Background/Purpose: The COVID pandemic was particularly difficult for persons like me living with rheumatoid arthritis and immunosuppressed. I had to impose myself months of isolation and restrictions, live with anxiety, and to maintain contact with people, learn to use telecommunications to protect myself and have a good control of my disease since I must take two immunosuppressive drugs. With the development and distribution of new anti-SARS-CoV-2 vaccines came the hope that a way out of this was on the horizon. However, in December 2020, I learned that immunosuppressed patients would not have access to these vaccines because of the lack of research data in patients with diseases like mine. The rationale for this was that the initial vaccine studies had not included patients with autoimmune disease and there was a theoretical risk of disease exacerbation after vaccination. This seemed like a paradox to me: refusing to give what might protect vulnerable immunosuppressed persons like me from severe COVID for fear of exacerbating my arthritis. I felt like I had a right to be part of the discussion! With another patient of the Patients Interested in Research in Arthritis (PIRA) patient group, we decided to mobilize ourselves to help find a solution to this unacceptable situation. We contacted the rheumatologist affiliated with PIRA and an infectious disease specialist who offered to support us in our call to make vaccines accessible to immunosuppressed patients with arthritis.

Intervention: A research project that granted immunosuppressed patients access to vaccination and also documented their response to the vaccine was put in place. The team worked fast and hard to establish the research protocol, met with officials at the Ministry of Health of our province where the proposal was submitted and accepted. By May 2021 more than 200 subjects had received two doses of a COVID vaccine. The preliminary results showed a lower response to SARS-CoV-2 antibodies in arthritis patients compared to healthy controls after the 1st dose of vaccine and a better response after the 2nd dose. This encouraged public health authorities to prioritize our population of patients to receive a 3rd dose more rapidly than in the general public.

Maintenance: Thanks to the efforts and support of all, patients with autoimmune inflammatory diseases (rheumatoid arthritis and lupus) had the chance to participate in this project and to demonstrate that the vaccine was safe and acceptable in immunosuppressed patients. In addition, a booster dose 3 months after the 3rd dose was available and helpful as the Omicron wave hit hard.

Quality of Life: PIRA patients have been supportive, informed, and have shared their fears, difficulties, and hope. I’m really glad I was able to work with my PIRA colleague to enhance access to vaccines to vulnerable patients. We feel that we were listened and that we made a difference. We thank the rheumatologists and the research coordinators who worked very hard to make this project happen in a timely manner. Through this collaborative work we feel that we have helped the autoimmune inflammatory disease patient community. Advocacy is important!

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/patient-mobilization-for-vaccine-access-and-improved-care-during-the-covid-pandemic/