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
To waive the 24-month waiting period for Medicare eligibility for individuals disabled by Huntington’s disease.
This Act may be cited as the
Huntington’s Disease Parity Act of 2019.
Congress makes the following findings:
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.
Clinical indicators of Huntington’s disease include—
loss of ability to control bodily movements;
loss of ability to think or act quickly, inability to learn new material, and loss of memory; and
behavioral or psychological problems, including personality changes, irritability, mood swings, anxiety, obsessive-compulsive behavior, inability to concentrate, decreased motivation, and severe depression.
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.
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.
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.
In 2000, the Centers for Medicare & Medicaid 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.
In light of the significant cognitive, behavioral, and physical incapacitation faced by individuals with this disease, there is an urgent need for the 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.
Waiver of 24-month waiting period for coverage under medicare program for individuals diagnosed with Huntington’s disease
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).
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.