2020 IPPF Virtual Patient Education Conference Recap // CREATING A BRIGHTER FUTURE TOGETHER //
Janet Fairley, MD, FAAD, and David Woodley, MD
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osting this year’s IPPF Virtual Patient Education Conference was a different experience from the usual in-person event. Prior to the start of the conference, we had concerns about technical errors with our laptops and coordinating our audio and visuals from two different sites, so we decided to co-moderate from the same location. This ended up being a good decision, since Janet’s computer couldn’t run the IPPF’s platform due to the University firewall! Thank you and congratulations to Becky Strong, IPPF Outreach Director, and Amethyst Yale, IPPF Outreach Assistant, who smoothly ran the technical aspects of the three-day virtual conference. Before the start of the conference, we were introduced to the IPPF’s new executive director, Kevin Mead. Marc Yale has done an outstanding job in the role for many years—under his leadership the IPPF has grown substantially and has brought increasing visibility and usefulness to patients with pemphigus and pemphigoid (P/P). We are delighted that Marc is not leaving the IPPF. Instead, he is starting a new role that focuses on research and advocacy. We would like to welcome Kevin to the IPPF and to his new role. On the first evening of the virtual conference, there was a panel discussion on the burden of living with
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Quarterly | Fall 2020
pemphigus that featured both patients and disease experts. This included the founder of the IPPF, Janet Segall, who now continues to work as a peer health coach. Jennifer Mangone was also on the panel. She is the Manager of Congressional Policy for the American Academy of Dermatology and was able to provide broad political context. When panelists discussed the burden of their diseases and the hurdles in the way of receiving optimum and affordable care (such as lack of health insurance), Jennifer was able to discuss potential solutions at the local, state, and national levels in the US. As physicians, it is always eye-opening to hear about the effects of blistering diseases on the lives of our patients. In the course of their medical visits, patients are more likely to share how they are tolerating their treatments, or the level of their current symptoms, but they do not always share the details of how hard these diseases can make their lives. The number of people who mentioned the loss of a job or inability to find a job due to their disease was startling. It seemed like it was an exception if a patient had an understanding employer. There is more work to be done, not only to improve treatments for P/P, but also to continue educating the public about these disorders. This is why the IPPF is so valuable.
www.pemphigus.org
