Rare Disease Week on Capitol Hill 2017

May 23, 2017 | Advocacy & Policy

Citizen Advocacy – DC legislators welcome our passionate voices during Rare Disease Week 2017

by Bill Drake, TargetCancer Foundation Advocacy Council Member and Rare Disease Advocate 

While my esophageal cancer remains in a state of remission, I’ve been seeking opportunities to help support the efforts of organizations like TargetCancer Foundation.

Recently, I was Vice President and a Board member of the Esophageal Cancer Awareness Association, and during that time I learned about the outstanding rare cancer research that TargetCancer Foundation has been funding for the past eight years. I have since been meeting with Jim Palma, hoping to help in any way I can to support TargetCancer Foundation’s important mission.

When Jim suggested that I attend Rare Disease Week on Capitol Hill this year, I jumped at the opportunity, and joined the fight for public policy that encourages the development and availability of safe, effective, and affordable treatments for rare disease patients like myself.

With no prior experience in legislative advocacy, and having never been invited before to walk the halls of power on Capitol Hill, I was excited to experience, even for only one day, how American “citizen advocacy” actually works.

Three groups were engaged with the organization and execution of this years Rare Disease Week. EveryLife Foundation is the sponsor of Rare Disease Legislative Advocates which is responsible for organizing RDW and did an amazing job coordinating all the activities. Ms. Stephanie Fischer, Senior Director of Patient Engagement & Communications at EveryLife Foundation was our primary liaison leading up to the event, and on February 27th, she welcomed me and about 250 other citizen advocates from around the country to Washington. The third group involved in the success of our day on the Hill was Soapbox Consulting. Soapbox handled all the scheduling details of access to our state legislators.


Most of us attending this year were first time advocates, so accordingly, EveryLife Foundation set aside our first day for a crash course in the art and science of being an effective and persuasive advocate. We gathered to hear a series of speakers on many relevant topics including; What to Expect from the New Congress and Administration, Top Health Policy Issues for 2017, Rare Disease Legislation in the Queue, Tricks of the Trade: Preparing for a Successful Meeting, and Scenes from the Hill: Your License to Advocate.
We also learned a few important facts about the state of rare disease in this country:
• There are about 7,000 rare diseases. (There are a total of about 10,000 identified diseases; 7,000 rare and 3,000 other diseases.)
• A disease is considered rare if it affects fewer than 200,000 Americans
• 95% of rare diseases have no treatment
• Rare Diseases affect 30 million Americans (or 1 in 10 Americans or one on every elevator or four on every bus.)
• About 2/3 of Americans with rare diseases are children

The day after our orientation/training day, more than 250 freshly minted citizen advocates descended onto Capitol Hill en masse. We were organized into small groups by state, and each group was given the day’s itinerary. My group included Isabelle Lousadza, President, and Christen Hsu, Executive Director, of Amyloidosis Research Consortium and Julie Gortze, founder of Rare New England.

Our advocacy itinerary included scheduled meetings at the offices of Senators Elizabeth Warren and Edward Markey, and Representatives Joseph Kennedy and Katherine Clark. We arrived at each office fully prepared to tell our personal stories with rare disease, and to advocate for the following legislative initiatives:

• Full support of the 21st Century Cures act – this act was signed into law on December 13th 2016 by President Obama, and our ask was that congress pass the supplemental funds insured by the bill. (www.congress.gov/bill/114th-congress/house-bill/6)
• We requested support of a $2 billion increase in discretionary funding for the NIH for 2018.
• We requested support for $2.8 billion increase in discretionary funding for the Food and Drug Administration (FDA) for 2018.
• We requested support for the Orphan Products Extension Now, Accelerating Cures and Treatments act, (OPEN ACT) – legislation that holds the potential to double the number of treatments available for rare disease patients.
• We asked our representatives to join the Rare Disease Caucus.

What I learned about the corridors of power on Capitol Hill is that there actually are many really long underground tunnels that get you to the many really long above ground corridors. After descending into the tunnel system, one tunnel lead to one side of the Capitol grounds where we found our representative’s offices. Each office sported the same door and same engraved name plaque.

We then descended into the tunnels again to navigate to the other side of the Capitol grounds to the offices of our senators – we found more long plain looking corridors with identical doors and name plaques. What was most surprising about the experience was how totally full all the tunnels and corridors were with literally thousands of smartly dressed men and women, like us, working the corridors of power with rehearsed talking points and freshly printed handouts.

Our first stop was with Senator Elizabeth Warren. Her suite was comprised of three rooms, one of which was a small conference room. Her staff led us to the conference room where we joined about 10 other advocates. When Senator Warren arrived, we each had a chance to pitch her, and have our photo taken with her. She was very jovial and accommodating to each of us. She asserted that our efforts are very much appreciated, and she commented that our personal stories and advocacy can and does have a significant influence on legislation and public policy.

We then met with a senior staff member at Senator Markey’s office. Senator Markey spoke the day before at our RDW orientation meeting, and he is a member of the Rare Disease Collation, so we were “preaching to the choir” at his office. We were assured that our efforts to advance the cause of rare disease support on the hill was always effective and greatly valued.

The day wound down with visits to the offices of representatives Joe Kennedy and Katherine Clark. We were met by senior staff members Abigail Burman and David Bond, and we presented our pitches. Our message was very well received, and we were encouraged to follow-up with regular contact with both law makers.

The take away from my advocacy experience at Rare Disease Week, and that of many of my fellow advocates, is that regardless of the new policies of the current administration, well organized citizen advocacy efforts like Rare Disease Week on Capitol Hill will remain an extremely important and effective tool that can educate our elected officials about our deep concerns and passions. As Americans touched by a rare disease, it’s both our responsibility and right to speak out and advocate for legislation that will increase the availability of safe, effective, and affordable treatments.