- Though it can feel like the entire world has moved on from COVID-19, many immunocompromised Americans still face a high risk for severe illness and death from the virus.
- A new campaign called Up the Antibodies seeks to give these individuals and their families information and resources to feel safer.
- Everyone can take steps to make life more livable for all individuals.
When stay-at-home orders went into effect around the U.S. to slow the spread of COVID-19 in March 2020, people suddenly understood what life has been like for Emily V. Gordon and her husband, Kumail Nanjiani, for nearly two decades.
As detailed in The Big Sick, a romantic comedy the two wrote and loosely based on their relationship, they had been dating for less than a year when Gordon was diagnosed with adult-onset Still’s disease in 2006. The rare condition is considered a primary immunodeficiency disorder.
Then in 2017, doctors diagnosed Gordon with common variable immunodeficiency.
Though she’s received treatments, even low-grade illnesses remain a risk.
“That feeling that a lot of able-bodied people felt in March of 2020 — ‘Oh no, we can’t go around. We can’t be around people. They could hurt us’ — some of us live in that place,” Gordon says.
Though people may have lived in that place in March of 2020, many Americans have moved on, peeled back their masks, and resumed attending weddings and birthdays.
Nanjiani has recently turned down invitations to both, including his father’s 75th birthday. Though Nanjiani and Gordon have remained more isolated than the general population, they’re not alone.
Dr. Naomi Jean-Baptiste, the CEO and founder of Hope4Med, says roughly 3% of the U.S. population is moderately or severely immunocompromised. For them, COVID-19 remains a deadly threat, regardless of vaccination status.
This reality can be isolating.
“Diseases are invisible enemies, and you never know who might be carrying a disease which could be fatal to you,” Jean-Baptiste says. “It can potentially turn into a life and death issue for immunocompromised individuals, not just minor cold or flu-like symptoms.”
But Gordon wants to live life again, and she wants other immunocompromised people to feel safer, too. However, what that means can vary and become confusing. Because of this, Gordon and Nanjiani were inspired to participate in the Up the Antibodies campaign with AstraZeneca, a resource for immunocompromised individuals to find information on therapies and treatments.
The couple and several healthcare providers discussed life for the immunocompromised and what everyone can do to help keep this vulnerable population physically and mentally safe.
Throughout the pandemic, commentators have used the phrase “severely immunocompromised” when discussing COVID-19 risk. The term is vague and typically used in sentences like, “People should feel comfortable getting together indoors for the holidays — except for the immunocompromised.”
What qualifies as immunocompromised?
Jean-Baptiste says individuals who fall under this umbrella term may have:
- advanced or untreated HIV
- received an organ transplant
- primary immune deficiency (moderate to severe)
- AIDS or people with severe primary immunodeficiency disorders or diseases
Vaccines typically protect people without severely compromised immune systems from the worst outcomes: hospitalization and death.
A small 2021 study of 1,210 participants indicated that of the 45 breakthrough infections requiring hospitalization, 20 (44%) were immunocompromised. Forty-four of the 45 breakthrough infections were in individuals over 50.
Another CDC report indicated that 12.2% of adults hospitalized for COVID-19 were immunocompromised. Unvaccinated patients with compromised immune systems were more likely to be hospitalized.
New boosters were released this month to combat the recent Omicron variant, hoping to provide people without compromised immune systems with added protection and confidence heading into the fall and winter. But it’s unclear how much confidence people with severely compromised immune systems — and those who live with them — can have after receiving this booster.
It wasn’t tested on any humans, just mice, let alone the severely immunocompromised.
“Truthfully, any infection, including COVID, can be deadly,” Jean-Baptiste says. “Vaccinations do not provide 100 percent protection even in people who are not immunocompromised. Now, if you are severely immunocompromised, sometimes your immune system will not even be able to create the ideal response to the vaccinations.”
Though Jean-Baptiste says it’s not a guarantee that a body can create the ideal immune response from vaccination, she still recommends individuals with severely compromised immune systems stay up to date with booster shots.
- wearing a well-fitting, high quality mask, like an N-95
- avoiding crowded, indoor settings and poorly ventilated buildings
- improving ventilation in indoor environments by opening windows to allow fresh air to circulate
- wash hands with soap and warm water for at least 20 seconds and thoroughly rinse and then dry them
It gets complicated, though. Not all conditions that lead to compromised immune systems are the same, and individuals react differently to COVID-19. These individuals are typically instructed to speak with their doctors, who also often can’t provide definitive answers on their risk of getting COVID-19 and experiencing the worst outcomes.
“There is no research on how the vaccine would affect [people with the condition I have],” Gordon says. “The medical advice I got was, ‘Let’s see what happens,’ and a shrug. And that was people doing their best.”
Gordon recently began taking long-acting monoclonal antibodies after consulting with her doctor. You may have heard about monoclonal antibodies as a treatment once someone has contracted COVID-19. But long-acting monoclonal antibodies can be given preexposure in two specific cases, including for individuals with severely compromised immune systems.
Authorized for emergency use by the FDA in 2021, the therapy blocks the virus from getting into human cells and replicating. It’s administered in two separate doses and is only available to two specific populations:
- The severely immunocompromised, who cannot mount an ideal immune response to the vaccine. (However, these individuals should still remain up to date on vaccination and boosters, according to the FDA.)
- People with a history of adverse reactions to the vaccine (or components of it) who cannot take the vaccine.
The FDA says that individuals who received the therapy reduced their risk of developing COVID-19 by 77% compared to people in the placebo group in a primary analysis.
