Join our effort to increase diversity in clinical trials.

The Problem

Clinical trials do not test therapies on patient populations that reflect the diversity of the people that those therapies serve. In this way, the drug development process is flawed and can only be truly effective for a portion of the population represented in clinical research.

The Barrier We Are Addressing

Existing U.S. tax rules, unintentionally, prevent more than 90 million Americans from participating in clinical trials (~27% of the U.S. population). Many of these people represent communities that are grossly underrepresented in clinical research.

Payments made to participants are considered income and must be reported to the IRS, which threatens to disqualify patients from receiving critical benefits from a social welfare program (Medicaid, SNAP, etc). This prevents low-income participants from enrolling in or completing a trial.

Our Proposed Solution

We want to make payments to clinical trial participants tax-free, and eliminate associated reporting requirements in order to:

  • Remove a barrier preventing 90 million Americans from participating in research & gaining access to potentially life-saving experimental therapies
  • Improve the effectiveness of the drug development process, so new therapies are effective for all of the people that they will serve post-approval
(Names will not be shared publicly)
“Nine years ago, I was given 16 months to live. I am still alive and have no evidence of disease because of my access to clinical trials. But it cost me well over $35,000 in travel and lodging expenses over the years, which my family helped pay for so I could participate. What would have happened if they couldn’t?”
- Katie Ortman Doble 

Stage 4 Cancer Survivor & Patient Advocate

Why sign the letter?

Patients and caregivers often receive payment for the reimbursement of expenses and milestone-related stipends, designed to help manage lost wages and other trial-related hardships. But for the millions of Americans on public assistance, reportable income may threaten their eligibility for programs such as SNAP (food stamps) and Medicaid. This deters them from participating in trials.

Excluding these communities from participation negatively affects a wide array of stakeholders, including the critically ill, prospective trial participants, small and large businesses, and the general American public. The IRS regulations unintentionally create a barrier to participation that is in direct opposition to the FDA’s effort to diversify enrollment in clinical trials, which is, as they’ve stated, ‘fundamental to public health.”

Sign Your Support

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