As lawmakers hurry to pass key legislation, they continue to think about 39,360 Tennesseans who will hear the words "you have cancer" this year. The American Cancer Society Cancer Action Network (ACS CAN) commends the legislature for passing the Rare Disease Advisory Council legislation.
ACS CAN supported legislation to create a Rare Disease Advisory Council. This council will advise Tennessee State agencies engaged in rare diseases, as well as promote the development of and access to effective treatments. Those Tennessean who face a rare disease often face unique challenges including delays in obtaining a diagnosis, misdiagnosis, shortages of medical specialists who can provide treatment, and lack of access to a knowledge base that ensures the most efficient and effective therapies and medication for treatment.
Unfortunately, rare diseases also affect our youngest Tennesseans 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.
Treatments and innovations in the rare disease space are fast-growing and becoming more commonplace within Tennessee. It is important that Tennessee stays at the forefront of treatment options and guidance. The Tennessee Rare Disease Advisory Council will be composed of qualified professionals and persons 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 praises the legislature for passing legislation in these uncertain times that will reduce suffering and death for those facing rare cancers in our state and calls on Gov. Bill Lee to sign it as soon as possible.