Rare Disease Advocacy
Cystic Fibrosis Awareness Month
Governor Asa Hutchinson proclaimed the Month of May Cystic Fibrosis Awareness Month in Arkansas. Cystic Fibrosis Awareness Month is an annual national event to promote education and help find a cure for the disease.
Cystic Fibrosis (CF) is a hereditary disease that affects lungs and digestion. The disease impacts over 30,000 children and adults in the United States.
CF occurs in a child when both parents have a defective gene. It is estimated that more than 10 million Americans are symptomless carriers of the defective CF gene. In patients with CF, the defective gene causes the body to produce an abnormally thick, sticky mucus that clogs the lungs. These secretions produce life-threatening lung infections and obstruct the pancreas, preventing digestive enzymes from reaching the intestines to help break down and absorb food.
Thanks to extraordinary medical and scientific progress, the life expectancy of someone born with CF has doubled in the last 30 years.
Celebrating CF Awareness Month & Beyond
On Friday, May 20, 2022, the Junction Bridge in Downtown Little Rock was lit in purple in honor of CF Awareness Month.
The Arkansas Chapter of the Cystic Fibrosis Foundation (CFF) held the Little Rock Great Strides fundraising walk on May 21, 2022, at the Little Rock Zoo. The walk raised over $87,000 to help advance the organization’s mission of finding a cure for CF.
On October 22, 2022, CFF will host the Finest Gala. The Gala is an opportunity to unify the community support of CF and help the organization achieve its fundraising goals. The night of celebration honors over 20 of central Arkansas’s finest young professionals, including inVeritas’ own, Meagan Davis.
During the 93rd General Assembly, the inVeritas Government Relations team was honored to work with clients on multiple bills that positively impacted rare disease patients in Arkansas, including those with CF. We helped our clients advocate and develop communication strategies to allow rare disease patients access to life-extending medications and ensure adequate representation where decisions are being made.
inVeritas worked to enact Act 97, which ensures step therapy protocols in Arkansas are based on widely accepted medical and clinical guidelines and provides a clear process for healthcare providers and patients to request exceptions to step therapy protocol. This ensures patients have access to the doctor-recommended medications that work best for them. The bill was sponsored by Senators Cecile Bledsoe, Missy Irvin, and David Wallace and Representatives DeAnn Vaught and Robin Lundstrum.
inVeritas also helped pass legislation to ensure rare disease patients have adequate representation on the Arkansas Drug Utilization (DUR) Board. Act 745, sponsored by Senators Missy Irvin and Cecile Bledsoe and Representatives Michelle Gray and DeAnn Vaught, added two rare disease specialists to the DUR Board. These specialists have the knowledge to properly advocate for the needs of rare disease patients.
inVeritas is proud to support the CF community in Arkansas!
You can read the Governor’s CF Awareness Month proclamation here.
Interested in attending the Finest Gala? You can purchase tickets here.
inVeritas team member, Meagan Davis, volunteers at Great Strides.