Help convince Congress to pass a CRUCIAL Bill that would expand medication coverage for patients like us!

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An important bill has just been reintroduced - The PROTECT Rare Act. Passing this bill would change coverage rules for Medicare/Medicaid as well as potentially impacting commercial insurance. It would require that journal articles be validated as proof of efficacy for off-label drugs. Currently Medicare uses dated, discriminatory compendia to deny drugs en masse for patients with rare, or poorly studied illnesses like ours.

I started a petition to drum up awareness of this important issue:

Sign the Petition

Pass the PROTECT Rare Act of 2023!

www.change.org