What It Means to Be Immunocompromised, and Why It Matters

You may not realise it, but you probably know at least one person who is immunocompromised. Immunocompromised, or immunosuppressed, people are more vulnerable to infections and have a harder time fighting them off. You wouldn’t necessarily know it from looking at us, however.

Many health conditions and medications can cause someone to become immunocompromised. Perhaps you know one of the nearly 35 million Americans with diabetes, or one of the approximately 17 million Americans currently living with cancer (who are likely immunocompromised even if they are not currently undergoing treatment).

Or maybe you know an older person. Approximately 50 million Americans are over 65, and many are immunocompromised to some degree.

What it feels like to be immunocompromised

As one of the 25-50 million Americans living with an autoimmune disease, I’m immunocompromised because I take immune-suppressing medication to treat my symptoms.

Most of the time, however, immunosuppression is an invisible disability whose symptoms are similar to everyday stress: fatigue, sniffles, and gut issues. I’ve only been hospitalised a few times in my life as a result of immunosuppression, but I’m pretty sure that it helps explain why I tire easily and usually need a lot more sleep than my friends and colleagues.

In a society like ours that celebrates high levels of productivity, those of us who are immunocompromised can find ourselves at a disadvantage. If a colleague comes to work sick, we’re more likely to catch what they have. If we do catch it, we’re often out of work for longer. If we need more time than our colleagues to finish projects, we can be deemed lazy or unproductive even if we’re pushing ourselves to our max. I’m lucky to have a job I can do from home. However, many workers – especially low-wage essential workers – could lose their jobs if they don’t show up, or if they can’t keep up with the pace of production. It’s also easy to feel inadequate or like a burden when you can’t keep up – and it’s hard to ask for leeway when you often don’t look or act sick. And COVID-19 has taken the ever present level of risk immunocompromised people face to a whole new level.

There are other frustrations. Dating has never been easy for me, as I find myself asking if the physical intimacy is worth the risk of getting sick. I loved to travel solo before the pandemic, and I was extremely lucky to have one of the worst infections of my life while staying with friends and not stuck in an Airbnb. That said, a lot of the time, I feel just fine. Many of my friends with healthy immune systems (as far as they know) seem to get sick more often than I do – perhaps because I’ve always been diligent about avoiding infections.

Immunosuppression presents in different ways in different people, so my experiences are not universal. Some immunocompromised people are far sicker than me, and some far less. As the pandemic has revealed, however, immunosuppression can be a dangerous and, at times, debilitating condition that has not received enough attention, given how many Americans likely have some form of it. You might even be immunocompromised and not know it yet. Understanding how people become immunocompromised can help us better protect ourselves and each other from dangerous infections and create safer spaces for everyone.

How people become immunocompromised

The components of the immune system work together to accomplish two primary goals. First, they identify any foreign substances, known as antigens, that enter our body, from bacteria and viruses to splinters and other foreign objects. (In medical parlance, these substances are considered “nonself.”) Next, they eliminate or neutralise any antigens judged to be potentially harmful.

The immune system is complex and involves many parts of our bodies, from the skin that provides a barrier against the outside world, to the bone marrow, lymph nodes, and other organs where our immune cells are found. (Fun fact: more than half of our immune cells are located in our gut.)

People can become immunosuppressed as a result of medical conditions, or as a result of medications that they need to take, or a combination. (More about that in a minute.) Then, as we age, our immune system slows down. Immune cells become less skilled at distinguishing self from nonself, so autoimmune disorders become more common. Many cells and antibodies respond more slowly, enabling infections to enter and spread through the body more easily. Also, the body stops producing new B and T cells, so there are fewer cells to respond to new antigens.

When combined with other common conditions associated with old age like high blood pressure, heart disease, type-2 diabetes, and chronic kidney disease, it’s little wonder that older people are at such a high risk of having severe cases of COVID-19. (Incidentally, immune system changes may also be part of the explanation for why pregnant women are at higher risk of severe illness if they get COVID-19, though the science isn’t definitive.)

Medical conditions can cause a weakened immune system

HIV/AIDS is probably the most well-known condition linked to immune deficiency. It’s far from the only one, however.

Immunologists divide these immune deficiency disorders into primary and secondary types, depending on whether the cause is genetic or environmental.

Probably the most well known primary immune deficiency is severe combined immunodeficiency (SCID), thanks to the life of David Vetter, more commonly known as “the boy in the bubble.” Born with SCID in 1971, he grew up in a plastic sterile chamber that he only left a handful of times in a specially-designed suit made by NASA. David died of infection at the age of twelve in 1984; the bone marrow he received from his sister unknowingly contained the Epstein-Barr virus, which gave him lymphoma. Today, thanks to stem cell treatments, the survival rate for SCID is 94 per cent if caught within the first four months of a newborn’s life.

Secondary immune deficiency disorders are far more common – affecting millions rather than hundreds of thousands – and have a variety of potential causes. Besides infections like HIV that destroy immune cells, they also can also be triggered by diabetes, trauma, radiation, and malnutrition. Of these, malnutrition is by far the most common worldwide.

And then there are autoimmune diseases, which affect somewhere between 24 million to 50 million Americans. Autoimmune diseases are illnesses in which the immune system erroneously attacks healthy cells in the body, causing inflammation. Symptoms vary widely depending on the type of illness and where the inflammation occurs.

Lupus, inflammatory bowel disease, and rheumatoid arthritis are among the most well-known autoimmune diseases, but there are more than 80 others.

