Maryland Prescription Drug Affordability Meeting: How the EB Community Can Get Involved
Maryland’s Prescription Drug Affordability Board (PDAB) is holding an important online meeting on Monday, December 8, 2025, to discuss drug pricing in the state. While the discussion isn’t currently focused on EB treatments, decisions made now could eventually affect access to advanced therapies for rare diseases, including those used by people living with EB.
This meeting is an opportunity for people living with EB, caregivers, and medical professionals to help ensure that Maryland understands the unique needs of individuals who rely on specialized and emerging therapies.
Why This Matters for the EB Community
The PDAB is looking at ways to set limits on prescription drug prices. While the goal is to make medications more affordable, these limits could have unintended effects. Rare disease treatments are often expensive and complex to make, so they are particularly sensitive to price caps.
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Reduced access: Some specialized or new therapies may become less available if price limits make them less profitable for companies to supply.
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Insurance restrictions: Coverage may be limited, making it harder to get the treatments patients need.
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Fewer treatment options: Price caps could unintentionally reduce the choices doctors and families have for managing complex conditions.
How to Get Involved:
You can participate in one of two ways:
1. Speak at the Zoom Meeting
- Time: 1 minute 30 seconds per person
- Comments must relate to an agenda item
- Email comments.pdab@maryland.gov with:
- Your name
- Your address
- The agenda item you’d like to speak about
- Deadline: December 3, 2025 (end of business day)
2. Submit Written Comments
- Email comments.pdab@maryland.gov by December 3, 2025
- Use the subject line: “December 2025 Board Comments”
- Include thoughts on how pricing policies may affect access, choice, and affordability for rare disease treatments
Your voice matters! By participating, you help ensure that Maryland's decisions reflect the needs of our EB Community. Please reach out to staff@debra.org with any questions.
