Huntington’s Disease Parity Act of 2019

II 116TH CONGRESS 1ST SESSION S. 1476 To waive the 24-month waiting period for Medicare eligibility for individuals disabled by Huntington’s disease. IN THE SENATE OF THE UNITED STATES MAY 15, 2019 Mrs. GILLIBRAND (for herself and Mr. CASSIDY) introduced the following bill; which was read twice and referred to the Committee on Finance A BILL 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 Representa- 1 tives of the United States of America in Congress assembled, 2 SECTION 1. SHORT TITLE. 3 This Act may be cited as the ‘‘Huntington’s Disease 4 Parity Act of 2019’’. 5 SEC. 2. FINDINGS. 6 Congress makes the following findings: 7 (1) Huntington’s disease is a progressive degen- 8 erative neurological disease that causes total phys- 9 ical and mental deterioration. In the United States, 10 VerDate Sep 11 2014 02:22 May 25, 2019 Jkt 089200 PO 00000 Frm 00001 Fmt 6652 Sfmt 6201 E:\BILLS\S1476.IS S1476 kjohnson on DSK79L0C42 with BILLS 2 •S 1476 IS approximately 30,000 individuals are affected by 1 Huntington’s disease, along with another 200,000 2 individuals who are genetically ‘‘at risk’’. There is no 3 effective treatment in terms of halting or slowing the 4 progression of the disease. 5 (2) Clinical indicators of Huntington’s disease 6 include— 7 (A) loss of ability to control bodily move- 8 ments; 9 (B) loss of ability to think or act quickly, 10 inability to learn new material, and loss of 11 memory; and 12 (C) behavioral or psychological problems, 13 including personality changes, irritability, mood 14 swings, anxiety, obsessive-compulsive behavior, 15 inability to concentrate, decreased motivation, 16 and severe depression. 17 (3) Adult-onset Huntington’s disease typically 18 results in the development of symptoms in individ- 19 uals between 30 and 50 years of age. Late-onset 20 Huntington’s disease is characterized by develop- 21 ment of symptoms after 50 years of age and is usu- 22 ally associated with a milder course of the disease. 23 Juvenile Huntington’s disease affects individuals 24 VerDate Sep 11 2014 02:22 May 25, 2019 Jkt 089200 PO 00000 Frm 00002 Fmt 6652 Sfmt 6201 E:\BILLS\S1476.IS S1476 kjohnson on DSK79L0C42 with BILLS 3 •S 1476 IS who have yet to attain 19 years of age and pro- 1 gresses at a more rapid rate. 2 (4) Because of the incapacitating nature of 3 Huntington’s disease, individuals living with this ill- 4 ness, including those in the early stages of the dis- 5 ease, are unable to retain employment. As a result, 6 many such individuals rely solely on Social Security 7 Disability Insurance. 8 (5) After qualifying for Social Security Dis- 9 ability Insurance, individuals with Huntington’s dis- 10 ease must wait another 24 months before receiving 11 benefits under the Medicare program, despite the 12 fact that such individuals often become incapacitated 13 before reaching the age-eligibility requirement under 14 the Medicare program of 65 years of age. 15 (6) In 2000, the Centers for Medicare & Med- 16 icaid Services waived the 24-month waiting period 17 requirement for people disabled by amyotrophic lat- 18 eral sclerosis (‘‘ALS’’), a degenerative neurological 19 condition that is similar to Huntington’s disease. 20 (7) In light of the significant cognitive, behav- 21 ioral, and physical incapacitation faced by individ- 22 uals with this disease, there is an urgent need for 23 the removal of the 24-month waiting period for cov- 24 erage under the Medicare program for such individ- 25 VerDate Sep 11 2014 02:22 May 25, 2019 Jkt 089200 PO 00000 Frm 00003 Fmt 6652 Sfmt 6201 E:\BILLS\S1476.IS S1476 kjohnson on DSK79L0C42 with BILLS 4 •S 1476 IS uals, similar to the existing exemption for individ- 1 uals who have been diagnosed with ALS. 2 SEC. 3. WAIVER OF 24-MONTH WAITING PERIOD FOR COV- 3 ERAGE UNDER MEDICARE PROGRAM FOR IN- 4 DIVIDUALS DIAGNOSED WITH HUNTINGTON’S 5 DISEASE. 6 (a) IN GENERAL.—Section 226(h) of the Social Secu- 7 rity Act (42 U.S.C. 426(h)) is amended, in the matter pre- 8 ceding paragraph (1), by inserting ‘‘or Huntington’s dis- 9 ease (HD)’’ after ‘‘amyotrophic lateral sclerosis (ALS)’’. 10 (b) EFFECTIVE DATE.—The amendment made by 11 subsection (a) shall apply to benefits under title XVIII of 12 the Social Security Act with respect to items and services 13 furnished in months beginning after the date of the enact- 14 ment of this Act. 15 Æ VerDate Sep 11 2014 02:22 May 25, 2019 Jkt 089200 PO 00000 Frm 00004 Fmt 6652 Sfmt 6301 E:\BILLS\S1476.IS S1476 kjohnson on DSK79L0C42 with BILLS