Advocating for Access to Genetic Testing for Rare Diseases
At debra of America, we are proud to lead efforts that advocate for improved healthcare access for those living with Epidermolysis Bullosa (EB) and other rare diseases. Together with the Personalized Medicine Coalition, we’ve taken a key role in drafting a sign-on letter to the Centers for Medicare and Medicaid Services (CMS).
What is a sign-on letter? It's a formal document created by an organization or group to advocate for a specific cause, policy change, or action. It is shared with other organizations or individuals who are invited to "sign on" in support of the letter's message. This particular sign-on opportunity is exclusive to patient advocacy groups. By gathering collective signatures, the letter demonstrates widespread support for the issue, adding significant weight to its appeal when presented to decision-makers— in this case, the Centers for Medicare and Medicaid Services (CMS).
The letter requests CMS to provide guidance to states on covering genetic testing, exome sequencing, and genome sequencing for infants and children with suspected rare diseases under the Early Periodic Screening Diagnosis and Treatment (EPSDT) Benefit. These advanced diagnostic tools help reduce barriers to timely and accurate diagnoses, paving the way for better care and outcomes.
We’re grateful to collaborate with partners like Personalized Medicine Coalition and to represent the EB Community in this critical advocacy effort. We also thank the EveryLife Foundation for supporting the letter and for making it available to patient advocacy groups.
To learn more, you can read the letter here. If you are a patient advocacy group interested in supporting this initiative, you can sign on here.
At debra of America, we are dedicated to improving the lives of those impacted by Epidermolysis Bullosa (EB) through direct-to-patient programs and services, education, advocacy, partnerships with treatment developers, and research funding. We strive to foster meaningful change for those living with EB.
