According to a release on Public News Service, the state of West Virginia just implemented a new bipartisan law to support individuals with rare diseases and their families, a particular need during the rampant spread of COVID-19. The law, which developed the Rare Disease Advisory Council, allows patients and their families access to policy makers to drive healthcare decisions. Read the full SB 269 text in the West Virginia legislature files.
Rare Disease Advisory Council
Introduced in January 2020, Senate Bill 269 was developed to help advise research, diagnosis, treatment, and education on rare diseases. An estimated 180,000 West Virginia citizens will be diagnosed with a rare disease or condition during their lifetime.
The Rare Disease Advisory Council will include a variety of members, including:
- The Secretary of the Department of Health and Human Resources
- Three physicians with experience treating rare diseases
- Three adults (18+) with a rare disease or family members of a person with a rare disease
- A registered nurse with experience treating rare diseases
- Someone with an advanced public health degree
- Three representatives from a rare disease advocacy organization
In addition to the widespread diagnosis, treatment, and education on rare diseases, the Rare Disease Advisory Council will also offer direct help to patients themselves.
Fernando Andrzejevski, the executive director of the West Virginia Hemophilia Foundation, finds this desire to teach patients about burgeoning treatment options and healthcare advancements to be promising. Andrzejevski, who has a son with hemophilia, shares that 560 drugs are in clinical trials to treat rare diseases. By teaching patients about these trials and potential treatments, the patients are then better able to advocate for their needs.
Additionally, this will empower patients to seek out better options for their care. While estimates say that around 30 million Americans have a rare disease, Andrzejevski notes that such a small number of patients have access to effective treatment and care options. He hopes that the Rare Disease Advisory Council will assist patients with conditions like cystic fibrosis.
11 other states already have rare disease legislation or advisories. These include New York, North Carolina, Minnesota, Missouri, Nevada, and Pennsylvania.