Huntington's Disease Parity Act of 2015 (HR 842/S 968, 114th Congress)

The Policy

What it does

Updates Social Security guidelines for Huntington’s disease.

Synopsis

H.R. 842 / S 968 seeks to update how Social Security views disability claims for Huntington’s disease (HD).

  • Updates the medical evaluation criteria for individuals applying for Social Security Disability for Huntington’s disease, and makes patients eligible for benefits earlier in their disease progression.
  • Currently individuals who are deemed eligible for disability benefits must wait two years before receiving Medicare benefits. The current bill would waive that waiting period.

Context

The Science

Science Synopsis

Huntington’s disease (HD)

  • Fatal, heritable, neurodegenerative disorder.
  • Affects muscle coordination/movement with coinciding cognitive and behavioral disruptions.
  • Prevalence in the U.S. is estimated to be 15,000 - 30,000.
  • Social Security Disability Insurance (SSD or SSDI) guidelines specifically evaluate HD as dependent on chorea, the uncontrollable writhing movements that characterize the motor disability of the disease.
  • Disease is inexorable, typically progressing over a period of years with no effective treatments.

The Debate

Endorsements & Opposition

In the 2001 Congress passed a similar bill, the Consolidated Appropriations Act,  that incorporated the Medicare, Medicaid, and SCHIP Benefits Improvement and Protection Act of 2000 (H.R.5661 - see Section 115). This law effectively waived Medicare’s two-year waiting period for individuals diagnosed with amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease.

Endorsements:

  • H.R. 842 has garnered early bipartisan support with 189 cosponsors (119-D/70-R) as of August 9, 2015.
  • The primary sponsor Rep. Adam Kinzinger (R-IL-16) states: “This bipartisan legislation is a targeted solution that will fix an outdated system for a very vulnerable group of people” and original co-sponsor Rep. Bill Pascrell (D-NJ-9) adds: “This legislation takes the critical step of shortening the wait for Social Security and improving access to Medicare coverage for individuals with HD in order to get those suffering from this devastating disease the care they need.”
  • Supporters led by the Huntington’s Disease Society of America state that many HD patients suffer from debilitating cognitive and behavioral effects at least a decade before chorea symptoms manifest. These impediments often lead to loss of employment and employer-provided benefits, which is addressed by the current bill.

Opposition:

  • There have not been any public statements opposing the bill.