April 6, 2011 >> back to issue

New Clinical Trials Law to Benefit Rare Disease Communities

Thanks to your calls and emails, and the advocacy of other rare disease groups, the Improving Access to Clinical Trials Act (IACT) went into effect on April 4. The IACT enables patients with rare diseases to enroll in compensated clinical trials without that compensation counting against their Social Security Income (SSI) or Medicaid eligibility income caps.

The IACT permits these SSI and Medicaid beneficiaries to accept up to $2,000 per year in compensation for participating in a clinical drug trial without losing their federal benefits. These changes allow more patients to participate in research trials that may someday lead to new treatment and eventually a cure for diseases such as PH.

Get the details about SSI benefits | Read more about the implications of the law




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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.