The purpose of advocating in Washington, DC is to spread awareness and lobby for favorable legislation that affects the entire IPPF community. At Rare Disease Week on Capitol Hill 2016, we had 7 members of the IPPF community advocating for:

  • HR 971/S1421 (OPENACT): legislation that will repurpose “off label” drugs for rare disease indications that are not currently covered by the FDA
  • HR 605/S275 (Medicare Home Infusion Act): legislation that will make it easier for Medicare patients to get infusions done in their homes
  • HR 1600 (Patients Access to Treatment Act): legislation that would cap the amount that insurance carriers can charge patients for more expensive medications
  • S 2030 (Advancing Targeted Therapies Act): legislation that would allow information learned in clinical trials to be used in the development of new therapies
  • All Congressional Members to join the Rare Disease Caucus

From the Advocates:

Sarah Gordon

This was my second time advocating on behalf of the pemphigus and pemphigoid community, having visited Capitol Hill with Marc and Kate in the fall. I expected it to be quite similar, and in many respects it was. However, being part of a larger group of rare disease advocates participating in Rare Disease Week made a big difference. Hearing from two congressmen and the newly appointed head of the FDA at the lobby day breakfast emphasized the importance of bringing together advocates from across the rare disease spectrum – not only the power in numbers but also the variety of knowledge and experiences that we could bring to the table.

Mary Lee Jackson

When I received an email about going to Capitol Hill, I got excited and thought it will be easy. But I was wrong it was hard work. I hadn’t walked so much in all of my life. I felt good about what was done on Capitol Hill. It was worth all I went through to get the word out about rare diseases.

Debra Levinson

There’s plenty we can do this election year: Consider writing letters and making phone calls to bolster these pieces of legislation; email your member of Congress, which is made easy utilizing the automatic draft letters on; or take advantage of in-district lobby day opportunities to build relationships with your members of Congress. I am hopeful now with so much support we can help ourselves heal. We are the voices of the rare disease community with a common role.

Paula Halicki

Not only was I representing myself, the IPPF, and the pemphigus/pemphigoid community, but I was also representing a lot of other people with healthcare issues who could not represent themselves. And quite a few who never will. Plus I told my story, and a Congressman listened.

Doris Chenier

We may have a rare disease but no one will know about it unless we use our voice to speak to people that can make a change.

Angélica N. García Romero

I had great meetings with the staff of the representatives and felt very accomplished. But to top it all, when I was taking my flight back to Puerto Rico, my representative was on the plane too! When all the turbulence stopped, I went up to him, and had the meeting right there.

The First Amendment to the United States Constitution guarantees the right of all citizens to communicate with their elected officials. So you might be asking yourself, “Does my Congressional Representative really care what I think”? Well, the answer is YES!

A recent study showed that if a Member of Congress has not arrived at a firm decision on an issue that a constituent contacting their Washington D.C. office will influence their decision. The study illustrated the degree of influence that the following types of communication will have on a congress person’s decision: phone calls 72% influence, individualized postal letters 70% influence, and individual email messages 69% influence.[/vc_column_text][vc_custom_heading text=”The study illustrated the degree of influence that the following types of communication will have on a congress person’s decision: phone calls 72% influence, individualized postal letters 70% influence, and individual email messages 69% influence.”

Writing your Congressional Member may seem like a small thing, but they need to know that their constituents are paying attention. They want to hear about what issues are important to you. When writing your letter/email to your Congressional Member, you may want to share your story with them and how it relates to your issue. Personalizing your letter/email will grab their attention and give them more reason to consider your issue. It is recommended that you keep your letter/email simple and no more than three paragraphs. Provide facts about the issue you are addressing and try to be as specific as possible. Be sure that you cite the name and number of the Bill or Legislation that you are asking them to support. If they are already a supporter of the Bill, thank them.

Don’t forget to provide your contact information so they can respond directly to you. Remember, your voice can go a long way towards helping your Congressional Member know where the public stands on your issue. The more you correspond with your representative, the more it will help you build a long-lasting relationship with him or her. That relationship is not only your right as a citizen, but a privilege you should exercise.

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.

There are two things I can specifically recall never wanting to do: public speaking and participating in politics. This is exactly what I find myself doing recently though when the IPPF asked if I would be interested in meeting with the staff of my Senators and Representatives in their local officers to advocate for rare diseases like Pemphigus. I had no idea what this would mean, but I knew this is exactly what I and my rare disease community needed. Having a rare disease has taught me about the beauty of life and not wanting to miss out on any opportunities before me. It has also taught me about helping others and self-growth.

At first, I did not think it was possible to have a full time job as a nurse and meet with politicians, but the IPPF worked with me over the phone to prepare for my meetings and to discuss bills pertaining to rare diseases. I also immediately went online to research my members and their voting records concerning rare diseases.

I met with the staff of Oklahoma Representative Steve Russell, Senator James Inhofe and Senator James Lankford. I found speaking with Congressional staff much less intimidating than speaking with the Congresspersons directly might have been. I was prepared to ask that Representative Russell to join the Rare Disease Caucus in the House of Representatives and to vote for bills allowing patients participating in clinical trials to be exempt from taxing their financial compensation. I was surprised to discover that there were no coalitions in the Senate for rare diseases. When I met with my Senators’ aides I asked that the Senate form such a coalition. I also asked for support of a bill that would allow off-label drugs to be used for multiple purposes.

I am neither brave nor eloquent with words but the knowledge that I could encourage the passage of bills to find cures or treatments for people all over the world was inspiring. I quickly found my courage and knew my purpose. The meetings that had initially filled me with anxiety ended up being great. The Congressional aides I spoke with and shared my heart with actually listened! I shared my personal story and asked for their support helping our cause. There was even an emotional moment with a senator’s staff member when our passion spilled over. I am now open to whatever is in store for me as a rare disease patient and advocate. I hope that our combined effort takes the rare disease community closer to a bright future of hope and cures.

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!