S 648
112th CONGRESS
1st Session
S. 648
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 SENATE OF THE UNITED STATES
March 17, 2011
Mrs. GILLIBRAND introduced the following bill; which was read twice
and referred to the Committee on Finance
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
6 months after the date of 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,
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
