[Congressional Bills 111th Congress]
[From the U.S. Government Publishing Office]
[H.R. 678 Introduced in House (IH)]

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.

    Be it enacted by the Senate and House of Representatives 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 
2009''.

SEC. 2. FINDINGS.

    Congress makes the following findings:
            (1) Huntington's Disease is a progressive degenerative 
        neurological disease that causes total physical and mental 
        deterioration over a 12 to 15 year period. It affects 30,000 
        patients and 200,000 individuals are genetically ``at risk'' in 
        the United States.
            (2) Huntington's Disease has a triad of clinical features, 
        including motor abnormalities, dementia, and disorders of mood 
        and perception. While movement disorders are most commonly 
        associated with Huntington's Disease, early symptoms are often 
        emotional and psychiatric. This may include personality 
        changes, irritability, mood swings, depression, obsessive-
        compulsive behavior, inability to concentrate, and decreased 
        motivation.
            (3) Because of its incapacitating nature, people with 
        Huntington's disease, including those in the early stages of 
        the disease, are unable to retain employment. As a result, many 
        people with Huntington's Disease rely solely on Social Security 
        Disability Income.
            (4) Despite significant advances in medicine and greater 
        understanding of disability, the Social Security Administration 
        has not comprehensively revised its rules for the medical 
        evaluation of neurological disabilities since 1985.
            (5) Because people with Huntington's Disease are frequently 
        not employed, many families have lost their employer-provided 
        health insurance benefits. As a result, many people with 
        Huntington's Disease do not receive necessary treatment during 
        the early stages of the disease.
            (6) In 2000, the Centers for Medicaid & Medicare Services 
        waived the 24-month waiting period requirement for people 
        disabled by ALS (amyotropic lateral sclerosis), a degenerative 
        neurological condition similar to Huntington's Disease.

SEC. 3. REVISION OF THE MEDICAL CRITERIA FOR EVALUATING DISABILITY 
              CAUSED BY ADULT-ONSET HUNTINGTON'S DISEASE.

    The Commissioner of Social Security shall revise the regulations 
prescribed by the Commissioner set forth as appendix 1 to subpart P of 
part 404 of title 20 of the Code of Federal Regulations (relating to 
the listing of impairments, published by the Social Security 
Administration as ``Disability Evaluation Under Social Security'', and 
commonly referred to as the ``Blue Book''), as follows:
            (1) The Commissioner shall insert after 11.00G the 
        following:
``H. Huntington's Disease. Huntington's Disease is an inherited 
neuropsychiatric disorder that is progressive and terminates in death 
of the affected person. Recovery or remission never occurs. Treatment 
is ineffective in terms of halting or slowing the progression of the 
disease. The usual age of adult onset is between the ages of 30 and 50, 
although the age of adult onset may be younger or older. Incapacitation 
occurs relatively early in the course of this debilitating illness with 
progression to total disability and dependency for all activities of 
daily living. There are three characteristic clinical features: (1) 
loss of ability to control bodily movements; (2) loss of ability to 
think and act quickly, to learn new material and to remember, and (3) 
apathy, personality changes, irritability, mood swings, depression, 
anxiety, inability to concentrate, decreased motivation, obsessive-
compulsive disorder, and severe depression. Individuals with 
Huntington's Disease also exhibit poor social judgment and may be 
irritable and aggressive. Inability to work is due to a combination of 
cognitive disturbance, behavioral or mood changes, poor coordination of 
voluntary movements, and the presence of involuntary movements. 
Individuals with Huntington's Disease, even in the relatively early 
stages, have particular difficulty with decision-making, multi-tasking, 
and performing under time pressure or with the stress of interpersonal 
interactions. The course of the disease varies among individuals and 
families. The cognitive and behavioral problems may become debilitating 
before disorganization of motor functions. For other individuals, the 
motor dysfunction may appear first.''.
            (2) The Commissioner shall insert after 11.14 the 
        following:
``11.15 Huntington's Disease. With:
            ``A. disorganization of motor function as described in 
        11.04B; or
            ``B. chronic brain syndrome. Evaluate under 12.02, 12.04, 
        and 12.06.''.
            (3) The Commissioner shall remove the reference in 11.17 to 
        ``Huntington's Chorea''.

SEC. 4. REVISION OF THE MEDICAL CRITERIA FOR EVALUATING DISABILITY 
              CAUSED BY JUVENILE HUNTINGTON'S DISEASE.

    The Commissioner of Social Security shall revise further the 
regulations described in section 3 as follows:
            (1) The Commissioner shall insert after 111.00E the 
        following:
``F. Juvenile Huntington's Disease. While there is no symptom or group 
of symptoms that are absolutely required for the diagnosis of juvenile 
Huntington's Disease, most affected children offer several of the 
following features at the time that the diagnosis is made: motor 
dysfunction, characterized by rigidity and dystonia, seizures, 
declining cognitive function, behavioral or psychiatric problems such 
as depression, aggressiveness and impulsiveness, irritability, mood 
swings, and obsessions. Huntington's Disease is a hereditary disorder 
and individuals with very early onset of Huntington's Disease are far 
more likely to have an affected father than an affected mother.''.
            (2) The Commissioner shall insert after 111.09 the 
        following:
``111.10. Junvenile Huntington's Disease. With:
            ``A. Motor dysfunction. Evaluate under 111.06; or
            ``B. Behavioral or psychiatric problems. Evaluate under 
        112.02, 112.06, and 112.08.''.

SEC. 5. ELIMINATION OF 24-MONTH MEDICARE DISABILITY WAITING PERIOD IN 
              CASES OF INDIVIDUALS WITH DISABLING HUNTINGTON'S DISEASE.

    (a) In General.--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'' after ``amyotrophic lateral 
sclerosis (ALS)''.
    (b) Effective Date.--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.
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