Whether you are a cancer patient, have psoriasis, multiple sclerosis, ankylosing spondylitis, a neurological condition, or are a caregiver of someone with these, we all have one thing in common: as patients (and loved ones) with chronic illnesses, we need to advocate for our specific health issues.
HealthCentral’s own, including patient experts Alisha Bridges, Lisa Emrich, Charis Hill, PJ Hamel, Carol Bradley Bursack, and Mike Veny, know about patient advocacy first-hand. They weighed in on their advocacy work in the halls of Congress and beyond. Here are their tips for getting involved, taking part, and making a real difference in patient advocacy at all levels.
HealthCentral (HC): Have you advocated on Capitol Hill/elsewhere for your condition?
Alisha Bridges: I have participated in three different Capitol Hill advocacy days for psoriasis.
Lisa Emrich: I attended the MS Public Policy Conference (PPC) in Washington D.C. for the first time in 2012 and joined the NMSS Government Relations Committee last year. The highlight of the PPC conference are visits with federal legislators on Capitol Hill during which we advocate for specific legislation on behalf of people living with multiple sclerosis and other chronic diseases. I’ve been back several times to speak with federal and state legislators.
Charis Hill: Yes. I joined the Arthritis Foundation Advocacy Summit in D.C. three times, three years in a row: 2014, 2015, and 2016. In 2016 I co-led the California delegation, which means I helped train new advocates and led our group to meetings at the proper time. I have also participated in state-level advocacy days in California with a few different organizations. During these particular experiences I was always the only advocate with my disease, ankylosing spondylitis.
I advocate in a lot of other ways on both statewide and national legislation, including with nonprofit patient advocacy organizations, with the media, and face-to-face with my own elected representatives.
PJ Hamel: I’ve been advocating for women with breast cancer at our local cancer center, Norris Cotton Cancer Center (NCCC) at Dartmouth-Hitchcock Medical Center in Lebanon, New Hampshire, since my own cancer experience began back in 2001. Having been on what I consider a complete cancer journey (biopsy, multiple surgeries, radiation, chemo, life-threatening side effects, long-term drug therapy, lifelong vigilance), I felt (and still feel) qualified to assess cancer patient care at this particular center, the largest (and only Comprehensive Cancer Center) in northern New England. I’ve spoken at public forums at the center; spoken to groups of medical personnel; and have been a patient representative on a number of volunteer committees reviewing patient care, and how to improve its quality.
I’m currently on a working committee called the Patient and Family Advisory Committee (PFAC) which brings together patients, doctors, thought leaders, and some of the cancer center’s administrative staff in an effort to make the cancer patient experience — for both patient and family — as positive as is humanly possible. I feel the wide range of participants in this group makes us an important advocacy agent: we’re not afraid to speak up about poor treatment (no burying our input in a sea of paperwork, no fear of retaliation), and we are heard.
Carol Bradley Bursack: While I don't personally go to Capitol Hill, I'm a long-time co-moderator for the UsAgainstAlzheimers Facebook group. UsAgainstAlzheimers is based in Washington and the purpose of the group is Alzheimer's advocacy and dementia caregiver support. My role as a co-moderator of the Facebook site is to facilitate this vehicle that helps to provide support for the more than 5,000 caregivers (current and past) as well as the people living with dementia who take part in the group. Along with supporting one another, people post on new studies and any progress that we see when it comes to dementia and caregiver support.
HC: What things about advocating (especially on Capitol Hill) have surprised you?
Alisha: How much people without the disease actually care because of the passion you exhibit. I have friends who have never heard of psoriasis prior to hearing my story and they are always sending me psoriasis news or participating in advocacy events.
I'm not real big on politics so I was initially scared to do a Capitol Hill Day. However, it's a lot easier than I could ever imagine, and the National Psoriasis Foundation makes the day painless by providing educational workshops including role playing, where one person is the constituent and the other acts as the congressman.
Charis: My first time advocating on Capitol Hill was exciting and filled with unknowns, which is why it was exciting to me. The most surprising thing I learned was that it's just as important (if not more!) to meet with a health staffer as with the elected representative him/herself. Often the staffer has more time to research, brief the representative, and follow up on the legislation you bring up during the meeting. When I learned this it made complete sense; how could a representative possibly meet with every single constituent?
