I 
113TH CONGRESS 
1ST SESSION H. R. 1015 
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 
MARCH 6, 2013 
Mr. PASCRELL (for himself and Mr. KINZINGER of Illinois) 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 dis-
ability 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 Dis-
ease. 
Be it enacted by the Senate and House of Representa-
tives 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’’. 
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SEC. 2. FINDINGS. 
Congress makes the following findings: 
(1) Huntington’s Disease is a progressive de-
generative neurological disease that causes total 
physical and mental deterioration. In the United 
States, approximately 30,000 individuals are af-
fected 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 move-
ments; 
(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 individ-
uals between 30 and 50 years of age. Late-onset 
Huntington’s Disease is characterized by develop-
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ment of symptoms after 50 years of age and is usu-
ally associated with a milder course of the disease. 
Juvenile Huntington’s Disease affects individuals 
who have yet to attain 19 years of age and pro-
gresses at a more rapid rate. 
(4) Because of the incapacitating nature of 
Huntington’s Disease, individuals living with this ill-
ness, including those in the early stages of the dis-
ease, 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 Dis-
ease, 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 Secu-
rity 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 in-
complete characterization of the full spectrum of 
Huntington’s Disease for purposes of Social Security 
Disability Insurance and the Medicare program. 
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(6) After qualifying for Social Security Dis-
ability Insurance, individuals with Huntington’s Dis-
ease 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 & Medi-
care Services waived the 24-month waiting period re-
quirement for people disabled by amyotrophic lateral 
sclerosis (‘‘ALS’’), a degenerative neurological condi-
tion that is similar to Huntington’s Disease. 
(8) In light of the outdated Social Security Dis-
ability Insurance guidelines for Huntington’s Dis-
ease 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. 
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