Charleston, W. Va. – As lawmakers were finishing up the legislative session, they continue to think about 12,380 West Virginians who will hear the words “you have cancer” this year, and the over 300 West Virginians currently diagnosed with a bleeding disorder. The American Cancer Society Cancer Action Network (ACS CAN), the West Virginia Chapter National Hemophilia Foundation (WVNHF) and their coalition partners commend the legislature for passing and Gov. Jim Justice for signing the Rare Disease Advisory Council legislation.
The coalition supported legislation to create a Rare Disease Advisory Council. This 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 a rare disease 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.
Unfortunately, rare diseases also affect our youngest West Virginians including those who face a cancer battle. All childhood cancers are considered rare and while mortality rates have been decreasing, the overall incidence of childhood cancer has been slowly increasing since 1975. Other cancers that are considered rare include brain, pancreatic, ovarian, thyroid and stomach cancers. Other “common” rare conditions include cerebral palsy, cystic fibrosis, multiple sclerosis, narcolepsy, sickle cell, several types of immune disorders and 7,000 other known conditions. It is expected that 1 in 10 Americans will be diagnosed with some form of rare disease during their lifetime, which translates to 180,000 West Virginians affected by a rare condition
Treatments and innovations in the rare disease space are fast-growing and becoming more commonplace within West Virginia, but even with current advancements, 95% of rare diseases do not have treatment. It is important that West Virginia stays at the forefront of treatment options and guidance. The West Virginia Rare Disease Advisory Council will be composed of qualified professionals, patients, and caregivers living with rare diseases and would serve to educate medical professionals, government agencies, and the public about rare diseases as an important public health issue and advise on new treatments for many rare diseases.
ACS CAN, WVNHF and their coalition partners praise the legislature for passing and the governor for signing legislation in these uncertain times that will reduce suffering and death for those facing rare diseases in our state.
Coalition members include: The American Cancer Society Cancer Action Network, West Virginia Hemophilia Foundation, Parkinson’s, National Organization for Rare Diseases, West Virginia Academy of Family Physician’s, Immune Deficiency Foundation, Leukemia and Lymphoma Society, Epilepsy Foundation WV, West Virginia Osteopathic Medical Association, Arachnoiditis Society for Awareness and Prevention, West Virginia State Medical Association, American Lung Association, West Virginia Kids Cancer Crusaders.
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.
About WV Hemophilia Foundation
The West Virginia Chapter National Hemophilia Foundation (WVNHF) Chapter is dedicated to finding better treatments and cures for inheritable bleeding disorders and to preventing the complications of these disorders through education, advocacy and research. Established in 1948, the National Hemophilia Foundation has chapters throughout the country. Its programs and initiatives are made possible through the generosity of individuals, corporations and foundations as well as through a cooperative agreement with the Centers for Disease Control and Prevention (CDC). We were founded out of a need to raise awareness for voices not heard. We have continued to make a difference with the help of our donors and volunteers that make our mission possible. We look forward to your partnership as, together, we improve the lives of people with bleeding disorders.