Rare Disease Advocacy in West Virginia
Rare disease advocacy in West Virginia is critical to improving access to diagnostics, treatment, and coordinated care. Because key healthcare decisions are made at the state level, strong local advocacy helps ensure better coverage, resources, and outcomes for the rare disease community across West Virginia.
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State Organization
Currently this state does not have a state organization. For more information, please reach out at advocacy@rareadvocates.org.
U.S. Congress Scorecard
See how West Virginia’s Members of Congress are supporting the rare disease community with this Legislative Scorecard.
RARE Disease Advisory Council
An Advisory Council was established in 2020.
See more information on established rare disease advisory councils.
Rare Disease Caucus
Current Bipartisan Rare Disease State Legislative Caucuses.
Don’t see your state? If you would like to be part of the process to start a rare disease state caucus, please reach out at advocacy@rareadvocates.org.
Newborn Screening in West Virginia
Newborn screening programs vary widely by state, leading to disparate health outcomes. While some states screen for thirty diseases, other states screen for over sixty.
West Virginia’s Advocacy Resources
Insurance Commissioner
- Allan McVey
OICConsumerServicesPC@wv.gov
Department of Insurance
Board of Pharmacy Executive Director
- Michael Goff
michael.l.goff@wv.gov
Health and Human Services
- Medicaid in West Virginia
- Contact: Cynthia Beane
cynthia.e.beane@wv.gov
Department of State Health Services
COVID-19 Resources
State Legislature Calendar
State Legislature Website
Drug Utilization Board or P&T Committee
- DUR Board Website
- P&T Committee Website
- Meeting Schedule: Meets quarterly (check website for schedule of meetings).
- Contact: Priya Shah – Pharm D, Priya.B.Shah@wv.gov, 304-558-1700
- Established DUR Boards and P&T Committees
