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 100 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

Earlier this year, we introduced The Harley Jacobsen Act (H.R. 7418) to Congress, co-sponsored by PA Congressional leaders Mike Kelley and Chrissy Houlahan. The bill seeks to exclude all payments to all participants in all clinical trials from being treated as taxable income:

  • All payments: Because patients and caregivers deserve to participate in a trial and be compensated fairly, without the fear of losing access to social benefits.
  • All participants. Because every sick child, elderly patient, or disabled individual deserves to participate in a trial with the support of their caregiver.
  • All clinical trials: Because patients suffering from diabetes, Crohn’s disease, MS, and any disease that isn’t classified as life-threatening deserve equal access to trials.
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(Names will not be shared publicly)

The progression of this effort

October 2023
Drafted a letter to Congress
The letter reviews in detail the relevant issues supporting the case for an income exclusion on all participant payments in clinical trials.
November 2023
Publicly announced our effort
We sent the letter to Congress, publicly announced our effort, and circulated the letter to the clinical research ecosystem to spread awareness and garner support.
February 2024
Introduced “The Harley Jacobsen Act” (H.R. 7418)
“The Harley Jacobsen Clinical Trial Participation Income Exemption Act” is a bill co-sponsored by PA Congressional leaders Mike Kelly and Chrissy Houlahan that seeks to exclude all payments to all participants in all clinical trials from being treated as taxable income.
“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
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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.
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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.”
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