I 

111TH CONGRESS 

1ST SESSION H. R. 678 

To require the Commissioner of Social Security to revise the medical criteria 

for evaluating 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 

JANUARY 26, 2009 

Mr. FILNER 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 criteria for evaluating 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 2009’’. 

6 SEC. 2. FINDINGS. 

7 Congress makes the following findings: 


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1 (1) Huntington’s Disease is a progressive de2 generative neurological disease that causes total 

3 physical and mental deterioration over a 12 to 15 

4 year period. It affects 30,000 patients and 200,000 

5 individuals are genetically ‘‘at risk’’ in the United 

6 States. 

7 (2) Huntington’s Disease has a triad of clinical 

8 features, including motor abnormalities, dementia, 

9 and disorders of mood and perception. While move10 ment disorders are most commonly associated with 

11 Huntington’s Disease, early symptoms are often 

12 emotional and psychiatric. This may include person13 ality changes, irritability, mood swings, depression, 

14 obsessive-compulsive behavior, inability to con15 centrate, and decreased motivation. 

16 (3) Because of its incapacitating nature, people 

17 with Huntington’s disease, including those in the 

18 early stages of the disease, are unable to retain em19 ployment. As a result, many people with Hunting20 ton’s Disease rely solely on Social Security Disability 

21 Income. 

22 (4) Despite significant advances in medicine 

23 and greater understanding of disability, the Social 

24 Security Administration has not comprehensively reVerDate Nov 24 2008 22:50 Jan 29, 2009 Jkt 079200 PO 00000 Frm 00002 Fmt 6652 Sfmt 6201 E:\BILLS\H678.IH H678

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1 vised its rules for the medical evaluation of neuro2 logical disabilities since 1985. 

3 (5) Because people with Huntington’s Disease 

4 are frequently not employed, many families have lost 

5 their employer-provided health insurance benefits. 

6 As a result, many people with Huntington’s Disease 

7 do not receive necessary treatment during the early 

8 stages of the disease. 

9 (6) In 2000, the Centers for Medicaid & Medi10 care Services waived the 24-month waiting period re11 quirement for people disabled by ALS (amyotropic 

12 lateral sclerosis), a degenerative neurological condi13 tion similar to Huntington’s Disease. 

14 SEC. 3. REVISION OF THE MEDICAL CRITERIA FOR EVALU15 ATING DISABILITY CAUSED BY ADULT-ONSET 

16 HUNTINGTON’S DISEASE. 

17 The Commissioner of Social Security shall revise the 

18 regulations prescribed by the Commissioner set forth as 

19 appendix 1 to subpart P of part 404 of title 20 of the 

20 Code of Federal Regulations (relating to the listing of im21 pairments, published by the Social Security Administra22 tion as ‘‘Disability Evaluation Under Social Security’’, 

23 and commonly referred to as the ‘‘Blue Book’’), as follows: 

24 (1) The Commissioner shall insert after 11.00G 

25 the following: 


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1 ‘‘H. Huntington’s Disease. Huntington’s Disease is an in2 herited neuropsychiatric disorder that is progressive and 

3 terminates in death of the affected person. Recovery or 

4 remission never occurs. Treatment is ineffective in terms 

5 of halting or slowing the progression of the disease. The 

6 usual age of adult onset is between the ages of 30 and 

7 50, although the age of adult onset may be younger or 

8 older. Incapacitation occurs relatively early in the course 

9 of this debilitating illness with progression to total dis10 ability and dependency for all activities of daily living. 

11 There are three characteristic clinical features: (1) loss of 

12 ability to control bodily movements; (2) loss of ability to 

13 think and act quickly, to learn new material and to re14 member, and (3) apathy, personality changes, irritability, 

15 mood swings, depression, anxiety, inability to concentrate, 

16 decreased motivation, obsessive-compulsive disorder, and 

17 severe depression. Individuals with Huntington’s Disease 

18 also exhibit poor social judgment and may be irritable and 

19 aggressive. Inability to work is due to a combination of 

20 cognitive disturbance, behavioral or mood changes, poor 

21 coordination of voluntary movements, and the presence of 

22 involuntary movements. Individuals with Huntington’s 

23 Disease, even in the relatively early stages, have particular 

24 difficulty with decision-making, multi-tasking, and per25 forming under time pressure or with the stress of interVerDate Nov 24 2008 22:50 Jan 29, 2009 Jkt 079200 PO 00000 Frm 00004 Fmt 6652 Sfmt 6201 E:\BILLS\H678.IH H678

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1 personal interactions. The course of the disease varies 

2 among individuals and families. The cognitive and behav3 ioral problems may become debilitating before disorganiza4 tion of motor functions. For other individuals, the motor 

5 dysfunction may appear first.’’. 

6 (2) The Commissioner shall insert after 11.14 

7 the following: 

8 ‘‘11.15 Huntington’s Disease. With: 

9 ‘‘A. disorganization of motor function as de10 scribed in 11.04B; or 

11 ‘‘B. chronic brain syndrome. Evaluate under 

12 12.02, 12.04, and 12.06.’’. 

13 (3) The Commissioner shall remove the ref14 erence in 11.17 to ‘‘Huntington’s Chorea’’. 

15 SEC. 4. REVISION OF THE MEDICAL CRITERIA FOR EVALU16 ATING DISABILITY CAUSED BY JUVENILE 

17 HUNTINGTON’S DISEASE. 

18 The Commissioner of Social Security shall revise fur19 ther the regulations described in section 3 as follows: 

20 (1) The Commissioner shall insert after 

21 111.00E the following: 

22 ‘‘F. Juvenile Huntington’s Disease. While there is no 

23 symptom or group of symptoms that are absolutely re24 quired for the diagnosis of juvenile Huntington’s Disease, 

25 most affected children offer several of the following feaVerDate Nov 24 2008 22:50 Jan 29, 2009 Jkt 079200 PO 00000 Frm 00005 Fmt 6652 Sfmt 6201 E:\BILLS\H678.IH H678

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1 tures at the time that the diagnosis is made: motor dys2 function, characterized by rigidity and dystonia, seizures, 

3 declining cognitive function, behavioral or psychiatric 

4 problems such as depression, aggressiveness and impul5 siveness, irritability, mood swings, and obsessions. Hun6 tington’s Disease is a hereditary disorder and individuals 

7 with very early onset of Huntington’s Disease are far more 

8 likely to have an affected father than an affected moth9 er.’’. 

10 (2) The Commissioner shall insert after 111.09 

11 the following: 

12 ‘‘111.10. Junvenile Huntington’s Disease. With: 

13 ‘‘A. Motor dysfunction. Evaluate under 111.06; 

14 or 

15 ‘‘B. Behavioral or psychiatric problems. Evalu16 ate under 112.02, 112.06, and 112.08.’’. 

17 SEC. 5. ELIMINATION OF 24-MONTH MEDICARE DISABILITY 

18 WAITING PERIOD IN CASES OF INDIVIDUALS 

19 WITH DISABLING HUNTINGTON’S DISEASE. 

20 (a) IN GENERAL.—Section 226(h) of the Social Secu21 rity Act (42 U.S.C. 426(h)) is amended, in the matter pre22 ceding paragraph (1), by inserting ‘‘or Huntington’s Dis23 ease’’ after ‘‘amyotrophic lateral sclerosis (ALS)’’. 

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

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


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1 the Social Security Act with respect to items and services 

2 furnished in months beginning after the date of the enact3 ment of this Act. 

Æ 


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