By Shaina Smith
Finding your rheumatoid arthritis/rheumatoid disease advocacy voice.
Being diagnosed with an invisible chronic pain condition you’ll have to face the rest of your life is about as easy as scaling the side of a mountain, during a thunderstorm, blindfolded while carrying another person on your back.
It should come as no surprise then that many individuals living with chronic diseases would find the mountain scenario more appealing because there is at least an end to the challenge: the peak.
Like an adventurer still out on a summit expedition, I understand all too well the thoughts of pessimism, despair, and fear (“What if I don’t reach the mountaintop?”). Thankfully, I found advocacy. Through advocating, I have curbed those self-defeating thoughts that limit my ability. My invisible chronic illness no longer labels me as JUST a patient: I’m an advocate and you can be an advocate, too.
The patient advocacy scene is bustling with activity due to the number of bills that could impact safety, access to quality care, and innovative treatment options. Legislation can influence how individuals with rheumatoid arthritis/rheumatoid disease (RA/RD) manage their pain and access treatments. That’s why patient organizations like U.S. Pain Foundation have encouraged individuals with autoimmune diseases to advocate for their basic patient rights.
Many have joined efforts to pass patient-focused bills, but additional voices from the community are needed to pave the way toward a future with advanced methods to diagnose, treat, and manage the disease.
Wanted: your inexperience
Here’s the skinny on patient advocacy, summed up in the most stripped-down, simplistic piece of advice: Just be yourself.
Lawmakers don’t care if you understand that biologics are medications produced from living cells that treat RA/RD, while biosimilars are complex substances that aren’t exact copies of the brand-name biologic. Officials want to hear your story as it relates to the topic at hand.
Not convinced yet? Let’s look at an example of positive advocacy at work:
An Alaska Pain Ambassador for the U.S. Pain Foundation, Robert “Cajun Bob” Thoms, has lived with RA/RD for several years. A Vietnam veteran who received prestigious accolades, Thoms became engaged with an Alaskan biosimilar-related bill.
He testified twice, sharing his personal and positive experience with a biologic medication. His testimony urged the state to pass a law that would allow him to receive a less expensive biosimilar option, should one become available to manage his condition.
This advocate humbly shared his personal experience as an RA/RD patient. Thoms was not an expert on the science behind biologics and biosimilars. He felt RA/RD patients should have the choice to receive safe, effective, and affordable pain management tools. Thanks to advocates like Thoms, the bill moved out of numerous committees—proof that sharing your story makes a difference.
An advocacy checklist for people living with RA/RD
Ready for some practical ways to turn your invisible illness into a means to create positive change? I knew you’d say yes! Read the checklist below for helpful tips:
- Take care of yourself. An oldie-but-goodie mantra of U.S. Pain Foundation. You can’t serve the chronic pain community if you haven’t first taken steps to be as well as possible. Listen to your body (it’s OK to take naps!). Realize your limits (if traveling 200 miles to reach your state capital is too much, consider alternative ways to reach out to lawmakers). Ask for help to manage a flare-up.
- Learn the basics. Familiarize yourself with your state representatives, senators, and congressmen. (Don’t know who they are? Visit house.gov.) Start searching for bills that are of interest to you. The U.S. Pain Foundation website has an advocacy section that allows you to track bills by state or issue (www.uspainfoundation.org/advocacy); additional places to find advocacy-related bills include the State Pain Policy Advocacy Network (sppan.aapainmanage.org), CreakyJoints (creakyjoints.org/advocacy), and the Arthritis Foundation (arthritis.org/advocate). Also, research issues such as co-pay card programs, medical cannabis, access to complementary integrative options, patient stability, and insurance transparency.
- Attend a committee meeting. Want to find a bill that impacts the RA/RD community? Advocacy tracking tools, such as the one mentioned on U.S. Pain’s website, include the bill’s status and upcoming hearings. Mark your calendar and be present for that committee’s meeting to see the state legislative process in action. Many states also record meetings live, so you can gain a sense of how a committee operates without leaving home.
- Take action. Participate in a social media campaign, engage in online calls-to-action (an advocacy engagement program encouraging people to submit pre-written letters to elected officials), or testify in person. Reach out to a nonprofit group like U.S. Pain Foundation for resources, support, or help crafting your testimony—they will also be able to walk you through the logistics of signing up to testify or the location of the meeting.
Small actions, big impacts
RA/RD is not what defines who you are as an individual. What you choose to do with your diagnosis distinguishes you and sets you apart from your disease.
There are many beneficial and potentially harmful bills proposed each legislative session. Standing up for the rights of individuals living with RA/RD is one way to unify the patient population’s voice. You can change how your disease impacts your life and turn an invisible disease into a passion-driven tool that educates your community.
I encourage you to begin a new chapter of your pain journey as a patient advocate, one slow-and-steady step at a time.
About Shaina Smith
Shaina Smith is Director of State Advocacy & Alliance Development for U.S. Pain Foundation. Diagnosed with various chronic conditions, including Ehlers-Danlos Syndrome Hypermobility Type, Shaina utilizes her journalism background to mobilize pain patient advocates and engage volunteers to participate in awareness programs.
Photos: pull headshot for Shaina from google drive photos folder; supplement with stock art