[Congressional Bills 113th Congress]
[From the U.S. Government Publishing Office]
[H.R. 1015 Introduced in House (IH)]

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 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 
2013''.

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. In the United States, approximately 30,000 
        individuals are affected 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 movements;
                    (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 individuals between 30 and 50 
        years of age. Late-onset Huntington's Disease is characterized 
        by development of symptoms after 50 years of age and is usually 
        associated with a milder course of the disease. Juvenile 
        Huntington's Disease affects individuals who have yet to attain 
        19 years of age and progresses at a more rapid rate.
            (4) Because of the incapacitating nature of Huntington's 
        Disease, individuals living with this illness, including those 
        in the early stages of the disease, 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 Disease, 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 Security 
        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 incomplete characterization of the full 
        spectrum of Huntington's Disease for purposes of Social 
        Security Disability Insurance and the Medicare program.
            (6) After qualifying for Social Security Disability 
        Insurance, individuals with Huntington's Disease 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 & Medicare Services 
        waived the 24-month waiting period requirement for people 
        disabled by amyotrophic lateral sclerosis (``ALS''), a 
        degenerative neurological condition that is similar to 
        Huntington's Disease.
            (8) In light of the outdated Social Security Disability 
        Insurance guidelines for Huntington's Disease 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.

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

    (a) In General.--For purposes of determinations of cognitive, 
behavioral, and physical disability under titles II and XVI of the 
Social Security Act, the Commissioner of Social Security, in 
consultation with the National Institute of Neurological Disorders and 
Stroke, the National Institutes of Health, and other relevant 
organizations with medical expertise relating to Adult-Onset and 
Juvenile Huntington's Disease, shall, not later than 180 days after the 
date of the enactment of this Act--
            (1) amend section 11.00 of part A of the Listing of 
        Impairments (relating to neurological impairments of adults) 
        by--
                    (A) providing medical and evaluation criteria for 
                Huntington's Disease; and
                    (B) striking ``Huntington's Chorea'' each place it 
                appears;
            (2) amend section 12.00 of part A of the Listing of 
        Impairments (relating to mental disorders of adults) by 
        providing medical and evaluation criteria for Huntington's 
        Disease;
            (3) amend section 111.00 of part B of the Listing of 
        Impairments (relating to neurological impairments of children) 
        by providing medical and evaluation criteria for Juvenile 
        Huntington's Disease; and
            (4) amend section 112.00 of part B of the Listing of 
        Impairments (relating to mental disorders of children) by 
        providing medical and evaluation criteria for Juvenile 
        Huntington's Disease.
    (b) Listing of Impairments.--For purposes of this section, the term 
``Listing of Impairments'' means appendix 1 to subpart P of part 404 of 
title 20 of the Code of Federal Regulations.

SEC. 4. WAIVER OF 24-MONTH WAITING PERIOD FOR COVERAGE UNDER MEDICARE 
              PROGRAM FOR INDIVIDUALS DIAGNOSED WITH 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 (HD)'' 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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