Sara Adams hasn’t seen her mom in a year and a half. She misses her younger cousins. And she wants to go back to museums.
Despite being fully vaccinated, she hasn’t joined the millions of Americans enjoying joyful reunions or returning to a version of “normal.”
She is among the 3 to 4 percent of the U.S. population for whom the vaccines may not be fully effective, if at all.
Adams has ankylosing spondylitis, a rare form of autoimmune arthritis. She was diagnosed four years ago when she was 19 and takes an immunosuppressant. It’s still unknown how vaccines work for people with such diseases, as well as those with HIV, recipients of organ transplants, cancer patients and others whose immune systems may be challenged.
As reported on Thursday, a federal advisory panel is expected next week to consider whether patients with compromised immune systems should receive coronavirus booster shots.
“It’s kind of stressful, because I don’t know if my vaccine worked,” Adams said. “I haven’t felt safe going to museums now that masks aren’t required for everyone anymore. Masks are still required in L.A. for unvaccinated people, but it’s not clear how anyone is enforcing that.”
“We don’t know if we can unmask or be in crowds and not endanger ourselves, especially with the newer variants. Exposure to unvaccinated family members may put us at risk, though we miss them dearly,” Adams said.
“It’s very important to talk about the immunocompromised, because they are feeling really left behind,” said Monica Gandhi, a professor of medicine at the University of California at San Francisco who specializes in infectious diseases.
Gandhi is a proponent of potentially offering a booster shot to immunocompromised people, a practice she calls “standard” for other vaccinations like the flu. She recommends still wearing masks if your immune system is vulnerable.
“The best part about a mask is it protects you. It doesn’t just protect others,” Gandhi said.
When people talk about being vaccinated or not, or masking or not, Gandhi encourages those who do feel protected by their vaccinations to be mindful of binary language and conditions that can be exclusive to those who are already anxious.
And remembering that for those with immunity issues, a mild infection could very easily turn severe.
Marie Mathews works in regulatory affairs at a major pharmaceutical company but is currently on medical leave. She says her oncologist and immunologist think she has cancer cells in her bone marrow, or abnormal plasma cells.
“I have mutations that are like cancer, but they don’t technically call it cancer until you hit a certain level,” the 54-year-old mother of two said. That means her immune system is compromised.
Mathews is still wearing masks and lives in an area of Atlanta where others are continuing to mask as well. She’s grateful that she’s not harassed or mocked for wearing them.
“I’m in a bubble, and I am curious how it’s going to be to leave the bubble if I have to travel or if anyone’s going to complain if I wear a mask,” she said.
Her life is still pretty isolated: She keeps a tight circle and she has spent a lot of the past year suffering from frequent infections. She says her workplace has been very supportive as she has dealt with her diagnosis.
One thing she misses is the gym.
“I need it for my conditioning to rehab. I’m trying to get back in shape after all the bedtime from the infections, but I'm too afraid,” she said. “I can't stay healthy in there. So that's a bummer. Your immune system needs exercise to be healthy. I’m having a hard time getting the conditioning I need.”
For Gillian Ladd, who lives in San Francisco, the situation is different. After suffering from Type 1 diabetes, the 48-year-old is a double organ transplant recipient — she got a new kidney and pancreas in February 2018. Eight years ago, after her sister was diagnosed with breast cancer, she found she had the BRCA1 gene and got a prophylactic double mastectomy, hysterectomy and bilateral salpingo-oophorectomy to remove both ovaries and both fallopian tubes.
Ladd, a former canine consultant, isn’t working. She spends a lot of time advocating for herself and other people with immune conditions and disabilities. The pandemic has just magnified her existing concerns.
Sometimes she meets with a close friend in her backyard who knows about her condition. She said she has lost or cut off other friends because of how recklessly they behaved during the pandemic.
“I’ve been in a holding pattern,” she said. “It’s really stinky because I got this transplant — it was supposed to give me a second chance at life. And instead, it feels like I’ve just been even more cloistered than before.”