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After almost a year since COVID-19 vaccines first received emergency use authorization in the U.S., we’ve learned a lot more about their safety and effectiveness in groups of people where such information was originally lacking.
When the vaccine rollout began in December 2020, people with autoimmune or inflammatory conditions or those taking immunosuppressant medication were permitted to get vaccinated. But since such conditions and medications were not included in the original clinical trials, many people had questions and concerns before doing so.
As doctors and researchers began to study safety and effectiveness in these groups, immunocompromised and high-risk patients had to decide whether or not to get vaccinated without having all the answers. While some jumped at the chance to make their COVID-19 vaccine appointment, others weren’t so quick to schedule their shot.
CreakyJoints member Aberdeen “Deen” Allen, a 54-year-old research chemist from New Jersey who rheumatoid arthritis (RA), was among the latter.
(Read more here about Deen’s journey with RA.)
“I just didn’t feel comfortable — bottom line,” says Deen. “My initial response was fear, because I just didn’t know how my body was going to respond [to the vaccine]. As time went on, I became sort of hesitant.”
Deen ultimately overcame his hesitancy and decided to get the COVID-19 vaccine. He received his first dose on March 30, 2021. But getting to that point was a journey, one that Deen documents in a poster presented at ACR Convergence 2021, the annual meeting of the American College of Rheumatology.
“As a patient living with RA for 15 years, and on immunomodulating therapy for it, I was hesitant about getting the COVID-19 vaccine and needed to weigh the risks and benefits to feel confident getting a shot,” he explains in the poster.
Deen’s path from vaccine hesitancy to confidence is one that many people with similar health conditions can relate to. It’s also a good roadmap for understanding how to help other people gain comfort and confidence in the vaccine, which Deen has since done for some of his loved ones and peers in the immunocompromised patient community.
Here’s more about how Deen used trusted information and shared decision-making with his rheumatologist to reach his decision to get vaccinated.
A Search for Reliable Information
Deen’s discomfort stemmed from the hard truth that while he was “looking for information that would be specific to my needs and experience with RA” he also knew that there wasn’t much information available that was specific to people with such conditions.
“The information we were getting was only about how things were for ‘healthy’ people,” he says, adding that being offered the vaccine when it hadn’t been studied in people with autoimmune or immunocompromised health conditions made him feel like a “test dummy.”
He was hoping to find answers to the following questions:
- Whether or when to get vaccinated
- Whether to pause RA medication, when to do so, and for how long
- Whether to expect any unique side effect, like an RA flare
- Whether any of the three vaccines was best suited for him
Now, of course, months of data and ongoing studies have shed more light on how the COVID-19 vaccine may impact people with compromised immune systems. According to the latest COVID-19 Vaccine Guidance from the American College of Rheumatology and related research, people with autoimmune or inflammatory rheumatic conditions (such as RA) can be assured that:
- COVID-19 vaccination is recommended; there are no reasons not to get vaccinated specifically for this patient population.
- People on immunosuppressant or immunomodulating medications may have a dampened immune response to the COVID-19 vaccine compared to the general population; this is why a third vaccine dose is recommended and why doctors may recommended temporarily pausing certain medications for one to two weeks after getting the vaccine.
- Disease flares after vaccination are uncommon; the benefits of vaccination far outweigh the potential risk of a fare.
- The mRNA vaccines from Pfizer and Moderna are recommended over the Johnson & Johnson vaccine.
But at the time, in the winter and early spring of 2021, such information was scant or just starting to emerge. Deen had to go online and try to find whatever relevant and trustworthy information he could to help with his decision.
Unfortunately, most of the information he encountered was for the general population — not someone with an autoimmune rheumatic disease. When he did find information that was more relevant to his health conditions and medications, he says a lot of it seemed contradictory or lacked consensus, with different rheumatologists advising different things.
Finding COVID-19 Information for the Immunocompromised
In his search for information, Deen came across the Global Healthy Living Foundation’s COVID-19 Patient Support Program, which provides free up-to-date information, community support, and other tailored pandemic resources to chronic disease patients and their loved ones. As Deen wrote in his poster, the program’s collection of fact-checked articles and informational webinars allowed him to “find information to address concerns and anxieties.” This, in turn, “allowed for more meaningful conversations between me and my doctor and helped me make an important decision [about getting the COVID-19 vaccine],” he wrote.
And fortunately for Deen, his rheumatologist encourages him to do his own research and ask questions. He says she addresses his concerns without minimizing them, taking the time to provide thoughtful, informative answers or do more research on her own when needed.
“She is the first person to say, ‘I don’t know. Let me let me research that and get back to you,’” says Deen. “She would let me know as soon as she had the information, which was really reassuring.”
Continuing to Stay Informed
Now that a third dose of the COVID-19 vaccine is recommended for people like Deen, who is considered immunocompromised because of the immunomodulating medication he takes for RA, he plans to get it as soon as his medication schedule allows.
“I’m a little apprehensive about getting the third dose because of [the side effects] I experienced with the second one,” says Deen, noting that the second dose really threw him for a loop.
He got his second dose on a Friday morning and didn’t feel like himself for a week later, due to fatigue, swelling at the injection site, and his joints feeling inflamed. “It was brutal. But I know that [the third dose] is something I’m going to need, and I have no hesitancy whatsoever about getting it done.”
Encouraging Others Who Are Hesitant
Because Deen is immunocompromised and may have a lower response to the vaccine, he’s still a little fearful about returning to everyday activities in public settings.
“I just want to walk around in a bubble to protect myself from the world,” he says. “It seems like people want to satisfy their needs to go out, be with loved ones, and return to normal so badly that they don’t regard anybody else. No one seems to be taking into consideration [immunocompromised] people like me. We’re such a small segment of the population, but we’re still here.”
Having more people vaccinated would make him feel more protected, so he is doing his part to encourage others to get the vaccine, starting with other immunocompromised people, who would stand to benefit most from the protection.
Deen tries to compare the hesitancy around vaccines to the hesitancy some people feel when starting a new treatment for their chronic illness. He first points out that a lack of information or fears of the unknown may have kept a person from starting a new arthritis medication, but they ultimately took it to improve their symptoms and prevent complications. He’ll then ask if they had any side effects and if they still take the medication. If the answer to both is yes, he points out again that they took the medicine because it “helps you to have a better quality of life.”
“It’s the same way with the COVID-19 vaccine,” he says “Yeah, there’s not much information out there but we still need to [get the vaccine] because just like arthritis medication, it’s something that will help protect us.”
When talking to friends and family about the COVID-19 vaccine, Deen takes a simpler approach, reiterating that the vaccine doesn’t just protect them, but all the people they love — including him.
Though these conversations may be difficult, Deen says the open, honest, dialogue is helping him feel safe and supported during these shaky times.
“I basically say, ‘If you love me, and you want me around, to see you and hang out with you, you have to get your vaccine,’” he says. “I tell them, ‘I can’t come around you even with a mask on, because my anxiety levels are going to be so high that I will not be able to enjoy myself.’”
To access more of the resources that helped Deen feel informed and educated, join the Global Healthy Living Foundation’s free COVID-19 Patient Support Program.
Want to Get More Involved with Patient Advocacy?
The 50-State Network is the grassroots advocacy arm of CreakyJoints and the Global Healthy Living Foundation, comprised of patients with chronic illness who are trained as health care activists to proactively connect with local, state, and federal health policy stakeholders to share their perspective and influence change. If you want to effect change and make health care more affordable and accessible to patients with chronic illness, learn more here.
