If we’re not in this group, we know someone who is. My journey these past couple of weeks has taken me through several doctors’ offices, both in person and virtual. All in person visits have required masks until further notice. No big deal!
Thank goodness all the prognoses have been favorable for me. I’m a cancer (leukemia) survivor, so no “minor” victories exist; they’re all major ones. In between visits I have to be especially careful due to the cancer treatments I take. I’m okay but, perhaps like you, I am immunocompromised.
Thus far, COVID-19 has been a non-factor for me; yet I am fully vaccinated and twice boosted. I take no chance. When I recently came upon an article by a Vox contributor about concerns for the immunocompromised, I took note and wanted to pass it along to you.
My apologies if this appears to be a lengthy blog post; it probably is. However, with respect, pay attention; your health depends on it (no pressure!).
Fredrick Wilson, a spine doctor at the Cleveland Clinic, was asleep at home in June 2020 when he had a massive heart attack that destroyed more than three-quarters of his heart tissue. He was lucky to survive the ambulance ride to the hospital.
Until then, Wilson, now 66, had been a healthy cyclist who took no prescription drugs. But after the attack, he needed a heart transplant, and with it, 33 pills to swallow a day, including powerful immunosuppressants to prevent his immune system from attacking his transplanted heart. These drugs help keep his new heart pumping, but they also make it harder for his body to fight off infections. They put him at high risk for both catching Covid-19 and having severe outcomes from the infection.
As Covid-19 stutters into endemicity, the more than 7 million Americans with weakened immune systems, including Wilson, are left making hard choices that others don’t face. He feels conflicted: He misses taking care of his longtime patients and teaching junior colleagues his craft. But he’s also afraid to die from Covid-19 after such a miraculous survival.
“Every time I go to the office, I’m going to feel some risk involved, and I’m not really that comfortable with it,” he said. But, he added, “I’m just not ready to stop seeing patients just yet.”
Even for a doctor, making decisions as an immunocompromised person is difficult — especially now. There’s no obvious guidebook for this group, in part because immunocompromised states are almost as diverse as the individuals who cope with them. While the risks associated with these conditions are not uniform, many immunocompromised people are now making decisions under a blanket of fear.
Helping people with weakened immune systems navigate this stage of the pandemic means recognizing that the group contains a large spectrum of risk — but even those at more risk now have tools that allow them to be proactive about their safety, and both individual and collective actions can help protect them.
There’s a wide spectrum of risk among immunocompromised people
It’s really hard to assess the exact risk an immunocompromised person faces. That’s partly because “immunocompromised” is a catch-all term for a complex group of conditions. The immune system consists of many interrelated parts, and weaknesses in different components of it can lead to different levels of risk.
“It’s not like there is a clear category of ‘you’re immune compromised’ and ‘you’re not at all’ — there’s a gradient,” said Dimitri Drekonja, an infectious disease doctor at the University of Minnesota.
Immune systems can be weakened in different ways — via disease, such as advanced or untreated HIV; by treatments for certain medical conditions, such as medications used to treat rheumatoid arthritis, multiple sclerosis, and some cancers; or by medications that target normal immune systems in transplant patients, to prevent them from attacking new organs, or immune system components, such as in stem cell transplants.
When it comes to Covid-19, the important question for immunocompromised people is whether their immune system’s specific vulnerability places them at higher risk for either infection with or severe disease due to the coronavirus.
Immunocompromised people, overall, are thought to be at particular risk for Covid-19 because the SARS-CoV-2 virus is so new, said Christine Koval, who leads the transplant infectious disease team at the Cleveland Clinic.They’re also at relatively higher risk for severe outcomes from common cold and flu viruses, but their immune systems have encountered these viruses before. SARS-CoV-2 is too new for their immune systems to offer much protection against it.
The data is mixed on which immunocompromised people face the greatest danger when it comes to Covid-19, in large part because many in this group are older or have other medical conditions that raise the risk of severe disease.
Experts generally agree Covid-19 risk is elevated for people with cancers of the blood or immune systems (like leukemia, lymphoma, and multiple myeloma), lung cancer, advanced or progressive cancer, recent stem cell transplants, and advanced or untreated HIV. Those actively receiving chemotherapy that reduces bone marrow activity and people with some primary immunodeficiencies are also in the highest-risk category.
The CDC’s “moderately to severely immunocompromised” designation, created largely for the purposes of allocating Covid-19 vaccines, includes these high-risk categories. But it also includes more ambiguous ones, including people taking other immunosuppressive medicines and those who have received organ transplants, conditions whose risk scientists don’t understand as well.
Researchers have not yet developed a unifying theory to explain why certain immunocompromised states raise the risk from Covid-19, but many have proposed an important role for B cells. These immune cells are responsible for producing the antibodies key to the immune system’s sentinel function, which identifies invading germs and signals the need for a counterattack.
That makes them critical to the body’s defenses against new pathogens; because people taking medicines that dampen these cells’ activity have a less robust vaccine response and higher risk for severe infection or death when it comes to Covid-19, scientists think there is a relationship between B cell function and risk.
When a medical condition or treatment weakens the entire immune system, it also weakens B cells; that could explain why people with blood cancers, stem cell transplants, and advanced HIV are at higher risk.
However, B cell dysfunction doesn’t explain all of the risk immunocompromised people face, said David Hafler, a neurologist and immunobiologist at the Yale School of Medicine. In some people with weakened B cells (for example, those who take the prescription medication rituximab) other parts of the immune system seem able to pick up the slack — but not in everyone.
Ultimately, that makes it hard to sort individuals definitively into risk categories.
Hafler attributes some of this variability to the “immune lottery” — that is, the role of genetics in determining individual strengths and vulnerabilities in each person’s defenses. “Everyone has a different immune system,” he said, which makes it hard to ascertain why some people have severe Covid-19 infections while others do not, without understanding underlying genetic differences.
(It is possible to test for the presence and level of SARS-CoV-2 antibodies in the blood, which are products of the immune system’s defense against the virus. But these tests don’t tell you how protected you are — or are not — from an infection.)
Megan Ryan, an advocate for people with primary immunodeficiencies, who herself has common variable immunodeficiency, said the individually variable nature of immunocompromised states makes it particularly important that higher-risk people get their information from health care providers who know them — not from the public square.
“It is a confusing time,” she said, “because there’s a lot of people who are either experts or self-proclaimed experts — there’s just a lot of voices in the system.” She recommended seeking medical advice from the health care team that knows you best “rather than crowdsourcing an answer,” she said.
That’s also the best advice for people concerned they have an undiagnosed immune system problem: Get evaluated by a health care provider — ideally, one who knows you well.
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