Patient diagnoses, treatments, access to care discussed at inaugural meeting

David Bick, MD, has been selected by Governor Kay Ivey to serve on the newly-created Alabama Rare Disease Council. The council held its inaugural meeting August 27, 2018 in Birmingham.

Bick, who sees rare disease patients at the Smith Family Clinic for Genomic Medicine, brings to the council more than two decades of clinical experience, as well as expertise in the rapidly-expanding field of genomic medicine. He has published more than 70 peer-reviewed papers on genetics and genomics.

“Rare disease isn’t rare. We estimate one in ten Americans has a rare disease, which translates to about 400,000 people in Alabama,” Bick said. “The Council will collect data on rare disease and help foster collaborations between stakeholder organizations across the states. Through research and by partnering with medical providers, patient advocacy groups, biotech companies and funding agencies, we can positively impact patients and families with rare disease in Alabama.”

The Council is headquartered at the University of Alabama at Birmingham (UAB) School of Medicine. Bruce Korf, MD, PhD, chief genomics officer at UAB, serves as chair.

At its inaugural meeting, council members discussed ways to not only help rare disease patients, but also their physicians. The council also noted how the Alabama legislature has supported the rare disease community in ways that has helped patients find a diagnosis. Lastly, members spent time discussing the landscape of care for patients with rare diseases including diagnosis, treatment, development of new therapies and insurance issues that arise.

The council will report annually to the legislature with the goal of addressing rare disease policies that will positively impact the residents of the state. Appointees to the council will serve three-year terms.

Legislation creating the Council was passed in 2017.