How Can You Advocate for Your Chronic Condition on Capitol Hill?

Health writer
Capitol Hill, the day of Headache on the Hill 2017.
Erin L. Boyle

Want to help make a real impact on your health and health care?

Then patient advocacy in Washington, D.C. or your state capitol might be for you.

Called different names – a fly-in, advocacy day, legislative conference – these events mean the same thing: time dedicated to visiting as many of your senators and House representatives as possible. These advocacy events, often held from January to July, target when bills are funded through the annual budget – called “appropriation season” – or the time when members of Congress fund legislation.

These events allow your voice to be heard.

“Most people, when they think about going to Washington, the first images they would have, particularly now, would be, for instance, the inauguration crowd or the women’s march. And these types of events are crucially important, and they reflect a measure of people’s ability to express their points of view,” says Robert E. Shapiro, M.D., Ph.D., professor, Department of Neurological Sciences, Robert Larner, M.D., College of Medicine, University of Vermont Medical Center.

“But what we do when we go to the members’ offices is actually a little different from that,” he says. “It's actually proposing specific remedies, which we think everybody should agree on. And we look for areas that we can find a consensus to move things forward.”

Dr. Shapiro is founder of Headache on the Hill (HoH). Organized by the Alliance for Headache Disorders Advocacy (AHDA), the grassroots organization hosts a two-day patient advocacy event in Washington, D.C., with a training session on advocacy and the issues, followed by a day on Capitol Hill discussing those issues with people in power.

The group seeks to increase National Institutes of Health (NIH) funding for research into headache disorders among other advocacy goals.

“These Hill days are pretty essential for almost every disease-oriented advocacy group to try to make their cases before Congress. It really is the tried and true method to try to move your legislative agenda,” Dr. Shapiro says.

Headache on the Hill 2018.
Headache on the Hill 2018: 145 participants from 39 states visited their members of Congress.
Dave Huffman

How can you get involved?

Many societies, associations, and foundations offer patient advocates a chance to volunteer on Capitol Hill advocacy days. For instance, the National Psoriasis Foundation held its 14th annual Capitol Hill Day with 30 advocates (a mix of patients, health professionals, and researchers) March 20, 2018. The Arthritis Foundation held an Advocacy Summit in March 2017, which included children, who attended a “Kids’ and High School Summit,” where “they learned how to advocate for themselves and met other children living with and affected by arthritis,” according to the foundation’s website.

To find if your condition has an event in Washington, D.C. that you can take part in, search “advocacy day” on the internet or contact the association or foundation in your condition space and ask if they take part in the legislative advocacy process. Then ask how they choose people to take part; HoH, for instance, has an application process.

Dr. Shapiro calls patient advocacy at the legislative level – the ability to walk into Congressional offices and speak to someone there about your condition – a “remarkable thing. It never stops being remarkable. It never gets old.”

“We all [as Americans] have a constitutional right to talk to these members of Congress and their staff,” he says. “I mean, it's written in the Constitution that we have this right to have redress of our grievances before Congress. Everybody has the ability to call their representatives and say you want a meeting. It may not occur exactly when you want it, but eventually they will meet with you.”

Sign for office of Barbara J. Comstock, Virginia Representative
Looking for your representatives’ and senators’ offices? Here are two signs for lawmakers from Virginia. You find their offices by finding the sign outside their doors.
Erin L. Boyle
Sign for Mark. R. Warner office, Virginia Senator.
Erin L. Boyle

Why go to your lawmaker's office?

Advocacy days are not about the election process or votes, they’re about bringing your chronic condition viewpoint to your elected officials in Washington, according to Dr. Shapiro and Nancey McCann, director of government relations for the American Society of Cataract and Refractive Surgery (ASCRS).

Physicians also advocate on Capitol Hill – for instance, a fly-in in July, of 14 medical specialty groups, is hosted by The Alliance of Specialty Medicine, a “coalition of medical societies representing specialty physicians in the United States.” They include urologists, gastroenterologists, neurosurgeons, plastic surgeons, and ophthalmologists. The Alliance develops legislative priorities that members bring to their representatives’ each year, Ms. McCann says.

“You have to be part of the political process because Congress passes laws that impact them and their specialty and their patient population,” Ms. McCann tells HealthCentral.

“Members of Congress need to hear from their constituents, their physicians that live in their districts and states, as to how these laws and rules and regulations will impact their practice, and most importantly, their patients, because people on the Hill don’t always understand all the ramifications when they do something.”

“We are the experts, if you will, in those areas, and so it’s incumbent upon us to let them know how it impacts the practice and the patients,” she says.

Can you truly create change?

You can make real change by advocating as a patient to government officials. While it can be a hassle to get to traffic-congested Washington, D.C., as well as an expense to travel and stay there, it’s worth it, Dr. Shapiro says. HoH is an example of that: its advocacy work has helped bring migraine and pain awareness to a bipartisan bill, the “Opioids and STOP Pain Initiative Act of 2017” (S.2260 / H.R.4733), that proposes increased appropriations to fund NIH research over the next five years.

Every advocacy meeting, whether on Capitol Hill or your state house, matters, Dr. Shapiro says.

“You don't have any idea before a meeting, which meeting is going make the difference, and that's why it's important to have as many meetings as possible,” he says. “Out of the blue, you'll have a connection with a staffer or with a member of Congress. And they will all of a sudden see this as something that they may want take on, and will resonate with them because migraine affects so many people, headache disorders affect so many people, and pain, in general, is such a compelling issue.”

Dr. Shapiro cautions that patient advocates need to focus on the long-term outcomes of developing relationships with elected officials instead of the short-term satisfaction of a Hollywood-ending-like moment.

“Expect that change is going to be incremental rather than revolutionary,” he says. But it is “possible to see the beneficial effects, the changes.”

“And they end up being durable, and they affect a lot of people,” Dr. Shapiro says of those changes. “I think everybody owes it to themselves if they're concerned about something with respect to themselves, their loved ones, about a health care issue that is a policy issue, then your representatives are there to hear your concern.”

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