Saturday, August 8, 2020

New Grass-Roots Alliance For Those Living With Rheumatology Conditions Aims to Educate During COVID-19

COVID-19 evokes different images and thoughts depending on who you are and the community to which you belong. I’m part of the rheumatology community, following my diagnosis of rheumatoid arthritis in late 2006. In terms of COVID-19, I’m at higher risk than the general population. Within that group, I am at slightly lower risk because I take traditional conventional synthetic disease-modifying anti-rheumatic drugs (DMARDs) rather than biologic DMARDs or new ones (small molecule format) that suppress immune systems more than traditional medications.

From what I have seen on social media and in my discussions with others who live with inflammatory arthritis, there is widespread concern about what COVID-19 will bring. Inflammatory arthritis conditions are diverse – as unique as the individuals who live with them. They are unpredictable and leave a person feeling like they have little control over their health and their lives. COVID-19 adds to that unpredictability and fear.

I belong to a grass-roots, Canadian patient organization called the Canadian Arthritis Patient Alliance (CAPA). We have no office or employees. We all live with some form of arthritis and undertake initiatives ourselves. In early March, our steering committee meeting via Zoom was pretty typical. A week later, we had gone into self-isolation, or are practicing physical-distancing. Within a few days, we produced a webpage to provide credible resources related to COVID-19 for people like us and update it weekly. Behind the scenes, we have been in contact with other patient organizations, rheumatologists, researchers, rheumatology association and others to share credible information and to advocate where and when we need to.

I have watched other arthritis patient organizations respond with blazing speed to develop resources for their communities. An online community of patients has started the #HighRiskCOVID19 social media campaign aimed at sharing what it feels like to be at high risk for COVID-19 and to remind people that their lives are important. There have also been patient- and patient organization-led tweet-chats, and online Q&A sessions.

People who live with arthritis fear the unknowns related to COVID-19. Will they get COVID-19? How do they get tested for it? What should they do about taking current medications? Will previous lung infections or other issues cause more complications? What happens to the medication supply? (For instance, many of us take hydroxychloroquine and, given the hype about taking this drug as a potential treatment for COVID-19, there is real concern about access and shortages.) What additional medical issues are experienced after having COVID-19?

Patients with rheumatology conditions are concerned about potential drug shortages.

The activity of a person’s inflammatory arthritis can be significantly affected by stress, so the anxiety about COVID-19 and its potential impact can be profound. Given the range of concerns and questions, people wonder who they can talk to. My community has come together to help.

As a scientist, I know this is an unprecedented time. I have never lived through such a global health crisis. Though I lived in Toronto through SARS, it did not feel like this. I did not feel threatened. I didn’t self-isolate, and I did not see the scales of economy that I am currently witnessing.

Though the world is feeling out of control, there are some things I can still control. I have chosen to mostly self-isolate. When I do go out, I practice physical-distancing. I’m taking my medicines as prescribed. I had my first virtual rheumatology appointment. I tune out the TV and social media when I need to. And I’m also taking some control as an active member of the greater rheumatology community.

Through CAPA, I am privileged to have become involved with the COVID-19 Global Rheumatology Alliance. The Alliance was set up in late March through the hard work of Dr. Philip Robinson, a rheumatologist in Queensland, Australia, and his colleagues. The group is now a full-fledged collaborative effort that includes volunteer hours and support of rheumatologists and their associations, patient organizations, industry, academic and healthcare organizations and journals.

With more than 300 supporting organizations, the Alliance’s mission is to create a secure, de-identified, international registry for case reporting. The output will be curated and the results disseminated. The idea is to take advantage of this extraordinary opportunity to study COVID-19 in the global rheumatology community and to learn how to best help patients. The healthcare provider registry has over 300 patient cases and the patient survey already has over 10,000 responses. I am proud my community has come together in such a short time to do this.

While so much of the world currently feels out of control, I know that myself and a lot of other people with pre-existing health conditions are simply trying to take things one day at a time – maybe even more so than usual. I hope people who live with arthritis can learn about amazing things being done in the name of science and medicine. I am grateful to the global rheumatology community, which like many other communities, is rallying to support its members at this time. All of these efforts give me hope.

 

Dawn Richards, PhD, is founder of Five02 Labs Inc, a boutique firm that provides scientific and patient-based services to clients.

Competing interests: Five02 Labs’ clients include pharmaceutical companies (speaking fees, honoraria). Dawn is the vice president of the Canadian Arthritis Patient Alliance, a patient run, volunteer-based organization whose activities are largely supported by independent grants from pharmaceutical companies.

*The author wishes to thank CAPA Steering Committee members for their input in this article.

A previous version of this story was published originally by BMJ on March 31, 2020.

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