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Politics is weird, but it might be good for long COVID(?!)
Our political climate is weird right now, but we may be able to leverage it to improve long COVID research. The current Department of Health and Human Services (HHS) has de-emphasized infectious disease and vaccinations, but at the same time is interested in infection-associate chronic conditions (IACC), particularly chronic lyme disease and long COVID.
How can we keep federal attention—and research funds—on long COVID? My guest Heather Stone joined me to explain two tangible ways: CURE-ID and the recent Federal Register for drug repurposing.
Heather Stone leads CURE-ID
Heather Stone is a health policy analyst at the FDA, and leads the CURE-ID platform. She’s a remarkable scientist with chronic complex disease herself. She has benefitted tremendously by using repurposed drugs for her own health conditions, and that’s part of what motivated her to join (and help build) CURE-ID.
Read more about Heather’s remarkable story, her badass mom Dr Judy Stone, and how Heather helped save a young child’s life here.
CURE-ID is a federal database of repurposed drugs—and it influences research
CURE-ID is a database of repurposed drugs, a collaboration between the FDA and NCATS, the National Center for Advancing Translational Science.
On CURE-ID, patients, caregivers and clinicians can do two things:
Search the database for treatments that have been used for conditions without reliable and established treatments: long COVID, Lyme, certain cancers, and rare genetic conditions.
Submit your experience with off-label treatments
CURE-ID is remarkable for several reasons:
Data is shared. Identities are always protected, but you (yes, you) can review and search treatments and reported outcomes
Data is analyzed. Heather and her team, including epidemiologists and statisticians, detect patterns in reported treatments.
Data influences federal research. But only if enough cases are submitted
Sharing your experience makes a MAJOR difference
We need more long COVID cases submitted to CURE-ID. Heather’s team has already noticed very important patterns in the data, but there are simply not enough data points to act on.
Right now, long COVID has the attention of people in very high-level positions in Washington. By submitting your treatment experience, we have a better chance of keeping funding and attention on us.
Heather and I demonstrate how to submit a case to CURE-ID on the livestream. For assistance, contact the support team dedicated to help, or email Heather directly at Heather.Stone@fda.hhs.gov
Tell HHS to focus on long COVID by Thursday
The second urgent topic is the recent Federal Register. A federal register is an invitation to direct government focus.
Recently a register was opened to the public from the FDA titled: Drug Repurposing for Unmet Medical Needs; Request for Information
Submit your comments by Thursday June 11. It only takes a couple of sentences to say, “We need long COVID funding and research. Please directs funds to identify new and repurposed drugs to treat and cure this chronic disease.”
Heather and I also walked through the register in the livestream.
Together, we can do big things. At least we can try.
Submit your comments to the Federal Register on Repurposed Drugs for Unmet Medical Needs
Submit your experience with long COVID treatment to CURE-ID
Watch the livestream for more details
Let me know what you think
—Dr Zeest Khan
