How the Patient Voice Has Impacted the Tick-Borne Disease Working Group Patients are coming together to have an impact and create change in Lyme disease policy. The patient voice has a powerful impact on the future of Lyme.

By Phyllis Mervine

B ack in January, several of us at took the plunge and volunteered to serve on subcommittees of the Tick-Borne Disease Working Group, which was established by Congress as part of the 21st Century Cures Act. I personally put together my first résumé in decades and filled out the requisite paperwork. We also encouraged a number of other people we knew would support patient interests to apply for subcommittees. A month later, with a newly appointed Health and Human Services (HHS) secretary, we were notified that we had made the cut. Shortly after that, the real work began—with weekly conference calls, drafts, discussions, arguments, votes, and rewrites. Oh, yes, and minority reports.

A Seat At The Table – Federal Lyme Disease Program

Patients have a lot riding on the success of this effort. It’s the first time we’ve had a seat at the table as the federal Lyme disease program is being discussed. We’ve already had positive examples of what can happen when enough patients get involved with government—doctor protection laws and mandatory insurance coverage are just two examples. This time the task is broader:

The Working Group will provide expertise and review all efforts within the Department of Health and Human Services related to all tick-borne diseases, to help ensure interagency coordination and minimize overlap, and to examine research priorities.

When we started, the program was already a full year into its two-year process, meaning deadlines would loom with alarming frequency. We had a huge amount of work to do in a short time. There was a learning curve just for the elaborate HHS-defined process of proposals and voting…….. Join or login below to continue reading.

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