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As COVID-19 Spreads, WV Law Helps Folks with Rare Diseases

All childhood cancers are considered rare diseases. (Adobe stock)
All childhood cancers are considered rare diseases. (Adobe stock)
April 2, 2020

CHARLESTON, W.Va. -- People with rare diseases are particularly vulnerable during the coronavirus pandemic, and West Virginia has just enacted a new bipartisan law designed to provide them with more support.

The Rare Disease Advisory Council gives patients a forum to communicate with policy makers about pressing health care issues.

The council also will educate patients about new treatments and health care developments, according to Fernando Andrzejevski, executive director of the West Virginia Hemophilia Foundation.

"There are so many new therapies coming out," says Andrzejevski, whose son has hemophilia. "I think the last data I saw is that 560 drugs are currently under clinical trial for different types of rare diseases, which is the highest it has ever been."

The council will have 12 members appointed by Gov. Jim Justice, including doctors, family members with rare conditions and state health officials. Members will be appointed later this year.

West Virginia joins 11 other states that have similar legislation including New York, Pennsylvania and North Carolina.

Andrzejevski says these boards lay the groundwork across the nation to provide better care for people with serious illnesses such as hemophilia, cystic fibrosis and childhood cancers.

"Only 5% of rare diseases actually have a treatment," he points out. "So establishing and creating partnerships in the states, I think that will be very important to the councils to make sure families don't have miseducation and miscommunication."

About 30 million Americans have a rare disease, according to the National Institutes of Health.

Health officials estimate about 180,000 West Virginians will be diagnosed with some form of uncommon medical condition during their lifetime.

Diane Bernard, Public News Service - WV