagnosed as having Lupus Erythematosus and other pertinent information as may be required by the commissioner.

    The Department of Health is to establish and maintain a confidential Lupus Erythematosus registry which will contain a record of all reported cases of Lupus Erythematosus and any other information that the department deems relevant and appropriate in order to enable analysis of this problem and plan for, and provide treatment services to, Lupus Erythematosus victims.

    Additionally, the reports made pursuant to this act are to be used only by the Department of Health and other agencies as may be designated by the Commissioner of Health and shall not otherwise be divulged or made public so as to disclose the identity of any person to whom they relate; and to that end, the reports shall not be included under materials available to public inspection pursuant to P.L.1963, c.73 (C.47:1A-1 et seq.).

    Finally, no individual or organization providing information to the Department of Health in accordance with this act shall be deemed to be, or held liable for, divulging confidential information and nothing in this act shall be construed to compel an individual to submit to medical or health examination or supervision by the Department of Health.

Establishes a Lupus Erythematosus registry in the Department of Health.