Sam Whitaker, Mural Health’s founder and CEO, has dedicated his professional life to clinical research, previously building the first technology solution for payments to trial participants. In 2016, this professional journey became extremely personal: Sam’s close friend, Harley Jacobsen, was diagnosed with ALS.  This was the beginning of an emotionally draining, and very expensive, journey for Harley’s wife, Maureen, and 2 children.  

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The only option to buy Harley more time with his family was to join a clinical trial, but it was quickly evident that the expenses were tremendous -  the costs of traveling, lodging, and child care cost nearly $20,000. The trial sponsor covered a fraction of these costs, but those payments were considered income, and therefore, they were taxed, chipping away at the minimal financial support the Jacobsens received. 

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This isn’t just Harley’s story. 80% of Americans cannot independently afford to participate in a trial.  Approximately 1/3 of Americans – the ~110M individuals who are eligible for welfare benefits – cannot participate in a trial if it structures its trial-related financial support as income, as this structure threatens to disqualify them from social welfare programs. 

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Enter The Harley Jacobsen Act (H.R. 7418), initiated by Mural Health and introduced to Congress in 2024, 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: regardless of how they are structured. 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: recognizing caregivers as part of the participating unit. Because every sick child, elderly patient, or disabled individual deserves to participate in a trial with the support of their caregiver.
• All clinical trials: regardless of therapeutic area.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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In our short video, Sam details his transition from caregiver to advocate for the Jacobsens and millions of others who struggle to participate in clinical trials.  Most importantly, he highlights one key way that YOU can use your voice - by visiting www.diversity.muralhealth.com and signing your support for the Harley Jacobsen Act.

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