113 HR 1015 IH: Huntington’s Disease Parity Act of 2013
U.S. House of Representatives
2013-03-06
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EN
Pursuant to Title 17 Section 105 of the United States Code, this file is not subject to copyright protection and is in the public domain.
1.This Act may be cited as the
Huntington’s Disease Parity Act of
2013
.
2.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is both outdated and medically inaccurate,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.
3.Revision of
medical and evaluation criteria for evaluating disability caused by adult-onset
and juvenile Huntington’s Disease
(a)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)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.
4.Waiver of
24-month waiting period for coverage under Medicare program for individuals
diagnosed with Huntington's Disease
(a)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)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.