TN General Assembly Passes Bill Establishing Rare Disease Advisory Council

Amid current uncertainty, bill takes important steps to protect Tennesseans battling rare diseases

Nashville, Tenn.  – Life Science Tennessee (LST), a statewide member organization for life science companies, research institutions and economic development groups, commends the Tennessee General Assembly for passing legislation that establishes the Tennessee Rare Disease Advisory Council and urges Governor Lee to sign the bill. This council will advise state agencies engaged in rare diseases, as well as promote development of and access to effective treatments. We specifically applaud Senator Shane Reeves and Representative David Hawk for their leadership in shepherding this important bill through the legislative process.

A rare disease, sometimes referred to as an orphan disease, is a disease that affects fewer than 200,000 people. It is estimated that 600,000 Tennesseans suffer from any one of 7,000 known rare diseases. While the exact cause for many rare diseases remains unknown, 80 percent of rare diseases are genetic in origin and can be linked to mutations in a single gene or in multiple genes, which can be passed down from generation to generation.

Challenges to a person who has a rare disease include delays in obtaining a diagnosis, misdiagnosis, shortages of medical specialists who can provide treatment, and lack of access to knowledge that ensures the most efficient and effective therapies and medication for treatment.

Qualified professionals and persons living with rare diseases will make up the Tennessee Rare Disease Advisory Council whose mission will be 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. More specifically, the Council will offer TennCare’s Drug Utilization Review Board and Pharmacy Advisory Committee an expanded knowledge base to review treatment options for Tennesseans living with rare diseases or disorders.

“Despite the hurdles many rare disease patients face, researchers in Tennessee are actively pursuing new diagnostic treatments and therapies,” said Ted Townsend, board chairman of Life Science Tennessee and chief economic development and government relations officer at the University of Memphis. “We thank state legislators for their quick efforts to pass this important bill that will ensure Tennessee remains at the forefront of treatment options and guidance.”

Life Science Tennessee led a coalition of organizations in support of this bill including: the American Cancer Society Cancer Action Network; ALS Association, Tennessee Chapter; The Sickle Cell Foundation of Tennessee; Vanderbilt University; Project Alive; Vanderbilt Health; the Biotechnology Innovation Organization (BIO); St. Jude Children’s Research Hospital; Immune Deficiency Foundation (IDF); Pulmonary Fibrosis Foundation; Tennessee Disability Coalition; St. Jude Graduate School of Biomedical Science; the American Heart Association; the National Society of Genetic Counselors; COMBINED Brain, the Consortium for Outcome Measures and Biomarkers for Neurodevelpmental Disorders; and the dada2 Foundation. Also advocating with LST on this bill was the National Organization for Rare Disorders (NORD) and NORD’s Tennessee Rare Action Network .

“We are thrilled to see the Tennessee General Assembly take this important step to give rare disease patients in Tennessee a voice within their state government,” said Terry Jo Bichell,  the TN Volunteer State Ambassador for the Rare Action Network “At a time when many Tennesseans are unsettled by the spread of COVID-19, passage of this bill is a reminder of what can be achieved when industry works with policymakers to put patients first.”

About Life Science Tennessee

Life Science Tennessee is a statewide, nonprofit, member organization whose mission is to advance and grow the life science industry in Tennessee through advocacy, partnerships and alignment with economic and workforce development. Members include companies, universities, research institutions, government and economic development groups, and other industry associations involved in discovery and application of life sciences products and related services that improve the health and well-being of people throughout the world. LST conducts business and economic development activities; advocates on behalf of the industry; educates the public about the benefits of life sciences research and product development; and provides a network for the exchange of ideas, information and opportunities.

About the Tennessee Rare Action Network

The Rare Action Network® (RAN) is the nation’s leading rare disease advocacy network working to improve the lives of the 25 – 30 million Americans living with a rare disease. RAN’s mission is to connect and empower a network of individuals and organizations with the tools, training and resources to become effective advocates for rare diseases through national and state-based initiatives across the United States. The Tennessee RAN represents a broad spectrum of stakeholders including patients, their families, caregivers, researchers industry, physicians and academia. While working on both the national and state level, RAN members engage decision makers to help address issues of importance to the rare disease community and help raise awareness about rare diseases in their state and local communities.