Dawn P Richards: Covid-19 is bringing unpredictability and fear to the rheumatology community

There is widespread concern and fear about what covid-19 will bring, says Dawn P Richards

Covid-19. I just have to write or say that phase, and it invokes different images and thoughts depending on who you are and the “community” to which you belong. I’m part of the rheumatology community thanks to my diagnosis of rheumatoid arthritis in late 2006. In terms of covid-19, this puts me in a higher risk group 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 DMARDs (small molecule format) that suppress immune systems more than traditional DMARDs.

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

I belong to a grass-roots, Canadian patient organization called the Canadian Arthritis Patient Alliance (or CAPA). We have no office and no employees. We all live with some form of arthritis and we undertake all initiatives ourselves. Earlier this month (what seems like eons ago) our steering committee “Zoom” meeting was pretty typical, and a week later, we had all gone in to self-isolation, or are practicing social-distancing. Within a few days we produced a webpage that shares credible resources related to covid-19 for people like us that is being kept updated as best we can. Behind the scenes we have been in contact with other patient organizations, rheumatologists, researchers, rheumatology associations, and others to share information and to ensure what we are sharing is credible.

I have watched other arthritis patient organizations respond with blazing speed to develop resources for their communities. An online community of patients have started the #HighRiskCOVID19 social media campaign aimed at sharing with the world what it feels like to be at high risk for covid-19 and to remind people that their lives are important. There have been patient- and patient organization-led tweet-chats, and Q&A sessions on Facebook and in blogs. It’s safe to summarize that people who live with arthritis fear the unknowns related to covid-19: Will they get covid-19? How do they get tested for covid-19? What do they do in terms of taking their current medications (there has been some information on social media with respect to NSAIDs)? Will previous lung infections or other issues cause more complications with covid-19? What happens to their medication supply (for instance, many of us take hydroxychloroquine and given the hype about taking this and covid-19, there is a real fear about shortages)? What additional medical issues might they experience after having covid-19? The activity of a person’s inflammatory arthritis can be significantly affected by stress, so the fear that covid-19 and its potential consequences to a person’s life (not just the medical questions, but those about having a job, ability to pay bills, etc.) can have profound affects. Given the diverse range of concerns, people are wondering who they even talk to about these concerns, and I see my community coming together to help.

As a scientist, I know this is an unprecedented time that reminds me daily of the power and awe of nature. I have never lived through such a global health crisis, and I lived in Toronto through SARS. SARS 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.

While the world is feeling out of control, there are some measures I can still control. I have chosen to mostly self-isolate and when I do go out, I practice social-distancing; I’m taking my medicines as prescribed (I even had my first virtual rheumatology appointment thanks to temporary codes that have been put in place by our provincial government for some visits); I tune out the tv and social media when I feel saturated and/or need a break; and, I’m also trying to take some control as a 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 an idea set up earlier this month and through the hard work of Philip Robinson (a rheumatologist in Queensland, Australia) and his colleagues, is now a full-fledged collaborative effort that includes volunteer hours from and support of rheumatologists and their associations, patient organizations, industry, academic and health care organizations, and journals. With over 80 supporting organizations at this point, the Alliance’s mission is to create a secure, de-identified, international case reporting registry and curate and disseminate the outputs from that registry. 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 through this time. I am really proud that my community has been able to come together in such a short time to do this and I am privileged to contribute in any way that I am able.

While so much of the world currently feels out of control, I know that myself and a lot of other people with existing health conditions are simply trying to take things one day at a time—maybe even more so than usual. I hope that people who live with arthritis can know about and see first-hand the amazing things that are being done in the name of science and medicine and with few resources to ultimately impact and improve their care. I am grateful to the global rheumatology community, which like many other communities, is rallying to support its members at this time. These efforts all 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 organisation 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.