Advocating During a Pandemic: Advocacy and Arthritis Go Hand in Hand

Patrice Johnson, Platinum Ambassador, CA
California State Advocacy Committee Member | Live Yes! Online Community Forum Moderator

The COVID-19 pandemic has radically affected all our lives. On the advocacy front, Arthritis Foundation Advocates and Ambassadors were concerned that we could not meet in person with our legislators to advocate for our priorities, especially as the pandemic made legislative changes even more necessary. Many of us came to the solution of meeting virtually.In April, my State Director, Steven Schultz, arranged a virtual meeting over Zoom for myself and other members of the California State Advocacy Committee with our Senator. Inspired by this meeting, I contacted my Congressman’s Chief of Staff and set up a virtual meeting for myself, Steven, and another Platinum Ambassador. On both calls we talked about how the Arthritis Foundation is keeping patients up to date on COVID-19. The Arthritis Foundation website, the most trusted source of information for arthritis patients, provides a lot of key resources. I talked about how the Live Yes! Online Community has dedicated a special thread to discussing COVID-19 with medical professionals. I also educated my legislators about the Arthritis Foundation Helpline, which has social workers ready to answer any questions arthritis patients and their families may have.

On both calls, people asked me what it like to live with arthritis. I get this question a lot. There are so many misconceptions when it comes to what living with arthritis is like. I told them that I have had osteoarthritis (OA) for 35 years. Over the past nine years of living with rheumatoid arthritis (RA), I have dealt with plantar fasciitis, a Baker’s cyst (a form of gout), and a vein ablation due to complications from exposure to the flu. In 2018, I was diagnosed with severe hearing loss in both ears and now wear hearing aids. My legislators’ staff members on these calls had never heard about the comorbidities of arthritis.

One of my biggest takeaways from these two virtual meetings was that many people are not aware that people with arthritis – especially arthritis patients over 60 – are at high-risk for COVID-19 due to having compromised immune systems. When the pandemic first began, a medication commonly used to treat rheumatoid arthritis and lupus, Hydroxychloroquine, was mentioned in the news as a possible treatment for COVID-19. These news stories also mentioned how chronic diseases like arthritis cause patients to be immunocompromised and at high-risk to becoming infected. The fact that people do not know these facts even after all the media attention means that we have work to do. We need to keep the momentum going and educate more people!

Part of our role as Advocates is to emphasize the financial, physical, and social impacts of arthritis, because so many people do not understand. It is estimated that by the year 2040, 78 million people will have arthritis. Our work as Advocates and Ambassadors will always be to improve the lives of arthritis patients by changing laws and getting life-saving research funded. When we cannot meet our legislators in person, virtual meetings and emails are necessary to take advantage of the national attention on arthritis and make sure Congress takes it seriously.

Luckily, August Recess is rapidly approaching. This is when members of Congress return to their home districts to learn from constituents like you and me. Last year I had a productive meeting with my Congressman’s Chief of Staff. I plan on doing so again this year virtually. As a Moderator of the Online Community’s Advocacy in Action section, I posted a thread about past August Recess visits to increase our momentum and encourage other Ambassadors to schedule virtual meetings. Several Platinum Ambassadors have already posted their pictures and memories – will you join us? Visit the Advocacy in Action section of the Live Yes! Online Community at liveyes.arthritis.org to join the discussion.

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