The causes of autoimmune disease remain a mystery. There appears to be some kind of genetic component, but environment also seems to play a role. Some diseases appear to follow certain infections: some psoriasis cases have occurred after strep throat infection, whereas scleroderma, which tightens and hardens the skin, sometimes develops after cancer treatment. 80 per cent of those diagnosed with autoimmune disease are women (a statistic that some doctors believe points to a hormonal role). In my own case, I have a family history that includes ulcerative colitis, irritable bowel syndrome (IBS), and even colon cancer.

Autoimmune disease diagnoses have been steadily rising, especially in Western nations. It’s as yet unclear if this increase is due to improved diagnostics methods and greater awareness, or if there are actually more incidents of illness.

On the flip side, conditions like asthma, eczema, and allergies are caused by an overactive immune system. Unlike autoimmune illnesses, which attack healthy cells within the body, overactive immune system conditions attack normally harmless nonself things.

Some medications weaken the immune system

Some conditions, including autoimmune and overactive immune diseases, are treated with immunosuppressive medications.

Some of the most well-known general immunosuppressants include corticosteroids like prednisone, hydroxychloroquine (best known for treating or preventing malaria – — NOT for any effectiveness against COVID-19), and sulfasalazine. The primary side effect of these drugs is a heightened risk of infection, but some can cause other serious side effects, like liver and kidney damage, or they can affect your bone health or blood pressure.

Another category of immunosuppressants is biologics, which are made not of chemicals like the drugs above but of biological substances, often proteins. You might recognise familiar brand names for these medications like Remicade, Humira, and Stelara. Biologics do not carry a higher risk of infection, but they have their own side effects. Some require that patients take antibiotics, and many caution against taking live vaccines, like the one for measles, mumps, and rubella.

Chemotheraphy drugs are also immunosuppressants, but with chemotherapy, immune suppression isn’t the goal; it’s an unfortunate side effect. Cancer cells are so hardy that the dosage needed to kill them kills many healthy cells — including immune cells. As a result, cancer patients undergoing treatment are among the most immunocompromised members of society. Radiation is more targeted than chemotherapy, but it still can have both short and longer-term immunosuppressive effects, especially if it targets the bone marrow. And finally, most people who have donor organs must take immunosuppressive medications for the rest of their lives to prevent the body from rejecting them.

How many people are immunocompromised?

Unfortunately, we don’t have a lot of data on the demographics of immunosuppression. The latest data comes from a 2016 CDC study that concluded that 2.7% of the adult population, or 8.5 million Americans, have either been told by a physician they are immunocompromised, or are taking an immunosuppressive drug. But the actual number of immunocompromised adults is almost certainly higher.

For example, the study concluded that women, white people, and those aged 50-59 are the demographics most likely to be immunocompromised. But we know that women are more likely to consult physicians and report symptoms than men and may therefore be more likely to be diagnosed. More significantly, the cost of healthcare and racism in medicine discourages many minorities from seeking care. When they do, they are often not taken as seriously as their white counterparts.

What this all has to do with COVID risk

On December 23, 2020, the CDC released updated guidelines on its “People with Certain Medical Conditions” COVID-19 page. People with cancer, chronic kidney disease (CKD), heart problems, pregnancy, and immunosuppression from organ transplants (among other things) “are at increased risk” of severe illness. However, people whose immunosuppression stems from blood or bone marrow transplants, immune deficiencies, HIV, and immunosuppressive medications now only “might be at an increased risk.”

In short, the available data hasn’t definitively shown that immunocompromised people develop severe COVID more often than people with healthy, functioning immune systems. In theory, this is encouraging. In practice, I’m still acting as if contracting COVID-19 would be a death sentence. I’ve been in near complete isolation with my parents since March; aside from two haircuts and a couple of doctor’s visits, I haven’t entered another building. Not all immunocompromised people will feel the need to be this careful, of course, and some cannot be.

I will feel much safer when I am vaccinated. While some immune suppressing medications and immune conditions prohibit taking live vaccines, the COVID-19 vaccine isn’t live. The biggest question surrounding the COVID vaccine for immunocompromised people is efficacy. Vaccines work by stimulating your immune system to produce antibodies that will recognise and fight an infection. If you have a weaker immune system, your body will likely produce a weaker response. While some vaccine trials recruited people with HIV and autoimmune diseases, most did not isolate the data to enable definitive conclusions about these populations.

That said, a bevy of medical organisations, including the American College of Allergy, Asthma, and Immunology; the American College of Rheumatology; and the National Psoriasis Foundation COVID-19 Task Force, all urge immunocompromised people to get the vaccine unless they have a known allergy to any ingredients.

Put simply, the possible consequences of the vaccine are far less worrying than the possible consequences of getting COVID-19. From my perspective, it’s a risk well worth taking — just like the decision I’m making every day when I take my immunosuppressants. My medication increases my risk of infection, yes. It even carries the very slim risk of contracting a rare, lethal form of lymphoma. Still, these risks are preferable to the active symptoms of my disease and how it can affect my life: severe diarrhoea, cramps, severe fatigue, difficulty eating healthy foods like raw fruits and vegetables, among others. The pandemic has made me more aware of my vulnerability, and yeah, it sucks. For me, though, having a flare of ulcerative colitis would suck far more.

Not everyone who is immunocompromised has the kind of choices and privileges I do, to work from home and even to contemplate stopping my medication. (I didn’t.) I wear masks and stay home for myself, sure, but I also do it for those people more vulnerable than I. I hope you are, too.