The COVID-19 vaccine is finally here, and ramping up quickly. More than two million doses are being administered daily, expected to reach three million soon thanks to the new Johnson & Johnson vaccine approval.
The chance to get vaccinated is a shot of hope for many Americans. All three vaccines have been thoroughly studied, deemed safe, and continue to eliminate virtually all serious illness and death in vaccinated individuals. This startling fact bears repeating: of the 750,000 people involved in studies for the five vaccines (only 3 of which have been approved), NONE died and only a few were hospitalized, none of whom remained in the hospital a month after vaccination. These statistics are even better than the highly-publicized 95% efficacy of the Pfizer and Moderna vaccines (which means 95% of those vaccinated were completely protected from infection).
While all of this is wonderful news and will save countless lives, it is also complicated. Who is able to get vaccinated — due to eligibility criteria, access to vaccination sites, and understandable mistrust of medical establishments within certain communities — has so far lacked in equity. Additionally, in states determining eligibility by age and/or profession, many immunocompromised patients, while at high risk of contracting COVID-19, are still not eligible for vaccination.
For those of us with chronic illness and disability, many aspects of the vaccine come with complications. We reached out to our Friends in the Fight to hear the concerns facing our community:
Many with immune deficiencies have spent this year extremely isolated, and may now feel resentment at not being eligible for a vaccine. As one Friend in the Fight put it,
“It was hard for me to see some of my healthy friends getting the vaccine before me, but also knowing I was happy for them too. Yes, they have had more exposure but I have been hiding in my apartment the whole year and they have been seeing people freely because they don’t have the same fear for their health as people with chronic health issues.”
It may also feel scary, after months of staying home, to enter a crowded public space and risk exposure. This is a valid concern! Wearing a mask (or two!), staying at least six feet away from others, and speaking up if someone else isn’t well masked, can help reduce your exposure and increase your comfort level.
Another concern among immunocompromised patients is whether their immune systems will even mount an adequate response to the vaccine. This is a question for your physicians, although data is showing that most immunosuppressant medications do not significantly reduce your response to the vaccine (see below).
People with a history of anaphylaxis, bad reactions to other vaccines, or conditions like Mast Cell Activation Syndrome may have concerns about the vaccine itself. Will it cause an anaphylactic reaction? Will the normal side-effects be more extreme because of these preexisting conditions?
Thankfully, data so far is showing that the vaccine is actually well tolerated in people with mast cell disorders! Organizations for specific diseases are putting out their own recommendations (like this very helpful page from the Mast Cell Disease Society). In general, those worried about allergies or mast cell responses to the vaccine are encouraged to premedicate with an H1 blocker (like Zyrtec or Benadryl), stay 30 minutes afterwards for observation, and if possible receive the vaccination in a location where medical treatment could be provided if needed. Remember to have any other treatments or epipens available just in case, and to provide peace of mind.
For the unfortunate, yet very normal, vaccine side effects, remember that these are simply your body working hard to create antibodies and keep you safe!
autoimmune conditions and immunosuppressants
I attended a virtual conference put on by the Association of Autoimmune Related Disorders in which patients could send questions to be answered by a panel of experts. Check out the organizations related to your conditions to see if you can attend a similar event. The main takeaways were that folks with autoimmune disorders are at higher risk from COVID-19, and are not at risk from the vaccine. They highly encouraged all autoimmune patients to get vaccinated and to reach out to their doctors with questions and concerns.
One concern voiced was whether taking immunosuppressants would impact the vaccine’s effectiveness. While we don’t yet have data to answer this from the COVID vaccines, studies from other viruses are being used to offer recommendations. A physician panelist broke down each class of medications: Most had positive recommendations, that there’s no need to stop medication when getting vaccinated. The main exception, abatacept for rheumatoid arthritis, may need to be held for a week before vaccination. Also, B-cell depleting medications may affect the vaccine’s effectiveness at stopping you from spreading COVID-19, although it will still protect you against severe illness. As always, if you have concerns about your particular medications, make sure to ask your medical team.
Another concern was whether the vaccine itself could cause a flare up of autoimmune symptoms. Autoimmune patients were not included in vaccine trials, so we don’t know yet. There are studies happening now, however, so if you would like to help answer this question for future patients, ask your doctor about being included!
ME/CFS and POTS
All three available vaccines are fantastic at preventing serious illness and death. What about long-term COVID? As we learn more about “COVID long-haulers,” conditions like POTS and ME/CFS seem to be involved. For patients who already have these, or similar, diagnoses, does this mean we are at higher risk of long-term COVID? Patients with other conditions that may be affected by inflammation, such as EDS and other connective tissue disorders, have also voiced concerns about long-term effects of COVID-19. Even if the vaccine prevents death, could we still end up with worsened symptoms for the rest of our lives?
We won’t have access to these answers for many months, until we see the prevalence of long-haulers among the vaccinated. It may still be worth getting the vaccine to prevent serious illness and complications, but it is important to still take precautions to avoid infection at all — avoid crowds, stay six feet from others, and mask up! And remember, just because someone else is vaccinated does not necessarily mean that they can’t spread the virus.
accessibility at vaccine centers
One concern voiced by our vaccinated Friends was that the sites themselves were not always accessible. One patient with POTS described being expected to stand for half an hour while waiting for her shot because there were no chairs available (a feat that many POTS patients would find near-impossible). Ask others who have been vaccinated in your area what the experience was like, and consider calling ahead to ask additional questions. Plan ahead and bring whatever gear might help you through the experience — mobility aids, folding chair, water bottle, layered clothing… If you do encounter a situation that does not feel accessible, consider reporting it so that the experience can be improved for your next shot, or for other Friends in the Fight down the line.
pregnancy and infertility
Another complicated concern around the vaccine is pregnancy. Being pregnant reduces your immune system, so pregnant individuals are at higher risk for contracting COVID-19, which can cause serious pregnancy complications. With so much at stake, getting the vaccine is extra important! It’s not that simple, unfortunately, because pregnant women were not included in the vaccines’ safety trials. We don’t have enough data yet to ensure that the vaccine won’t cause pregnancy complications. That said, the American College of Obstetricians and Gynecologists (ACOG) is recommending pregnant women get vaccinated because the benefits far outweigh the risks. Additionally, getting vaccinated while pregnant — or even breastfeeding, to a lesser degree — will likely give your baby immunity! Antibodies you create in response to the vaccine can pass through the placenta or breast milk and protect your baby. That being said, you should talk to your pregnancy team if you have concerns and be sure to share any conditions you have that may increase your vaccine side-effects.
Infertility, a common concern within the chronic illness community, has been another source of vaccine anxiety. On this note you can rest assured — the vaccines do not cause any infertility. This was simply a scare caused by misinformation.
additional advice from Friends in the Fight
The bottom line is that this is your call, and it may be a complicated one!
Make your decision before you are eligible, so that you’re ready when the time comes.
Remember that these vaccines have been studied with much larger trials than many of the medications we take daily.
Ask your doctor if you may be eligible before you think, for example recovered cancer patients may be considered “current” if still on medications.
If getting vaccinated, make a plan to allow rest and self-care afterwards, in case your body’s response is difficult.
Want to be part of a community that gets it? Join our Friends in the Fight facebook group!