I 

114TH CONGRESS 

1ST SESSION H. R. 842 

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 

FEBRUARY 10, 2015 

Mr. KINZINGER of Illinois (for himself, Mr. PASCRELL, Mr. SESSIONS, Ms. 

SLAUGHTER, Mr. ROGERS of Kentucky, Mrs. LOWEY, Ms. JENKINS of 

Kansas, Mr. VAN HOLLEN, Ms. DELAURO, Mr. KELLY of Pennsylvania, 

Mr. BLUMENAUER, Mr. KIND, Mr. THOMPSON of California, Mr. LARSON

of Connecticut, Mr. CROWLEY, Mr. LEWIS, Mr. RANGEL, Ms. LINDA T. 

SA ́NCHEZ of California, Mrs. BLACKBURN, Mr. LANCE, Mrs. ELLMERS, 

Mr. MCKINLEY, Mr. HARPER, Mr. BUTTERFIELD, Mr. CA ́RDENAS, Mr. 

BEN RAY LUJA ́N of New Mexico, Ms. MATSUI, Mr. KENNEDY, Mr. 

LOEBSACK, Mr. MCNERNEY, Mr. TONKO, Mr. YARMUTH, Mr. AMODEI, 

Mr. FRELINGHUYSEN, Ms. HERRERA BEUTLER, Mr. JOYCE, Mr. STEWART, Mr. HONDA, Ms. LEE, Ms. ROYBAL-ALLARD, Ms. KAPTUR, Ms. 

MCCOLLUM, Mr. FATTAH, Mr. ISRAEL, Ms. PINGREE, Mr. RUPPERSBERGER, Mr. RYAN of Ohio, Mr. WITTMAN, Mr. KING of New York, Mr. 

SENSENBRENNER, Mr. DUNCAN of Tennessee, Mr. HUNTER, Mr. PETERSON, Mr. HIGGINS, Mr. PAYNE, Mrs. CAROLYN B. MALONEY of New 

York, Mr. CONYERS, Mr. DEFAZIO, Ms. BROWN of Florida, Mr. CARSON

of Indiana, Ms. CLARK of Massachusetts, Mr. DELANEY, Ms. ESTY, Mr. 

FOSTER, Mr. POE of Texas, Mr. HECK of Washington, Mr. HINOJOSA, 

Mr. JOHNSON of Georgia, Mr. KILDEE, Mr. LARSEN of Washington, Mr. 

RIBBLE, Mr. THOMPSON of Pennsylvania, Mr. LIPINSKI, Mr. LYNCH, Mr. 

MCGOVERN, Mr. POCAN, Mr. POLIS, Mr. SIRES, Mr. FARENTHOLD, Mr. 

MASSIE, Ms. BROWNLEY of California, Mrs. BUSTOS, Mr. CARTWRIGHT, 

Mr. POSEY, Mr. COHEN, Ms. DELBENE, Mr. GRAYSON, Mr. YOUNG of 

Alaska, Mr. SMITH of New Jersey, Ms. BONAMICI, Mr. SWALWELL of 

California, Ms. TSONGAS, Mr. AUSTIN SCOTT of Georgia, Mr. AL GREEN

of Texas, Mr. HASTINGS, Mr. LANGEVIN, Mr. LOWENTHAL, Mrs. 

NAPOLITANO, Ms. NORTON, Mr. SCHIFF, Mr. DAVID SCOTT of Georgia, 

Mr. TAKANO, Mr. HUIZENGA of Michigan, and Mr. HUFFMAN) introduced the following bill; which was referred to the Committee on Ways 

and Means 


asabaliauskas on DSK5VPTVN1PROD with BILLS
2 

•HR 842 IH

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 2015’’. 

6 SEC. 2. FINDINGS. 

7 Congress makes the following findings: 

8 (1) Huntington’s Disease is a progressive de9 generative neurological disease that causes total 

10 physical and mental deterioration. In the United 

11 States, approximately 30,000 individuals are af12 fected by Huntington’s Disease, along with another 

13 200,000 individuals who are genetically ‘‘at risk’’. 

14 There is no effective treatment in terms of halting 

15 or slowing the progression of the disease. 

16 (2) Clinical indicators of Huntington’s Disease 

17 include— 

18 (A) loss of ability to control bodily move19 ments; 


asabaliauskas on DSK5VPTVN1PROD with BILLS
3 

•HR 842 IH

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

2 inability to learn new material, and loss of 

3 memory; and 

4 (C) behavioral or psychological problems, 

5 including personality changes, irritability, mood 

6 swings, anxiety, obsessive-compulsive behavior, 

7 inability to concentrate, decreased motivation, 

8 and severe depression. 

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

10 results in the development of symptoms in individ11 uals between 30 and 50 years of age. Late-onset 

12 Huntington’s Disease is characterized by develop13 ment of symptoms after 50 years of age and is usu14 ally associated with a milder course of the disease. 

15 Juvenile Huntington’s Disease affects individuals 

16 who have yet to attain 19 years of age and pro17 gresses at a more rapid rate. 

