Working Together to Expand Skin Disease Advocacy
On September 26th Todd Kuh and Mariah Lowinske, two patient advocates with Pemphigus Vulgaris, and I attended the American Academy of Dermatology Legislative Conference in Washington DC. As a member of the Coalition of Skin Diseases, the IPPF sends advocates to this conference annually so we can learn about the latest initiatives prior to lobbying Congress for support for treatment and research.
Being part of this collaborative gives the IPPF unique access to members of Congress. We have the benefit of the huge lobbying power of the Academy while sharing the voices of many small and large skin disease patient groups. With a membership of more than 19,000, The American Academy of Dermatology represents virtually all practicing dermatologists in the United States and the Coalition of Skin Disease member organizations serve over 42 million Americans. You can see why we have clout!
“Legislation can absolutely benefit our patients and determine if a patient is evaluated and treated by the correct doctor or specialist.” -Todd Kuh, IPPF Board Member”
This year, over 180 advocates from over 35 states stormed Capitol Hill asking for support on important issues that affect people with skin disease including the Pemphigus and Pemphigoid community. Our 2015 Legislative “Asks” for Congress included; advocating for lower prescription drug prices, improving patient’s access to treatment, and increased research funding for the National Institutes of Health and FDA. Todd Kuh, who is also an IPPF Board Member, says “Patient advocacy is important to Pemphigus & Pemphigoid patients. Pemphigus and Pemphigoid are extremely rare diseases and funding for research can be difficult to obtain. Legislation can absolutely benefit our patients and determine if a patient is evaluated and treated by the correct doctor or specialist. Legislation can ensure that patients have the option of selecting their doctor and receive the type of medication necessary regardless of cost.”
In coalition, there is strength!