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S. 139 (114th): Ensuring Access to Clinical Trials Act of 2015

The text of the bill below is as of Oct 6, 2016 (Passed Congress).

Summary of this bill

There are 30 million Americans living with what S. 139 calls “rare diseases or conditions.” It is difficult enough facing such disorders, but it can be even more difficult finding those willing to participate in clinical trials to provide information, treat and perhaps even cure these conditions. The definition of “rare disease” in the U.S. is “any disease or condition where the prevalence is less than 200,000 patients.” In an interview in pharmaphorum Yaffa Rubenstein, of the Office of Rare Diseases Research (ORDR), explained there are “...more than 6,800 rare diseases known today.”

On September 28, 2015, Congress maintained federal support for the participation of low-income Americans in clinical …

One Hundred Fourteenth Congress of the United States of America

1st Session

S. 139



To permanently allow an exclusion under the Supplemental Security Income program and the Medicaid program for compensation provided to individuals who participate in clinical trials for rare diseases or conditions.


Short title

This Act may be cited as the Ensuring Access to Clinical Trials Act of 2015.


Elimination of sunset provision

Effective as if included in the enactment of the Improving Access to Clinical Trials Act of 2009 (Public Law 111–255, 124 Stat. 2640), section 3 of that Act is amended by striking subsection (e).

Speaker of the House of Representatives

Vice President of the United States and President of the Senate