New Jersey-2014-S1173-Introduced

An Act concerning Parkinson's disease and supplementing Title 26 of the Revised Statutes.

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

1. This act shall be known and may be cited as the "Parkinson's Disease Public Awareness and Education Act."

2. The Legislature finds and declares that:

a. Parkinson's disease is a debilitating, painful, and incurable neurological disorder of unknown origin that disrupts and can end the lives of those who suffer from it;

b. Parkinson's disease causes diverse symptoms, including rigidity, slowness of movement, poor balance, and tremors, which lead to an impaired ability to walk, speak, swallow, and even breathe, so that the end result can be a clear mind trapped inside a body that has lost its ability to function;

c. The visible symptoms of Parkinson's disease are often mistaken to be a normal part of the aging process;

d. In addition, many people with the disease encounter precarious legal and personal situations in which they are erroneously thought to be under the influence of illegal or prescription drugs or alcohol due to their movement and gait patterns;

e. Parkinson's disease takes an enormous emotional, psychological, and physical toll on caregivers and families, potentially overwhelming their lives;

f. It has been estimated that 1.5 million Americans have been diagnosed with Parkinson's disease, 50,000 more are diagnosed nationally each year, and another 1.5 million persons have the disease but have never seen a neurologist;

g. Parkinson's disease costs Americans $25 billion per year, including medical treatments, disability payments, and lost productivity;

h. Medications can only control some of the symptoms of the disease and only for uncertain periods of time;

i. New Jersey, with the largest concentration of pharmaceutical companies of any state in the nation and its top academic research facilities, is a center for Parkinson's disease research and treatment;

j. The "Morris K. Udall Parkinson's Disease Research Act of 1997," Pub.L.105-78, provides federal funding through the National Institutes of Health for Parkinson's disease, and April 11 has been proclaimed to be World Parkinson's Day in order to recognize the need for more research and help in dealing with the devastating
effects of this disease;

k. This State, through the enactment of Joint Resolution No. 17 on January 7, 2000, has designated April in each year as "Parkinson's Disease Awareness Month" in New Jersey, and directs the Governor to annually issue a proclamation calling upon the public officials and citizens of the State to observe this month with appropriate activities and programs;

l. Increased public awareness and education are needed among health care, social services, judicial, law enforcement, and emergency medical services personnel in order to better respond to the needs of Parkinson's disease patients and their caregivers and families; and

m. It is imperative for New Jersey to commit itself to actively support such public awareness and education efforts throughout the State in order to better meet the needs of its citizens who are suffering from Parkinson's disease.

3. As used in this act:

"Commissioner" means the Commissioner of Health.

"Department" means the Department of Health.

"Program" means the Parkinson's disease public awareness and education program established pursuant to this act.

4. The Commissioner of Health shall establish a Parkinson's disease public awareness and education program.

a. The purpose of the program shall be to promote public awareness of Parkinson's disease and the value of early detection and possible treatments, including the benefits and risks of those treatments. The Department of Health and Senior Services may accept, for that purpose, any special grant of monies, services, or property from the federal government or any of its agencies, or from any foundation, organization, or medical school.

b. The program shall include the following:

(1) Development of a public education and outreach campaign to promote Parkinson's disease awareness and education, including, but not limited to, the following subjects:

(a) the cause and nature of the disease;

(b) diagnostic procedures and appropriate indications for their use;

(c) lifestyle issues relating to how a person copes with Parkinson's disease, including, but not limited to, nutrition, diet, and physical exercise;

(d) environmental safety and injury prevention; and

(e) availability of Parkinson's disease diagnostic and treatment services in the community;

(2) Development of educational materials to be made available to consumers through local boards of health, physicians, hospitals, and clinics;

(3) Development of professional education programs for health care providers to assist them in understanding research findings and the subjects set forth in paragraph (1) of this subsection;

(4) Development of educational programs for other personnel, including judicial staff, police officers, fire fighters, and social services and emergency medical service providers, to assist them in recognizing the symptoms of Parkinson's disease and understanding how to respond to the needs of persons with the disease in the course of performing their duties, including dissemination of the informational booklet prepared pursuant to section 5 of this act; and

(5) Development and maintenance of a list of current providers of specialized services for the diagnosis and treatment of Parkinson's disease. Dissemination of the list shall be accompanied by a description of diagnostic procedures, appropriate indications for their use, and a cautionary statement about the current status of Parkinson's disease research and treatment. The statement shall also indicate that the department does not endorse specific Parkinson's disease programs or centers in this State.

5. a. The department, in consultation with the New Jersey Chapter of the American Parkinson Disease Association and the Movement Disorders Center at the Robert Wood Johnson University Medical Group, UMDNJ Robert Wood Johnson Medical School, shall prepare an informational booklet in English and Spanish which provides, in a manner easily understandable by a patient or other non-health care professional, information about the symptoms and treatment of Parkinson's disease. The booklet may contain any other information that the commissioner deems necessary and may be revised by the department whenever new information about Parkinson's disease becomes available.

b. The department shall make a supply of the booklets available to all licensed health care facilities engaged in the diagnosis or treatment of Parkinson's disease and to those personnel described in paragraph (4) of subsection b. of section 4 of this act, as well as to health care professionals, community health centers, and members of the public upon their request. The department shall publicize and make available the booklet to the maximum extent possible, and shall make available electronically on its Internet website in English and Spanish the information contained in the booklet.

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

7. This act shall take effect on the 180th day following enactment, except that the Commissioner of Health may take such anticipatory administrative action in advance as shall be necessary for the implementation of the act.

STATEMENT

This bill, which is designated the "Parkinson's Disease Public Awareness and Education Act," establishes a Parkinson's disease public awareness and education program in the Department of Health (DOH).

The program is to include the development of a public education and outreach campaign to promote Parkinson's disease awareness and education, including, but not limited to: (1) the cause and nature of the disease; (2) diagnostic procedures and appropriate indications for their use; (3) lifestyle issues relating to how a person copes with Parkinson's disease; (4) environmental safety and injury prevention; and (5) availability of Parkinson's disease diagnostic and treatment services in the community.

The program is also to include development of educational materials to be made available to consumers through local boards of health, physicians, hospitals, and clinics; professional education programs for health care providers to assist them in understanding research findings and the subjects set forth in the bill; and educational programs for other personnel, including judicial staff, police officers, fire fighters, and social services and emergency medical service providers, to assist them in recognizing the symptoms of Parkinson's disease and understanding how to respond to the needs of persons with the disease in the course of performing their duties, including dissemination of the informational booklet prepared pursuant to the bill.

The program is also to include development and maintenance of a list of current providers of specialized services for the diagnosis and treatment of Parkinson's disease. Dissemination of the list is to be accompanied by a description of diagnostic procedures, appropriate indications for their use, and a cautionary statement about the current status of Parkinson's disease research and treatment. The statement is to also indicate that DOH does not endorse specific Parkinson's disease programs or centers in this State.

In addition, the bill directs DOH, in consultation with the New Jersey Chapter of the American Parkinson Disease Association and the Movement Disorders Center at the Robert Wood Johnson University Medical Group, UMDNJ Robert Wood Johnson Medical School, to prepare an informational booklet in English and Spanish which provides information about the symptoms and treatment of Parkinson's disease.

DOH is to make a supply of the booklets available to all licensed health care facilities engaged in the diagnosis or treatment of Parkinson's disease and to those personnel described in the bill, as well as to health care professionals, community health centers, and members of the public upon their request. DOH is to publicize and make available the booklet to the maximum extent possible, and to make available electronically on its Internet website in English and Spanish the information contained in the booklet.