ASSEMBLY, No. 2576

STATE OF NEW JERSEY

216th LEGISLATURE

INTRODUCED FEBRUARY 10, 2014

 


 

Sponsored by:

Assemblyman† RAJ MUKHERJI

District 33 (Hudson)

Assemblywoman† ANNETTE QUIJANO

District 20 (Union)

Assemblywoman† NANCY J. PINKIN

District 18 (Middlesex)

 

Co-Sponsored by:

Assemblyman Benson

 

 

 

 

SYNOPSIS

†††† ďParkinsonís Disease Public Awareness and Education Act.Ē

 

CURRENT VERSION OF TEXT

†††† As introduced.

††


An Act concerning Parkinsonís 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 ďParkinson's Disease Public Awareness and Education Act.Ē

 

†††† 2.††† The Legislature finds and declares that:

†††† a.††† Parkinsonís 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.††† Parkinsonís 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 Parkinsonís 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.††† Parkinsonís 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 Parkinsonís 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.††† Parkinsonís 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 ďMorris K. Udall Parkinsonís Disease Research Act of 1997,Ē Pub.L.105-78, provides federal funding through the National Institutes of Health for Parkinsonís disease, and April 11 has been proclaimed to be World Parkinsonís 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 ďParkinsonís Disease Awareness MonthĒ 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 Parkinsonís 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 Parkinsonís disease.

 

†††† 3.††† As used in this act:

†††† ďCommissionerĒ means the Commissioner of Health and Senior Services.

†††† ďDepartmentĒ means the Department of Health and Senior Services.

†††† ďProgramĒ means the Parkinsonís disease public awareness and education program established pursuant to this act.

 

†††† 4.††† The Commissioner of Health and Senior Services shall establish a Parkinsonís disease public awareness and education program.

†††† a.††† The purpose of the program shall be to promote public awareness of Parkinsonís 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 Parkinsonís 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 Parkinsonís disease, including, but not limited to, nutrition, diet, and physical exercise;

†††† (d)†† environmental safety and injury prevention; and

†††† (e)†† availability of Parkinsonís 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 Parkinsonís 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 Parkinsonís disease.† The booklet may contain any other information that the commissioner deems necessary and may be revised by the department whenever new information about Parkinsonís 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 Parkinsonís 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 and Senior Services, pursuant to the ďAdministrative Procedure Act,Ē 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 and Senior Services 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 ďParkinsonís Disease Public Awareness and Education Act,Ē establishes a Parkinsonís disease public awareness and education program in the Department of Health and Senior Services (DHSS).

†††† 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 Parkinsonís 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 Parkinsonís 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 Parkinsonís 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 Parkinsonís disease research and treatment.† The statement is to also indicate that DHSS does not endorse specific Parkinsonís disease programs or centers in this State.

†††† In addition, the bill directs DHSS, 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 Parkinsonís disease.

†††† DHSS is to make a supply of the booklets available to all licensed health care facilities engaged in the diagnosis or treatment of Parkinsonís 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.† DHSS 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.