I 113th CONGRESS 1st Session H. R. 1015 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.

1. Short title This Act may be cited as the Huntington’s Disease Parity Act of 2013 . 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. 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. 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.