Tennessee Legislature recesses until June 1st

March 25, 2020

The Tennessee Legislature will be in recess until June 1st. As lawmaker hurried to pass key legislation amid growing concern around COVID-19, they continue to think about 39,360 Tennesseans who will hear the words “you have cancer” this year. We commend the legislature for passing the Rare Disease Advisory Council legislation.

ACS CAN supported state legislation to create a Rare Disease Advisory Council this session. 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. 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.