Another thing that surprised me was how flexible my whole group had to be with our time and energy. Sometimes meetings weren't guaranteed, and we would just drop by an office to see if someone had a moment to talk with us. Meeting times were often changed last minute and sometimes we would only have five minutes with a staffer. Other times a meeting would be interrupted and get cut short in the middle of a sentence. We, and I, learned to be quick and concise about whatever legislation we were talking about.
[Yet] another thing that surprised me was how long it takes to navigate the Congress and Senate office buildings. Capitol Hill is so much more than the Capitol building — there are [six] old, granite office buildings to navigate between on long days filled with back-to-back meetings that never seem to be in the same building twice in a row. Two of these buildings are connected by a basement hallway, but [several] buildings are completely separate; often we'd spend longer waiting in lines to get through security than we would in the meetings themselves.
HC: What unique challenges does your condition pose to advocating, especially in a public place like Capitol Hill?
Additionally, what tips do you have for people with your chronic conditions to cope while advocating in a physical way?
Alisha: The biggest challenge for advocacy day among the psoriasis community is all the walking. Many of us living with psoriasis also have the arthritis component typically referred to as psoriatic disease. The amount of walking you have to do on Capitol Hill Day can cause your disease to flare.
I would suggest wearing comfortable shoes and prepare to pay for [rideshare options] Lyft or Uber if the pain becomes unbearable.
The other challenge is the weather. Capitol Hill Day normally takes place in March, a time when the weather can be extremely cold and there has even been snow. Cold weather and psoriatic disease do not mix and can cause those of us living with the disease to stiffen up.
Charis: I have not been to Capitol Hill to advocate since I began using a wheelchair for long outings; I would definitely take it with me if/when I go back. There is a lot of walking between buildings, down stairs, down hallways, and standing still waiting for meetings or the elevator. We were often in a hurry to be on time for our next meeting, so the pace was incredibly fast. Additionally, while the buildings are all accessible, often the only accessible entrance is inconveniently located and the elevators often have a long wait. That being said, we scheduled long breaks for lunch and were clear that people's health was a priority, so they could rest longer if need be.
Personally, when I went to Capitol Hill my health was a little better, so the walks were good to keep me from getting stiff. The standing part was what was painful; I sat whenever possible and also brought medication with me to relieve pain.
Overall, the entire experience was motivating but also exhausting. I always made sure to plan to rest for several days or longer after each trip because of the additional fatigue.
Lisa: Since Capitol Hill is located on a literally hilly area of Washington D.C., it is important to make sure that you are able to easily travel from building to building. If walking is a challenge, renting a scooter is a helpful way to get up and down the long halls of Congressional offices. It’s also good to know that [several] of the buildings on Capitol Hill are connected by underground walkways that save you time and energy traveling between buildings.
HC: What else do you want people to know about patient advocacy?
Charis: There are so many ways to be an advocate, and they are definitely not all political. Advocating can be anything from advocating for your own care with doctors and health insurance to volunteering for a disease nonprofit to speaking with the media or at marches to meeting with your representatives on Capitol Hill. The one thing that I believe is central to patient advocacy is learning to tell your story, especially in ways that relate to policies, legislation, and funding decisions that affect your ability to be as healthy as you can possibly be with your condition.
Additionally, I strongly believe that advocating on Capitol Hill doesn't have to (and shouldn't) be a one-time thing. For me, advocating in D.C. opened opportunities to network and build both personal and professional relationships with my own elected officials and their staff. In 2014 I first met my Congresswoman, Doris Matsui, in the hallway outside her office. I have a blurry picture of us standing together. Three years later, in 2017, she shared my health care story at a town hall meeting and later asked me to personally speak at a press conference with her in Sacramento. The relationship I have built with her has become a doorway for her to continue learning about my struggle to access affordable health care, and for me to be able to raise more awareness by using my own story.
Mike: We need patient advocates to continue to share stories and encourage others to share their stories. Facts, figures, and data touch our minds. Stories touch our hearts.