Does patient advocacy really matter to Congress or to state legislatures? Yes, it does. We hear this again and again from our volunteers who have taken the time to speak with their elected representatives. Politicians listen. Period.
If you don’t speak up, the people who represent you may never know your issue exists. They are particularly eager to hear how their constituents are faring during the pandemic. “The patient voice needs to be heard,” says Patrick Stone, National Psoriasis Foundation vice president of Government Relations & Advocacy. “Congress is poised to take more action around health care in the next couple of months than they have in over a decade.”
The way NPF does advocacy was put to the test on Tuesday, April 21, when we were scheduled to fly to Washington, D.C., for our 16th annual Capitol Hill Day. This day is our biggest advocacy event each year. For the past 15 years, NPF’s advocacy staff, patients, researchers and health care providers have traveled to Washington to meet our representatives. We build relationships and gain allies. We tell our stories and ask for their support of policies to make health care more accessible and affordable, discuss the importance of increased research funding, and highlight other issues that matter to our community. Capitol Hill Day’s importance is rooted in one of the core aspects of our mission: to elevate the patient, provider and researcher voices.
Our issues this year were – like most things right now – related to the current pandemic:
• Reopening the health care exchanges so patients with chronic disease and without employer-provided insurance can still have robust plans.
• Protecting patients from step therapy by enacting guardrails in the next COVID- 19 relief package and continuing to advocate for passage of the Safe Step Act for permanent protections.
• Bringing to light Medicare’s high outof- pocket costs and asking Congress to adopt an out-of-pocket cap for Medicare Part D, the program’s drug benefit.
We had to do all of that without actually going to Capitol Hill. “Our in-person meetings were adjusted – not canceled or rescheduled,” Stone says. “We moved everything to conference calls. Our volunteers still participated. They are the entire reason we do this event.”
Here’s a glimpse of how it all worked, with some tips on how you can help in the future.
The 3 Rules of Success: Planning, Planning and Planning
Julia Boles, NPF Grassroots & Advocacy manager, says she was surprised by one aspect of Capitol Hill Day: “So little changed,” she says, even though she didn’t spend the day shepherding her charges through crowded legislative office buildings and making sure they arrived everywhere on time, stayed on message, stayed hydrated and stayed together in the crowded halls and cafeteria. And there were no chance meetings when a senator or representative is unexpectedly available or happens to walk through the office waiting room at the perfect time.
“[But] we still had the training webinar the week before and the dinner the night before, except there was no dinner,” she says. Instead, volunteers met virtually without the shared meal. “We still divided our volunteers into small teams, and they still ‘went off’ to each meeting together.” The meetings were held via conference call.
But though she didn’t walk her annual marathon in the halls of Congress, Boles and her advocacy colleagues found that the planning and coordination for this Capitol Hill Day exceeded what they’ve experienced in the past.
More than 40 volunteers were up to the challenge this year, most of them patients. Many of our researchers and doctors had to take a pass due to new clinical demands created by the crisis, but Wilson Liao, M.D., associate professor of dermatology at the University of California, San Francisco and chair of NPF’s Scientific Advisory Committee, was there as usual. And as in past years, he brought along four of his medical students.
“During phone-only meetings, it’s especially important to review which group member will be talking about each issue, because switching between speakers is more of a challenge over the phone,” says Boles. To keep everything on track, advocacy staff prepared a four-page guide on how to make calls and a 25-page master plan document that outlined how everything would go.
“The legislators seemed happy to talk to us,” says Hannah Lynch, NPF associate director of Federal Government Relations & Health Policy. “Many expressed how refreshing it was to hear from their constituents, since all of the traditional in-person visits have been canceled during the pandemic.”
In all, advocates had more than 80 congressional meetings, three of which were with members of Congress themselves. These meetings were with a combination of Senate and House offices representing 25 states. Our advocates were happy to still have their voices heard, even though they did not get the traditional face-to-face interaction with offices.
The meetings provided helpful insight into what Congress is thinking about in the next round of relief legislation. NPF advocacy staff are following up with several offices to provide more information around our requests, specifically our step therapy efforts. Our voices were amplified by more than 400 advocates who sent email messages to their members of Congress from home.
Are Your Ready to Get Involved?
You have many options for participating in advocacy efforts, even if psoriatic disease makes it difficult or even impossible for you to travel. You can always pitch in from the comfort and safety of your own home.
• Sign up to receive advocacy updates and easy ways to write your representatives about issues that matter to the psoriatic disease community.
• Check us out on Facebook. Our page tells you what we’re doing and how you can help. Follow our advocacy volunteers on our Facebook groups for all of our events.
Driving discovery, creating community
For more than 50 years, we’ve been driving efforts to cure psoriatic disease and improve the lives of those affected. But there’s still plenty to do! Learn how you can help our advocacy team shape the laws and policies that affect people with psoriasis and psoriatic arthritis – in your state and across the country. Help us raise funds to support research by joining Team NPF, where you can walk, run, cycle, play bingo or create your own fundraising event. If you or someone you love needs free, personalized support for living a healthier life with psoriatic disease, contact our Patient Navigation Center. And keep the National Psoriasis Foundation going strong by making a donation today. Together, we will find a cure.