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Jul. 14, 2016

TOPIC: Advocacy

NORD Issues Statement as Senate Postpones Vote on Cures Legislation

Posted by Jennifer Huron

The following statement was issued by Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD), as the Senate announced it would not vote on its Cures legislation, also known as the Senate Innovations for Healthier Americans Initiative, until September at the very earliest.

“On behalf of the 1 in 10 Americans with rare diseases, most of whom are still waiting for a treatment or cure, we are disappointed that Senate Cures was not able to pass at this point.  We will keep pushing for this legislation through the summer recess and into September to ensure the voices of patients and families are heard.

Many people with rare diseases are in a race against time.  There are 7,000 rare diseases and 95 percent of these have no treatment.  This public health issue encompasses cancer—approximately half of people with cancer are battling a rare cancer—and neurological, metabolic, digestive, blood and other disorders that are present across the medical spectrum.  

This vital package includes billions of dollars to spur medical innovation that would help the rare disease community, including new funding for critical research at the National Institutes of Health (NIH) and to accelerate drug approval at the Food & Drug Administration (FDA), and other provisions such as the OPEN ACT and Vice President Biden’s Cancer Moonshot, with the potential to stop rare diseases from altering and ending the lives of too many Americans far too soon. Most pressing is the reauthorization of the Rare Pediatric Disease Priority Review Voucher program currently set to expire at the end of September.”

Peter L. Saltonstall
President and CEO, National Organization for Rare Disorders (NORD)

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5 Responses to “NORD Issues Statement as Senate Postpones Vote on Cures Legislation”

  1. Christy Brom says:

    CJD Aware! has been monitoring this vital legislation for a long time, here’s hoping it will finally cross the finish-line in September! We thank NORD and all Congressmen and Senators for their VERY hard work on this bill.

  2. Christy Brom says:

    CJD Aware! has been monitoring this vital piece of legislation since 2011. We thank all the Congressmen and Senators for voting for it and getting it to this phase, here’s hoping in September the bill will cross the finish line so that President Obama will sign it into law!

  3. RICHARD A. GATTI, M.D. says:

    Because providing clinical diagnostic testing for RARE DISEASES by nature involves small volume testing, we would like to explore legislation that would partially support these tests in non-profit laboratories with expertise is RARE DISEASE testing. We have run such a laboratory at UCLA for almost 20 years for DNA Repair Disorders and Radiosensitivity and experience has taught us that 1) the small volumes stunt further improvement of esoteric tests, 2) the amount of support required to bridge the gaps is not very great if the goal is simply to recover costs, and 3) such laboratories are rapidly dwindling as CPT codes and CLIA standards increase and billing and marketing costs soar, leaving some rare diseases with no clinical diagnostic testing in a commercial laboratory.

  4. Theresa Slayton says:

    Thank you for all of efforts on behave of us rare people.

  5. Maureen Genuardi says:

    Who sponsored this bill? Is it a rub against Mr. Biden? Hate the political footballs
    thos e unfortunate enough to have rare disorders and terminal illness are subjected to within our country. Shame on the Congress.