Bill Starrels (l), Marc Yale (c), and Sarah Gordon (r) outside the Washington, DC office of Congresswoman Julia Brownley of California.
When the email landed in my inbox last month asking for pemphigus and pemphigoid patients and caregivers to advocate on Capitol Hill, I didn’t hesitate. I live just miles from the Hill, and it was time to share my story and encourage lawmakers to take a stance on research and treatment for rare diseases like pemphigus and pemphigoid.
When my pemphigus was diagnosed eight years ago, I had just given birth to my first son. It was a difficult time, combining the exhaustion and stress of new motherhood with the pain, confusion, and anxiety of an undiagnosed illness. Once I was diagnosed, the first line of treatment, Cellcept, caused neutropenia, a white blood cell condition making me susceptible to infection. So with much trepidation I used the off-label treatment, Rituxan. In retrospect, I see that despite the challenges of my illness and treatment, I was incredibly fortunate. I saw Dr. Grant Anhalt, who was a true lifesaver, and the Rituxan worked beautifully! I have now been in remission for nearly five years. Most remarkably, I was able to give birth to another healthy and happy boy four years after the first. Yes, when I received the email last month asking for advocates on the Hill, I knew it was time. And what a time it was.
Before heading up to the Hill, I discussed the various bills before the House and Senate with Marc Yale, Certified Peer Health Coach at the IPPF. Unfamiliar with congressional practices and language, I was still easily able to grasp the reasons these bills were so crucial for people with rare diseases like pemphigus and pemphigoid. They dealt with incentivizing drug companies to repurposes medications like Rituxan to make them more accessible; they defined the terms of telehealth, a crucial first step toward allowing highly specialized physicians to treat patients remotely; they aimed to maintain funding for vital NIH research on rare disease treatments. Through my conversations with Marc, I found that my personal story could speak directly to the importance of several of these bills.
On October 20, I met Marc, Kate Frantz, Awareness Program Manager at the IPPF, and Bill Starrels, whose wife has pemphigus, at the Capitol. Entering the congressional office, I had the uneasy sensation of being on an episode of the HBO comedy Veep. But I quickly found that the staffers with whom we met were not snarky and self-involved, but rather knowledgeable, compassionate, and devoted to their work. We met with staffers from the offices of Julia Brownley, Doris Matsui, Barbara Boxer, and Dianne Feinstein from California, as well as my own representative, Eleanor Holmes Norton, of Washington, DC. Speaking to them about the bills at hand through the lens of my personal experience made me feel at once vulnerable—presenting myself for the first time as a person with a rare disease—and empowered—taking the opportunity to advocate on behalf of myself and so many others. I learned a tremendous amount about how Congress functions and also quite a bit about my own potential as an advocate.
In the end, I was correct: the time was right for me to share my story with lawmakers and become an advocate for persons with rare diseases such as pemphigus. Keep an eye on your inbox for messages from Mark and Kate. You might just find that soon the time will be right for you as well.