PRINTER'S NO. 3923
No. 2640 Session of 2004
INTRODUCED BY WATSON, CLYMER, PICKETT, YOUNGBLOOD, BALDWIN,
BEBKO-JONES, BOYD, BROWNE, CRAHALLA, DAILEY, GOODMAN, JAMES,
S. MILLER, O'NEILL, PETRARCA, PISTELLA, SATHER, SOLOBAY,
T. STEVENSON, E. Z. TAYLOR AND TIGUE, MAY 25, 2004
REFERRED TO COMMITTEE ON HEALTH AND HUMAN SERVICES, MAY 25, 2004
AN ACT
1 Establishing adequate reimbursement standards for care
2 attributed to Huntington's disease for patients; and
3 providing for the powers and duties of the Department of
4 Public Welfare.
5 The General Assembly of the Commonwealth of Pennsylvania
6 hereby enacts as follows:
7 Section 1. Short title.
8 This act shall be known and may be cited as the Huntington's
9 Disease Adequate Reimbursement Act.
10 Section 2. Legislative findings.
11 The General Assembly finds and declares as follows:
12 (1) About 30,000 people have Huntington's disease in the
13 United States; estimates of its prevalence are about one in
14 every 10,000 persons. At least 150,000 others have a 50% risk
15 of developing the disease and thousands more of their
16 relatives live with the possibility that they, too, might
17 develop Huntington's disease.
1 (2) Huntington's disease results from genetically
2 programmed degeneration of nerve cells, called neurons, in
3 certain areas of the brain. This degeneration causes
4 uncontrolled movements, loss of intellectual faculties and
5 emotional disturbance. The disease affects structures within
6 the brain which coordinate movement, thought, perception and
7 memory. It is a pervasive disease.
8 (3) Huntington's disease is found in every country of
9 the world. It is a familial disease that is passed from
10 parent to child through a genetic mutation.
11 (4) Individuals with Huntington's disease face
12 progressive deterioration of their physical, emotional and
13 behavioral functions. Symptoms include chorea, or severe
14 involuntary movements of the extremities, unsteady gait,
15 inarticulate speech, dysphagia which places them at risk for
16 aspiration and pneumonia, cognitive loss and behavioral
17 problems. The management and care of this disease require a
18 skilled interdisciplinary team of workers, including nurses,
19 physicians, rehabilitation and recreational specialists,
20 nutritionists and social workers. Pharmacy, dentistry,
21 neurological and psychiatric services should also be readily
22 available to those individuals who suffer from this disease.
23 (5) There is no cure for Huntington's disease, but
24 current medications enable a much better quality of life for
25 those with Huntington's. Most drugs used to treat the
26 symptoms of Huntington's disease have side effects such as
27 fatigue, restlessness or hyperexcitability. While medicines
28 may help keep these clinical symptoms under control, there is
29 no treatment to stop or reverse the course of the disease.
30 (6) The lack of additional reimbursement creates
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1 disincentives for many nursing homes to provide specialized
2 services to care for individuals with Huntington's disease.
3 The limited options for residential care are compounded by
4 several interrelated factors:
5 (i) Huntington's disease patients tend to age in
6 place. Their long lengths of stay reduce placement
7 opportunities for other affected individuals.
8 (ii) Due to the progressive course of their disease,
9 the care needs of Huntington's patients become more
10 complex and costly.
11 (iii) Due to the complex and intensive medical,
12 nursing, rehabilitative and psychological care needs of
13 this population, Huntington's disease is best treated in
14 discrete units by an interdisciplinary team as opposed to
15 scattered beds, a costly option for most nursing homes.
16 (iv) Their care needs are more expensive as compared
17 to the traditional geriatric nursing home resident.
18 Section 3. Duties of Department of Public Welfare.
19 (a) Regulations.--The Department of Public Welfare shall
20 promulgate regulations as soon as practicable to implement this
21 act. The regulations shall be as consistent as possible with
22 applicable Federal regulations and the legislative findings of
23 the General Assembly.
24 (b) Administrative fees.--The department shall assess the
25 reasonableness of administrative fees promulgated by regulation
26 to cover the costs of applicable administrative actions.
27 Section 4. Effective date.
28 This act shall take effect in 60 days.
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