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Jul. 17, 2015

TOPIC: Advocacy

Ensuring Access to Clinical Trials Act of 2015 Passes in the U.S. Senate

Posted by Jennifer Huron

CapitolA win for the rare disease community

Yesterday, the U.S. Senate passed the Ensuring Access to Clinical Trials Act of 2015 (S 139), which NORD has supported.  The bill would make permanent the Improving Access to Clinical Trials Act of 2009 (IACT). Without Congressional action, it is scheduled to expire in October 2015.  The law has helped to remove barriers for patients to participate in clinical trials – a critical issue for the rare disease community, as the majority of rare diseases still have no treatment.

The legislation has enabled those with rare diseases to receive compensation up to $2,000 for participating in clinical trials without having this compensation be counted as income when calculating eligibility for Supplemental Security Income (SSI) and Medicaid.

Because of IACT, patients receiving federal assistance do not have to choose between access to health care benefits and participating in clinical trials for much-needed treatments. Previously, some people with rare diseases who received SSI and Medicaid could not participate in clinical research for fear that the compensation received would make them ineligible to receive government medical benefits, harming enrollment in clinical trials for potential treatments.

Next up – the Ensuring Access to Clinical Trials Act will need to pass in the House – stay tuned for how we can all work together and you can help make this happen!

4 Responses to “Ensuring Access to Clinical Trials Act of 2015 Passes in the U.S. Senate”

  1. Dane L Perry says:

    After hip replacement I started feeling like I had the flu body aches…10 years . Back pain so bad had MRI done , TC S2 . Can only bend over 1.5 inch’s. Bowel problems. And the Ringing in my ears is driving me INSANE! I’ll try any trial you have! Even if it involves a butter knife!
    Excuse the whining. Thank you, Dane

  2. Mary says:

    Ihave Tarlov cyst S2 .I had fusion surgery 2 years ago Aug 2014.Ever since the surgery I’ve had horrible pain in my tailbone and both hips. Was on nucynta100 mg 5 times a day ,became allergic. Have been on norco 10 four times a day.Also take lorasapamand ropinerolfor Rls and preiodic limb movement arms and legs.please contact me I don’t know how much longer I can stand this pain .16939 84thave Tinley Park Illinois 60477. 7086331572

  3. LeAnn McLean says:

    Being from Canada I have limited access to Drs who have any knowledge of Tarlof cysts. I was diagnosed five years ago with the cysts but have not found anyone who can help me alleviate the pain. Can Canadians become part of clinical trials is the USA?
    Thank you.

    • Christina Jensen says:


      Thank you for writing. That is dependent upon the study sponsor and the study design. There are certainly challenges for out of country participants, such as health insurance coverage while participating, visas/passports, and travel and lodging costs, etc. We recommend that you look further into the study that you are interested in and inquire if Canadians are eligible to partake.

      Warmest Regards,

      Christi Jensen-Marketing Coordinator at NORD