Huntington’s Disease Parity Act of 2019

I 116TH CONGRESS 1ST SESSION H. R. 2770 To waive the 24-month waiting period for Medicare eligibility for individuals disabled by Huntington’s disease. IN THE HOUSE OF REPRESENTATIVES MAY 15, 2019 Mr. PASCRELL (for himself, Mr. KINZINGER, Mr. LIPINSKI, Mr. SCHIFF, Ms. NORTON, Mr. COHEN, Ms. WASSERMAN SCHULTZ, Mr. LANGEVIN, Mr. PETERS, Mr. TONKO, Mr. FITZPATRICK, Ms. MCCOLLUM, Mrs. BEATTY, Mr. MASSIE, Mr. THOMPSON of Mississippi, Mr. MOULTON, Ms. DELBENE, Mr. FOSTER, Ms. CLARKE of New York, Mr. CICILLINE, Miss RICE of New York, Mr. YOUNG, Mr. KING of Iowa, Ms. BONAMICI, Mr. DEFAZIO, Mr. KILMER, Ms. DELAURO, Mr. HASTINGS, Mr. SERRANO, Mr. CONNOLLY, Mr. CLAY, Mr. DEUTCH, Mr. PRICE of North Carolina, Mr. ROGERS of Kentucky, Mr. WILSON of South Carolina, Mr. RODNEY DAVIS of Illinois, Mr. GOLDEN, Mr. MEEKS, Mr. MCGOVERN, Mr. GRI- JALVA, Ms. PINGREE, Mr. KING of New York, Mr. HUNTER, Mr. GARAMENDI, Mr. COOPER, Ms. KAPTUR, Mr. AGUILAR, Mr. SMITH of New Jersey, Ms. HERRERA BEUTLER, Ms. KUSTER of New Hampshire, Mr. ZELDIN, Mrs. RADEWAGEN, Mr. HILL of Arkansas, Mr. POCAN, Mr. BEYER, and Mr. COOK) introduced the following bill; which was referred to the Committee on Ways and Means 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 VerDate Sep 11 2014 02:25 May 29, 2019 Jkt 089200 PO 00000 Frm 00001 Fmt 6652 Sfmt 6201 E:\BILLS\H2770.IH H2770 kjohnson on DSK79L0C42 with BILLS 2 •HR 2770 IH SECTION 1. SHORT TITLE. 1 This Act may be cited as the ‘‘Huntington’s Disease 2 Parity Act of 2019’’. 3 SEC. 2. FINDINGS. 4 Congress makes the following findings: 5 (1) Huntington’s disease is a progressive degen- 6 erative neurological disease that causes total phys- 7 ical and mental deterioration. In the United States, 8 approximately 30,000 individuals are affected by 9 Huntington’s disease, along with another 200,000 10 individuals who are genetically ‘‘at risk’’. There is no 11 effective treatment in terms of halting or slowing the 12 progression of the disease. 13 (2) Clinical indicators of Huntington’s disease 14 include— 15 (A) loss of ability to control bodily move- 16 ments; 17 (B) loss of ability to think or act quickly, 18 inability to learn new material, and loss of 19 memory; and 20 (C) behavioral or psychological problems, 21 including personality changes, irritability, mood 22 swings, anxiety, obsessive-compulsive behavior, 23 inability to concentrate, decreased motivation, 24 and severe depression. 25 VerDate Sep 11 2014 02:25 May 29, 2019 Jkt 089200 PO 00000 Frm 00002 Fmt 6652 Sfmt 6201 E:\BILLS\H2770.IH H2770 kjohnson on DSK79L0C42 with BILLS 3 •HR 2770 IH (3) Adult-onset Huntington’s disease typically 1 results in the development of symptoms in individ- 2 uals between 30 and 50 years of age. Late-onset 3 Huntington’s disease is characterized by develop- 4 ment of symptoms after 50 years of age and is usu- 5 ally associated with a milder course of the disease. 6 Juvenile Huntington’s disease affects individuals 7 who have yet to attain 19 years of age and pro- 8 gresses at a more rapid rate. 9 (4) Because of the incapacitating nature of 10 Huntington’s disease, individuals living with this ill- 11 ness, including those in the early stages of the dis- 12 ease, are unable to retain employment. As a result, 13 many such individuals rely solely on Social Security 14 Disability Insurance. 15 (5) After qualifying for Social Security Dis- 16 ability Insurance, individuals with Huntington’s dis- 17 ease must wait another 24 months before receiving 18 benefits under the Medicare program, despite the 19 fact that such individuals often become incapacitated 20 before reaching the age-eligibility requirement under 21 the Medicare program of 65 years of age. 22 (6) In 2000, the Centers for Medicare & Med- 23 icaid Services waived the 24-month waiting period 24 requirement for people disabled by amyotrophic lat- 25 VerDate Sep 11 2014 02:25 May 29, 2019 Jkt 089200 PO 00000 Frm 00003 Fmt 6652 Sfmt 6201 E:\BILLS\H2770.IH H2770 kjohnson on DSK79L0C42 with BILLS 4 •HR 2770 IH eral sclerosis (‘‘ALS’’), a degenerative neurological 1 condition that is similar to Huntington’s disease. 2 (7) In light of the significant cognitive, behav- 3 ioral, and physical incapacitation faced by individ- 4 uals with this disease, there is an urgent need for 5 the removal of the 24-month waiting period for cov- 6 erage under the Medicare program for such individ- 7 uals, similar to the existing exemption for individ- 8 uals who have been diagnosed with ALS. 9 SEC. 3. WAIVER OF 24-MONTH WAITING PERIOD FOR COV- 10 ERAGE UNDER MEDICARE PROGRAM FOR IN- 11 DIVIDUALS DIAGNOSED WITH HUNTINGTON’S 12 DISEASE. 13 (a) IN GENERAL.—Section 226(h) of the Social Secu- 14 rity Act (42 U.S.C. 426(h)) is amended, in the matter pre- 15 ceding paragraph (1), by inserting ‘‘or Huntington’s dis- 16 ease (HD)’’ after ‘‘amyotrophic lateral sclerosis (ALS)’’. 17 (b) EFFECTIVE DATE.—The amendment made by 18 subsection (a) shall apply to benefits under title XVIII of 19 the Social Security Act with respect to items and services 20 furnished in months beginning after the date of the enact- 21 ment of this Act. 22 Æ VerDate Sep 11 2014 02:25 May 29, 2019 Jkt 089200 PO 00000 Frm 00004 Fmt 6652 Sfmt 6301 E:\BILLS\H2770.IH H2770 kjohnson on DSK79L0C42 with BILLS