HR 718
112th CONGRESS
1st Session
H. R. 718
To require the Commissioner of Social Security to revise the medical
and evaluation criteria for determining disability in a person diagnosed with
Huntington's Disease and to waive the 24-month waiting period for Medicare
eligibility for individuals disabled by Huntington's Disease.
IN THE HOUSE OF REPRESENTATIVES
February 15, 2011
Mr. FILNER introduced the following bill; which was referred to the Committee
on Ways and Means
A BILL
To require the Commissioner of Social Security to revise the medical
and evaluation criteria for determining disability in a person diagnosed with
Huntington's Disease and to waive the 24-month waiting period for Medicare
eligibility for individuals disabled by Huntington's Disease.
Be it enacted by the Senate and House of Representatives of the United
States of America in Congress assembled,
SECTION 1. SHORT TITLE.
This Act may be cited as the `Huntington's Disease Parity Act of 2011'.
SEC. 2. FINDINGS.
Congress makes the following findings:
(1) Huntington's Disease is a progressive degenerative neurological disease
that causes total physical and mental deterioration. In the United States,
approximately 30,000 individuals are affected by Huntington's Disease, along
with another 200,000 individuals who are genetically `at risk'. There is
no effective treatment in terms of halting or slowing the progression of
the disease.
(2) Clinical indicators of Huntington's Disease include--
(A) loss of ability to control bodily movements;
(B) loss of ability to think or act quickly, inability to learn new material,
and loss of memory; and
(C) behavioral or psychological problems, including personality changes,
irritability, mood swings, anxiety, obsessive-compulsive behavior, inability
to concentrate, decreased motivation, and severe depression.
(3) Adult-onset Huntington's Disease typically results in the development
of symptoms in individuals between 30 and 50 years of age. Late-onset Huntington's
Disease is characterized by development of symptoms after 50 years of age
and is usually associated with a milder course of the disease. Juvenile
Huntington's Disease affects individuals who have yet to attain 19 years
of age and progresses at a more rapid rate.
(4) Because of the incapacitating nature of Huntington's Disease, individuals
living with this illness, including those in the early stages of the disease,
are unable to retain employment. As a result, many such individuals rely
solely on Social Security Disability Insurance.
(5) Despite significant advances in medicine and a greater understanding
of Huntington's Disease, the Social Security Administration has not comprehensively
revised its rules for the medical evaluation of neurological disabilities
since 1985. The designation of this disease by the Social Security Administration
as `Huntington's Chorea' is both outdated and medically inaccurate, as this
term fails to recognize the behavioral and cognitive impact of Huntington's
Disease, while also providing an incomplete characterization of the full
spectrum of Huntington's Disease for purposes of Social Security Disability
Insurance and the Medicare program.
(6) After qualifying for Social Security Disability Insurance, individuals
with Huntington's Disease must wait another 24 months before receiving benefits
under the Medicare program, despite the fact that such individuals often
become incapacitated before reaching the age-eligibility requirement under
the Medicare program of 65 years of age.
(7) In 2000, the Centers for Medicaid & Medicare Services waived the
24-month waiting period requirement for people disabled by amyotrophic lateral
sclerosis (`ALS'), a degenerative neurological condition that is similar
to Huntington's Disease.
(8) In light of the outdated Social Security Disability Insurance guidelines
for Huntington's Disease and the significant cognitive, behavioral, and
physical incapacitation faced by individuals with this disease, there is
an urgent need for a revision of the medical and evaluation criteria used
by the Social Security Administration in determining whether such individuals
are disabled, as well as removal of the 24-month waiting period for coverage
under the Medicare program for such individuals, similar to the existing
exemption for individuals who have been diagnosed with ALS.
SEC. 3. REVISION OF MEDICAL AND EVALUATION CRITERIA FOR EVALUATING DISABILITY
CAUSED BY ADULT-ONSET AND JUVENILE HUNTINGTON'S DISEASE.
(a) In General- For purposes of determinations of cognitive, behavioral, and
physical disability under titles II and XVI of the Social Security Act, the
Commissioner of Social Security, in consultation with the National Institute
of Neurological Disorders and Stroke, the National Institutes of Health, and
other relevant organizations with medical expertise relating to Adult-Onset
and Juvenile Huntington's Disease, shall, not later than 180 days after the
date of the enactment of this Act--
(1) amend section 11.00 of part A of the Listing of Impairments (relating
to neurological impairments of adults) by--
(A) providing medical and evaluation criteria for Huntington's Disease;
and
(B) striking `Huntington's Chorea' each place it appears;
(2) amend section 12.00 of part A of the Listing of Impairments (relating
to mental disorders of adults) by providing medical and evaluation criteria
for Huntington's Disease;
(3) amend section 111.00 of part B of the Listing of Impairments (relating
to neurological impairments of children) by providing medical and evaluation
criteria for Juvenile Huntington's Disease; and
(4) amend section 112.00 of part B of the Listing of Impairments (relating
to mental disorders of children) by providing medical and evaluation criteria
for Juvenile Huntington's Disease.
(b) Listing of Impairments- For purposes of this section, the term `Listing
of Impairments' means appendix 1 to subpart P of part 404 of title 20 of the
Code of Federal Regulations.
SEC. 4. WAIVER OF 24-MONTH WAITING PERIOD FOR COVERAGE UNDER MEDICARE PROGRAM
FOR INDIVIDUALS DIAGNOSED WITH HUNTINGTON'S DISEASE.
(a) In General- Section 226(h) of the Social Security Act (42 U.S.C. 426(h))
is amended, in the matter preceding paragraph (1), by inserting `or Huntington's
Disease (HD)' after `amyotrophic lateral sclerosis (ALS)'.
(b) Effective Date- The amendment made by subsection (a) shall apply to benefits
under title XVIII of the Social Security Act with respect to items and services
furnished in months beginning after the date of the enactment of this Act.
END
