CHARLESTON, W. Va. – As lawmakers were finishing up the legislative session this past spring, they continued to think about 12,380 West Virginians who will hear the words “you have cancer” this year. The American Cancer Society Cancer Action Network (ACS CAN) again thanks to the legislature for passing and Gov. Jim Justice for signing the Rare Disease Advisory Council legislation into law.
On November 10, Gov. Jim Justice appointed ACS CAN’s Government Relations Director, Juliana Frederick Curry, to the West Virginia Advisory Council on Rare Diseases along with seven others.
The council will advise West Virginia state agencies, legislators, and other stakeholders engaged in the treatment of rare diseases, as well as promote the development of and access to effective treatments. Those West Virginians who face rare diseases often face unique challenges, including delays in obtaining a diagnosis, misdiagnosis, shortages of medical specialists who can provide treatment, lack of treatment, absence of access to a knowledge base that ensures the most efficient and effective therapies, and higher than average treatment costs.
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About ACS CAN
The American Cancer Society Cancer Action Network (ACS CAN) is making cancer a top priority for public officials and candidates at the federal, state and local levels. ACS CAN empowers advocates across the country to make their voices heard and influence evidence-based public policy change as well as legislative and regulatory solutions that will reduce the cancer burden. As the American Cancer Society’s nonprofit, nonpartisan advocacy affiliate, ACS CAN is critical to the fight for a world without cancer. For more information, visit www.fightcancer.org.