18 (4) Because of the incapacitating nature of 

19 Huntington’s Disease, individuals living with this ill20 ness, including those in the early stages of the dis21 ease, are unable to retain employment. As a result, 

22 many such individuals rely solely on Social Security 

23 Disability Insurance. 

24 (5) Despite significant advances in medicine 

25 and a greater understanding of Huntington’s DisVerDate Sep 11 2014 21:34 Feb 17, 2015 Jkt 049200 PO 00000 Frm 00003 Fmt 6652 Sfmt 6201 E:\BILLS\H842.IH H842

asabaliauskas on DSK5VPTVN1PROD with BILLS
4 

•HR 842 IH

1 ease, the Social Security Administration has not 

2 comprehensively revised its rules for the medical 

3 evaluation of neurological disabilities since 1985. 

4 The designation of this disease by the Social Secu5 rity Administration as ‘‘Huntington’s Chorea’’ is 

6 both outdated and medically inaccurate, as this term 

7 fails to recognize the behavioral and cognitive impact 

8 of Huntington’s Disease, while also providing an in9 complete characterization of the full spectrum of 

10 Huntington’s Disease for purposes of Social Security 

11 Disability Insurance and the Medicare program. 

12 (6) After qualifying for Social Security Dis13 ability Insurance, individuals with Huntington’s Dis14 ease must wait another 24 months before receiving 

15 benefits under the Medicare program, despite the 

16 fact that such individuals often become incapacitated 

17 before reaching the age-eligibility requirement under 

18 the Medicare program of 65 years of age. 

19 (7) In 2000, the Centers for Medicaid & Medi20 care Services waived the 24-month waiting period re21 quirement for people disabled by amyotrophic lateral 

22 sclerosis (‘‘ALS’’), a degenerative neurological condi23 tion that is similar to Huntington’s Disease. 

24 (8) In light of the outdated Social Security Dis25 ability Insurance guidelines for Huntington’s DisVerDate Sep 11 2014 21:34 Feb 17, 2015 Jkt 049200 PO 00000 Frm 00004 Fmt 6652 Sfmt 6201 E:\BILLS\H842.IH H842

asabaliauskas on DSK5VPTVN1PROD with BILLS
5 

•HR 842 IH

1 ease and the significant cognitive, behavioral, and 

2 physical incapacitation faced by individuals with this 

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

4 medical and evaluation criteria used by the Social 

5 Security Administration in determining whether 

6 such individuals are disabled, as well as removal of 

7 the 24-month waiting period for coverage under the 

8 Medicare program for such individuals, similar to 

9 the existing exemption for individuals who have been 

10 diagnosed with ALS. 

11 SEC. 3. REVISION OF MEDICAL AND EVALUATION CRITERIA 

12 FOR EVALUATING DISABILITY CAUSED BY 

13 ADULT-ONSET AND JUVENILE HUNTINGTON’S 

14 DISEASE. 

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

16 cognitive, behavioral, and physical disability under titles 

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

18 of Social Security, in consultation with the National Insti19 tute of Neurological Disorders and Stroke, the National 

20 Institutes of Health, and other relevant organizations with 

21 medical expertise relating to Adult-Onset and Juvenile 

22 Huntington’s Disease, shall, not later than 180 days after 

23 the date of the enactment of this Act— 


asabaliauskas on DSK5VPTVN1PROD with BILLS
6 

•HR 842 IH

1 (1) amend section 11.00 of part A of the List2 ing of Impairments (relating to neurological impair3 ments of adults) by— 

4 (A) providing medical and evaluation cri5 teria for Huntington’s Disease; and 

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

7 place it appears; 

8 (2) amend section 12.00 of part A of the List9 ing of Impairments (relating to mental disorders of 

10 adults) by providing medical and evaluation criteria 

11 for Huntington’s Disease; 

12 (3) amend section 111.00 of part B of the List13 ing of Impairments (relating to neurological impair14 ments of children) by providing medical and evalua15 tion criteria for Juvenile Huntington’s Disease; and 

16 (4) amend section 112.00 of part B of the List17 ing of Impairments (relating to mental disorders of 

18 children) by providing medical and evaluation cri19 teria for Juvenile Huntington’s Disease. 

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

21 section, the term ‘‘Listing of Impairments’’ means appen22 dix 1 to subpart P of part 404 of title 20 of the Code 

23 of Federal Regulations. 


asabaliauskas on DSK5VPTVN1PROD with BILLS
7 

•HR 842 IH

1 SEC. 4. WAIVER OF 24-MONTH WAITING PERIOD FOR COV2 ERAGE UNDER MEDICARE PROGRAM FOR IN3 DIVIDUALS DIAGNOSED WITH HUNTINGTON’S 

4 DISEASE. 

5 (a) IN GENERAL.—Section 226(h) of the Social Secu6 rity Act (42 U.S.C. 426(h)) is amended, in the matter pre7 ceding paragraph (1), by inserting ‘‘or Huntington’s Dis8 ease (HD)’’ after ‘‘amyotrophic lateral sclerosis (ALS)’’. 

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

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

11 the Social Security Act with respect to items and services 

12 furnished in months beginning after the date of the enact13 ment of this Act. 

Æ 


asabaliauskas on DSK5VPTVN1PROD with BILLS