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Three US representatives in particular have been very supportive...

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    Three US representatives in particular have been very supportive of Huntington's disease legislation and orphan drugs.  Another poster suggested that some contact with government officials might be helpful-

    H.R.3678 — 114th Congress (2015-2016)
    Preserving Access to Orphan Drugs Act of 2015
    Sponsor: Rep. Kelly, Mike [R-PA-3] (Introduced 10/01/2015)
    Committees: House - Ways and Means, Energy and Commerce
    Latest Action: 10/01/2015 Referred to House Energy and Commerce (All Actions)
    Thursday, February 12, 2015

    Kinzinger introduces legislation providing Social Security, Medicare for Huntington's Disease victims


    Singer Woody Guthrie died at age 55 from Huntington’s disease complications
    WASHINGTON DC – Wednesday, Congressmen Adam Kinzinger (R-IL) and Bill Pascrell (D-NJ) reintroduced H.R. 842, the Huntington’s Disease Parity Act, bipartisan legislation which would ensure that Social Security and Medicare are available to people with Huntington’s Disease (HD). With bipartisan support from over 100 cosponsors, it is clear that H.R. 842 is critical to tens of thousands of people across the United States battling this rare, fatal, hereditary disease, as well as their families who care for them.

    "The Huntington’s Disease Parity Act is instrumental to providing necessary medical access for those impacted by Huntington’s Disease,” said Congressman Kinzinger. “This bipartisan legislation is a targeted solution that will fix an outdated system for a very vulnerable group of people.”

    “Huntington’s disease profoundly affects the lives of entire families – emotionally, socially and financially,” said Congressman Pascrell.  “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.”

    “The entire HD community is thankful for the leadership of Congressmen Kinzinger and Pascrell, and for the continued support of all of our original cosponsors" said Louise Vetter, CEO of the Huntington's Disease Society of America. “The reintroduction of the HD Parity Act with such overwhelming bipartisan support gives our families great hope that Congress will finally act to force a revision of the medically inaccurate Social Security Disability guidelines for HD and waive the two-year Medicare waiting period for individuals disabled by HD. These simple changes will ensure that our families will finally have access to the timely care and resources necessary to fight this terrible disease.”

    The disease affects 35,000-50,000 Americans, with 175,000-250,000 more people at risk.
    Victims suffer from uncontrolled body movements, known as “chorea,” which eventually leave them unable to walk, stand or even speak intelligibly. The disease also causes cognitive difficulty, memory problems, severe depression and, after 15-20 years, death.

    Symptoms usually begin to appear in early to mid-adulthood, but can strike as early as 2 years of age or as late as 80 years. There is no cure or treatment for the disease, but carriers of the faulty gene can now be identified by genetic testing, the Hereditary Disease Foundation says.

    Chuck Rangel put a comment up on the FDA patient advisory website and these are the co-sponsors of H.R.3678 — 114th Congress (2015-2016), Preserving Access to Orphan Drugs Act of 2015
    Cosponsor Date Cosponsored
    Rep. Black, Diane [R-TN-6]* 10/01/2015
    Rep. Neal, Richard E. [D-MA-1]* 10/01/2015
    Rep. Holding, George [R-NC-13]* 10/01/2015
    Rep. Rangel, Charles B. [D-NY-13]* 10/01/2015
    Rep. Jenkins, Lynn [R-KS-2]* 10/01/2015
    Rep. Tiberi, Patrick J. [R-OH-12]* 10/01/2015
    Rep. Marchant, Kenny [R-TX-24]* 10/01/2015
    Rep. Nunes, Devin [R-CA-22]* 10/01/2015
    Rep. Pompeo, Mike [R-KS-4] 10/06/2015
    Rep. Kinzinger, Adam [R-IL-16] 10/06/2015
 
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