II 

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. 

1 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled, 

3 SECTION 1. SHORT TITLE. 

4 This Act may be cited as the ‘‘Huntington’s Disease 

5 Parity Act of 2011’’. 


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1 SEC. 2. FINDINGS. 

2 Congress makes the following findings: 

3 (1) Huntington’s Disease is a progressive de4 generative neurological disease that causes total 

5 physical and mental deterioration. In the United 

6 States, approximately 30,000 individuals are af7 fected by Huntington’s Disease, along with another 

8 200,000 individuals who are genetically ‘‘at risk’’. 

9 There is no effective treatment in terms of halting 

10 or slowing the progression of the disease. 

11 (2) Clinical indicators of Huntington’s Disease 

12 include— 

13 (A) loss of ability to control bodily move14 ments; 

15 (B) loss of ability to think or act quickly, 

16 inability to learn new material, and loss of 

17 memory; and 

18 (C) behavioral or psychological problems, 

19 including personality changes, irritability, mood 

20 swings, anxiety, obsessive-compulsive behavior, 

21 inability to concentrate, decreased motivation, 

22 and severe depression. 

23 (3) Adult-onset Huntington’s Disease typically 

24 results in the development of symptoms in individ25 uals between 30 and 50 years of age. Late-onset 

26 Huntington’s Disease is characterized by developVerDate Mar 15 2010 23:57 Mar 24, 2011 Jkt 099200 PO 00000 Frm 00002 Fmt 6652 Sfmt 6201 E:\BILLS\S648.IS S648

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1 ment of symptoms after 50 years of age and is usu2 ally associated with a milder course of the disease. 

3 Juvenile Huntington’s Disease affects individuals 

4 who have yet to attain 19 years of age and pro5 gresses at a more rapid rate. 

6 (4) Because of the incapacitating nature of 

7 Huntington’s Disease, individuals living with this ill8 ness, including those in the early stages of the dis9 ease, are unable to retain employment. As a result, 

10 many such individuals rely solely on Social Security 

11 Disability Insurance. 

12 (5) Despite significant advances in medicine 

13 and a greater understanding of Huntington’s Dis14 ease, the Social Security Administration has not 

15 comprehensively revised its rules for the medical 

16 evaluation of neurological disabilities since 1985. 

17 The designation of this disease by the Social Secu18 rity Administration as ‘‘Huntington’s Chorea’’ is 

19 both outdated and medically inaccurate, as this term 

20 fails to recognize the behavioral and cognitive impact 

21 of Huntington’s Disease, while also providing an in22 complete characterization of the full spectrum of 

23 Huntington’s Disease for purposes of Social Security 

24 Disability Insurance and the Medicare program. 


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1 (6) After qualifying for Social Security Dis2 ability Insurance, individuals with Huntington’s Dis3 ease must wait another 24 months before receiving 

4 benefits under the Medicare program, despite the 

5 fact that such individuals often become incapacitated 

6 before reaching the age-eligibility requirement under 

7 the Medicare program of 65 years of age. 

8 (7) In 2000, the Centers for Medicaid & Medi9 care Services waived the 24-month waiting period re10 quirement for people disabled by amyotrophic lateral 

11 sclerosis (‘‘ALS’’), a degenerative neurological condi12 tion that is similar to Huntington’s Disease. 

13 (8) In light of the outdated Social Security Dis14 ability Insurance guidelines for Huntington’s Dis15 ease and the significant cognitive, behavioral, and 

16 physical incapacitation faced by individuals with this 

17 disease, there is an urgent need for a revision of the 

18 medical and evaluation criteria used by the Social 

19 Security Administration in determining whether 

20 such individuals are disabled, as well as removal of 

21 the 24-month waiting period for coverage under the 

22 Medicare program for such individuals, similar to 

23 the existing exemption for individuals who have been 

24 diagnosed with ALS. 


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1 SEC. 3. REVISION OF MEDICAL AND EVALUATION CRITERIA 

2 FOR EVALUATING DISABILITY CAUSED BY 

3 ADULT-ONSET AND JUVENILE HUNTINGTON’S 

4 DISEASE. 

5 (a) IN GENERAL.—For purposes of determinations of 

6 cognitive, behavioral, and physical disability under titles 

7 II and XVI of the Social Security Act, the Commissioner 

8 of Social Security, in consultation with the National Insti9 tute of Neurological Disorders and Stroke, the National 

10 Institutes of Health, and other relevant organizations with 

11 medical expertise relating to Adult-Onset and Juvenile 

12 Huntington’s Disease, shall, not later than 6 months after 

13 the date of enactment of this Act— 

14 (1) amend section 11.00 of part A of the List15 ing of Impairments (relating to neurological impair16 ments of adults) by— 

17 (A) providing medical and evaluation cri18 teria for Huntington’s Disease; and 

19 (B) striking ‘‘Huntington’s Chorea’’ each 

20 place it appears; 

21 (2) amend section 12.00 of part A of the List22 ing of Impairments (relating to mental disorders of 

23 adults) by providing medical and evaluation criteria 

24 for Huntington’s Disease; 

25 (3) amend section 111.00 of part B of the List26 ing of Impairments (relating to neurological impairVerDate Mar 15 2010 23:57 Mar 24, 2011 Jkt 099200 PO 00000 Frm 00005 Fmt 6652 Sfmt 6201 E:\BILLS\S648.IS S648

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1 ments of children) by providing medical and evalua2 tion criteria for Juvenile Huntington’s Disease; and 

3 (4) amend section 112.00 of part B of the List4 ing of Impairments (relating to mental disorders of 

5 children) by providing medical and evaluation cri6 teria for Juvenile Huntington’s Disease. 

7 (b) LISTING OF IMPAIRMENTS.—For purposes of this 

8 section, the term ‘‘Listing of Impairments’’ means appen9 dix 1 to subpart P of part 404 of title 20, Code of Federal 

10 Regulations. 

11 SEC. 4. WAIVER OF 24-MONTH WAITING PERIOD FOR COV12 ERAGE UNDER MEDICARE PROGRAM FOR IN13 DIVIDUALS DIAGNOSED WITH HUNTINGTON’S 

14 DISEASE. 

15 (a) IN GENERAL.—Section 226(h) of the Social Secu16 rity Act (42 U.S.C. 426(h)) is amended, in the matter pre17 ceding paragraph (1), by inserting ‘‘or Huntington’s Dis18 ease (HD)’’ after ‘‘amyotrophic lateral sclerosis (ALS)’’. 

19 (b) EFFECTIVE DATE.—The amendment made by 

20 subsection (a) shall apply to benefits under title XVIII of 

21 the Social Security Act with respect to items and services 

22 furnished in months beginning after the date of the enact23 ment of this Act. 

Æ 


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