Solve M.E. Advocacy Changing the Face and Funding of Clinical Trials

Lowering the costs and barriers for participation in clinical trials is a key priority for Solve M.E.  For the past three years, Solve M.E. has endorsed and advocated for the passage of H.R. 913, The Clinical Treatment Act. Initially introduced in 2019 by Representatives Ben Ray Lujan (D-NM-03) and Gus Bilirakis (R-FL-12), this new law guarantees coverage of the routine care costs of clinical trial participation (like lab tests or doctor visits) for Medicaid enrollees.

The whirlwind end-of-year Fiscal Year 2021 legislative package brought us big wins for ME/CFS. In that time, a quiet revolution in participation and funding in clinical trials took place, and now we’re starting to see results!

Signed into law on Dec 27, 2020, these new provisions make it easier for 41.6 million Medicaid beneficiaries to participate in clinical trials. As a result, Medicaid will pay for the routine clinical trial costs for specified Medicaid participants, including patients who suffer from myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS.

This important policy change will reduce the overall cost of ME/CFS clinical trials and we hope this new law will facilitate more ME/CFS clinical trials. With these new laws in place, ME/CFS clinical trials will have additional resources and be less expensive to execute. Most importantly, these provisions will help address racial and income disparities in clinical trial participants.

If you are a Medicaid beneficiary with ME/CFS, please consider joining the You + ME registry and downloading the mobile app to receive push notifications on your phone for clinical trials that might be right for you.