THE GENERAL ASSEMBLY OF PENNSYLVANIA
HOUSE BILL

No. 2240 Session of 2001

INTRODUCED BY L. I. COHEN, BEBKO-JONES, CAPPELLI, COLAFELLA,
CREIGHTON, CURRY, DALEY, DeLUCA, FRANKEL, GEORGE, HARHAI,
HORSEY, JAMES, JOSEPHS, KENNEY, LAUGHLIN, MELIO, PALLONE,
PETRARCA, PISTELLA, SAYLOR, SHANER, STABACK, STEELMAN,
E. Z. TAYLOR, THOMAS, TRELLO, WATSON, C. WILLIAMS AND
YOUNGBLOOD, DECEMBER 12, 2001

REFERRED TO COMMITTEE ON HEALTH AND HUMAN SERVICES,
DECEMBER 12, 2001

                      AN ACT

 1  Establishing standards of care for Huntington's disease
 2     patients; providing for the powers and duties of the
 3     Department of Health; and imposing penalties.

 4     The General Assembly of the Commonwealth of Pennsylvania
 5  hereby enacts as follows:
 
 6  Section 1.  Short title.
 7     This act shall be known and may be cited as the Huntington's
 8  Disease Quality of Care Act.
 
 9  Section 2.  Legislative findings.
10     The General Assembly finds and declares as follows:
11         (1)  About 30,000 people have Huntington's disease in the
12     United States; estimates of its prevalence are about one in
13     every 10,000 persons. At least 150,000 others have a 50% risk
14     of developing the disease, and thousands more of their
15     relatives live with the possibility that they, too, might
16     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
31     disincentives for many nursing homes to provide specialized
32     services to care for individuals with Huntington's disease.
33     The limited options for residential care are compounded by
34     several interrelated factors:
35             (i)  Huntington's disease patients tend to age in
36         place. Their long lengths of stay reduce placement
37         opportunities for other affected individuals.
38             (ii)  Due to the progressive course of their disease,
39         the care needs of Huntington's patients become more
40         complex and costly.
41             (iii)  Due to the complex and intensive medical,
42         nursing, rehabilitative and psychological care needs of
43         this population, Huntington's disease is best treated in
44         discrete units by an interdisciplinary team as opposed to
45         scattered beds, a costly option for most nursing homes.
46             (iv)  Their care needs are more expensive as compared
47         with the traditional geriatric nursing home resident.

48  Section 3.  Duties of Department of Health.
49     (a)  Regulations.--The Department of Health shall promulgate
50  regulations to ensure the quality of care for Huntington's
51  disease patients in all care settings licensed by the department
52  as soon as practicable to implement this act. The regulations
53  shall be as consistent as possible with applicable Federal
54  regulations and the legislative findings of the General
55  Assembly.
56     (b)  Administrative fees.--The department shall assess the
57  reasonableness of administrative fees on all care settings
58  licensed by the department to cover the costs of applicable
59  administrative actions.

60  Section 4.  Effective date.
61     This act shall take effect in 60 days.