Pushing to Remove Tax Burden of Clinical Trial Participation
A goal shared by many is increasing participation and diversity in clinical trials so that all Americans can benefit from medial research. Cost is one barrier to participation. Payments for clinical trials can be considered taxable income, but there is a bipartisan effort in Congress to change that. Legislative Director for Rep. Mike Kelly (R-PA-16), Quinn Ritchie, recently joined us for an alliance discussion on H.R. 7418, the Harley Jacobsen Clinical Trial Participant Income Exemption Act. The bipartisan bill, introduced by Reps. Kelly and Chrissy Houlahan (D-PA-6), is designed to reduce the financial burden on Americans participating in clinical trials. The bill exempts trial payments from taxes to reduce overall costs. The following excerpts were taken from his discussion:
The Genesis of the Bill:
Ritchie said the office was approached by Mural Health, a clinical trial management company in Pennsylvania. Mural Health approached the office about an ALS patient, Harley Jacobsen, whose family faced financial hardships while participating in clinical trials. “We were presented with an idea around increasing access to those participating in these clinical trials, making it easier for them and their families to take on the financial burden and try to increase diversity within [clinical trials],” he said.
Supporting Vulnerable Patients:
Patients who take part in clinical trials are often our most vulnerable, sickest patients, he said. “I think the focus here in Congress is on the patient,” he said. “So, trying to better that patient experience, specifically for these vulnerable communities, trying to make the financial burden a little lighter on them as they try and navigate the health care system and these clinical trial systems.”
Additional Burdens:
Rep. Kelly represents a rural district in northwestern Pennsylvania, so transportation to a clinical trial site is an issue, Ritchie said. There needs to be more site locations so patients can receive this care. There is a need to include different segments of our population to increase net diversity in clinical trial participation, he said. “Increasing the net diversity is going to be key to really getting the answer in these trials.”