Huntington's Disease Parity Act of 2013 - Directs the Commissioner of Social Security, for purposes of determining cognitive, behavioral, and physical disability under titles II (Old Age, Survivors, and Disability Insurance) (OASDI) and XVI (Supplemental Security Income) (SSI) of the Social Security Act (SSA), to amend specified Listings of Impairments by providing medical and evaluation criteria for Huntington's Disease.
Amends SSA title II to waive the 24-month waiting period for coverage under the Medicare program for individuals diagnosed with Huntington's Disease.
[Congressional Bills 113th Congress]
[From the U.S. Government Publishing Office]
[S. 723 Introduced in Senate (IS)]
113th CONGRESS
1st Session
S. 723
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
April 15, 2013
Mrs. Gillibrand (for herself, Mr. Tester, and Mr. Blumenthal)
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
2013''.
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.
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Introduced in Senate
Read twice and referred to the Committee on Finance.
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