“It’s a suit of armor that I am trying to build so I can keep myself safe, go out, do things, and live life,” Gordon says.
But awareness of the therapy remains low, even in the medical community, says Dr. Dorry Segev, director of the Center for Surgical and Transplant Applied Research at NYU Langone Health. He hopes the campaign, which also includes a public service announcement from actor Jeff Bridges, who has had cancer and COVID-19 over the last two years, brings more awareness to the option in addition to giving immunocompromised more tools to advocate for themselves and stay safe.
“Be aware [of] the options that are available to you,” Segev says. “You may be aware of something that you heard about from other immunocompromised people that your own doctors have not yet heard about and have that as a dialogue.
During a virtual event to promote the Up the Antibodies campaign, some panelists joked that not taking precautions would lead people with compromised immune systems to “get sick and create new variants.”
It was a tongue-in-cheek, laugh-to-keep-from-crying moment. But Segev says it’s true. The more the virus circulates, the greater the likelihood for more variants that can evade current vaccinations.
What’s more, even people who don’t have compromised immune systems themselves may be connected with them. Family members, co-workers, and the person you sit next to on the bus multiple times per week may have health conditions that make COVID-19 more dangerous, and you may not always know about it.
Nanjianisays it’s important to remember we’re all in this together.
“The idea that we only care about ourselves is harmful,” Nanjiani says.
But he also understands that people want to move on and reclaim normalcy. Can there be a compromise?
Dr. Jennifer Tseng, FACS, a medical director of breast surgery and a double board certified surgical oncologist at City of Hope Orange County in Irvine, California, says a few steps can make life safer for immunocompromised people.
It can also benefit everyone by reducing the risk of vaccine-evading variants. These mitigation efforts include:
- wearing a mask before and during in-person meetings
- testing the same day you make contact
- getting vaccinated and boosted
- practicing good hand hygiene
And Jean-Baptiste agrees with Nanjiani: In public, it’s often unclear who is immunocompromised.
“Since it may not be obvious who is immunocompromised or not, treating everyone like they might be immunocompromised is the best way for others to help,” she says.
This means taking precautions, such as wearing a mask in public indoor settings around strangers, as a best practice.
COVID-19 mitigation efforts have become individual risk assessments. Government mandates in schools and businesses have been lifted in all 50 states and at the federal level.
The CDC recommends contact tracing only for healthcare and some high-congregate settings. Connor says a ramped-up contact tracing effort would be safer.
“If you don’t want to enact wide-sweeping policies like what occurred back in March 2020, then this is the way to do it,” Connor says. “Catch infections early before they spread throughout the local community, state, country, and world.”
Action taken during times of high levels of transmission communities could also keep individuals with severely compromised immune systems at lower risk for contracting and experiencing the worst outcomes of the virus.
“[These include] stronger recommendations or requirements for wearing well-fitting and high quality masks indoors,” Jean-Baptiste says.
Jean-Baptiste also emphasizes the need for upgrades to ventilation systems. In March, the Biden Administration provided a fact sheet on ventilation as part of the National COVID-19 Preparedness Plan.
The sheet included recommendations for improving air quality, such as bringing in outdoor air and using central HVAC systems to enhance air filtration. It encouraged governments to use money from the 2021 American Rescue Plan but did not announce any new rounds of funding on the horizon.
Jean-Baptiste believes additional resources and funds for these upgrades would increase safety in indoor spaces.
The fear of physical harm is only part of the issue facing immunocompromised people and their loved ones as they try to chart a path forward. Nanjiani teared up as he spoke about missing milestone events. Gordon has felt forgotten about.
“It’s just a bummer to be in a small number and not being heard or feel like you are being seen whatsoever,” Gordon says.
The rollback of precautions hasn’t helped, Tseng says. There’s pressure to return to normal and get back to the office, but the lack of measures makes it unsafe. It adds to the need to think about risk management, an emotional load people without compromised immune systems don’t appear to be carrying as heavily anymore.
“Work-from-home options have become less flexible, and public transit is almost always mask-free,” Tseng says. “For those still at high risk, it is not as easy — or as safe — to simply jump into this post-pandemic world.”
The polarizing nature of the pandemic has also upset Nanjiani, someone without a compromised immune system who consistently puts his wife first.
“I’ve seen the selfishness behind this idea of personal freedom…the idea that rugged individualism ultimately means being selfish and not caring about the people around you,” Nanjiani says.
He says it’s been mentally exhausting, but staying emotionally healthy is also essential.
Nanjiani started therapy for the first time during the pandemic and encourages others to do the same. Gordon also suggests surrounding yourself with people who respect your boundaries.
Tseng also calls on individuals lucky enough to have a healthy immune system to be respectful — COVID-19 remains a threat to many. Respecting their journeys and boundaries, such as the need to test before meeting in person, is critical.
“Not everyone is getting back to normal, and those who are severely immunocompromised may be feeling socially isolated,” says Tseng. “We all became very good at staying in touch with each other virtually during the pandemic, so continue to have those conversations with people who need to limit their in-person interactions.”
Gordon also wants to move on to some version of a new normal, and she hopes others can do the same in their own time.
“The way for me to stay completely healthy is to stay in my house forever,” Gordon says. “I am not interested in that. I am interested in finding the balance in a life that I can lead that is engaging, enriching…and work…that also keeps me as healthy as I am possibly able to be. I don’t want to live in fear.”
Mostly, she says she just wants to feel seen and cared for as she continues to chart a path forward.
“I’m not looking for sympathy, but a little bit of empathy would be lovely,” Gordon says.