What It Means to Be Immunocompromised and Why It Matters
You may not be aware of this, but you probably know at least one immunocompromised person. People with weakened or weakened immune systems are more vulnerable to infections and more difficult to fight off. However, you may not necessarily recognize this by looking at us.
Many health conditions and medications can weaken your immune system. You may 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 to have weakened immune systems, even if they are not currently receiving treatment).
Or maybe you know an older person. Roughly 50 million Americans are 65 years of age or older, and many are immunocompromised to varying degrees.
What it feels like to be immunocompromised
I am one of 25-50 million Americans with an autoimmune disease, and I have a weakened immune system because I take immunosuppressive drugs to treat my symptoms.
However, in most cases, immunosuppression is an invisible disability, the symptoms of which are similar to everyday stress: fatigue, a runny nose, and bowel problems. I’ve only been hospitalized a few times in my life for immunosuppression, but I’m pretty sure it helps explain why I get tired easily and usually need a lot more sleep than my friends and colleagues.
In a society like ours where productivity is high, those of us with weakened immune systems may be at a disadvantage. If a colleague comes to work sick, we are more likely to be infected with what he has. If we do catch this, we will often be out of work for a long time. If we take longer than our peers to complete a project, we may be considered lazy or unproductive, even if we try our best. I am fortunate to have a job that I can do from home. However, many workers, especially low-paid basic workers, may lose their jobs if they do not show up for work or keep pace with the pace of production. It’s also easy to feel inferior or 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 faced by immunocompromised people to a whole new level .
There are other disappointments as well. Dating has never been easy for me, as I wonder if physical intimacy is worth the risk of getting sick. I loved traveling alone before the pandemic, and I was very lucky to have had one of the worst infections of my life while staying with friends and not getting stuck on Airbnb. However, I feel great most of the time. Many of my friends with healthy immune systems (as far as they know) seem to get sick more often than me – perhaps because I’ve always tried to avoid infections.
Immunosuppression manifests itself differently in different people, so my experience is not universal. Some immunocompromised people are much worse than me, and some are much worse. However, as the pandemic has shown, immunosuppression can be a dangerous and sometimes debilitating condition that gets neglected given how many Americans are likely to have it in one form or another. Perhaps you even have a weakened immune system, and you still do not know about it. Understanding how people become immunocompromised can help us better protect ourselves and each other from dangerous infections and create a safer space for everyone.
How people become immunocompromised
The components of the immune system work together to achieve two main 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 terms, these substances are considered “foreign.”) They then eliminate or neutralize any antigens that are considered potentially harmful.
The immune system is complex and includes many parts of our body, from the skin, which provides a barrier against the outside world, to the bone marrow, lymph nodes, and other organs where our immune cells reside. (Fun fact: More than half of our immune cells are found in the gut.)
People can develop immunosuppression as a result of illness, medication they need to take, or a combination of the two. (More on that in a minute.) Then, as we age, our immune systems slow down. Immune cells lose the ability to distinguish themselves from others, which is why autoimmune disorders are becoming more common. Many cells and antibodies react more slowly, making it easier for infections to enter and spread throughout the body. In addition, the body stops producing new B and T cells , so fewer cells respond to new antigens.
When combined with other common conditions associated with old age, such as high blood pressure, heart disease, type 2 diabetes and chronic kidney disease, it is not surprising that older adults are at such a high risk of developing severe cases of COVID-19. (By the way, changes in the immune system could also be part of the explanation for why pregnant women are at a higher risk of severe illness if they contract COVID-19, although the science is not conclusive .)
Diseases can weaken the immune system.
HIV / AIDS is probably the most well-known immunodeficiency disease. However, he is far from the only one.
Immunologists classify these immune deficiency disorders into primary and secondary types, depending on whether the cause is genetic or environmental.
Probably the best known primary immunodeficiency disorder is severe combined immunodeficiency (SCID) , thanks to the life of David Vetter , better known as the “bubble boy”. He was born with SCID in 1971 and grew up in a plastic sterile chamber, which he left only a few times in a suit designed 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 caused his lymphoma. Today, thanks to stem cell therapy, the survival rate for SCID is 94 percent if found within the first four months of a newborn’s life.
Secondary immunodeficiency disorders are far more common – affecting millions, not hundreds of thousands – and have many potential causes. In addition to infections such as HIV, which destroy immune cells, they can also be caused by diabetes, injury, radiation, and malnutrition. Of these, malnutrition is the most common worldwide.
In addition, there are autoimmune diseases that affect between 24 and 50 million Americans . Autoimmune diseases are diseases in which the immune system mistakenly attacks healthy cells in the body, causing inflammation. Symptoms vary greatly depending on the type of disease and the site of the inflammation.
Lupus, inflammatory bowel disease, and rheumatoid arthritis are some of the best known autoimmune diseases, but there are over 80 of them.
The causes of autoimmune disease remain a mystery . There appears to be some genetic component involved, but the environment seems to play a role as well. Some diseases follow certain infections: some cases of psoriasis occur after a sore throat, while scleroderma, which tightens and strengthens the skin, sometimes develops after cancer treatment. 80 percent of those diagnosed with an autoimmune disease are women (statistics, according to some doctors, indicate a hormonal role). In my case, I have a family history of ulcerative colitis, irritable bowel syndrome (IBS), and even colon cancer.
The number of diagnoses of autoimmune diseases is steadily increasing , especially in Western countries. It is unclear whether this increase is due to improved diagnostic methods and greater awareness, or whether there are indeed more cases of disease.
On the other hand, conditions such as asthma, eczema and allergies are caused by an overactive immune system . Unlike autoimmune diseases, which affect healthy cells in the body, overactive states of the immune system attack normally harmless foreign objects.
Certain medications weaken the immune system
Several conditions, including autoimmune and overactive immune diseases, are treated with immunosuppressive drugs .
Some of the more well-known common immunosuppressants include corticosteroids such as prednisone, hydroxychloroquine (best known for treating or preventing malaria – NOT due to any effectiveness against COVID-19 ), and sulfasalazine. The main side effect of these drugs is an increased risk of infection, but some can cause other serious side effects, such as liver and kidney damage, or can affect your bone health or blood pressure.
Another category of immunosuppressants is biologics , which do not consist of chemicals, like the drugs listed above, but of biological substances, often proteins. You may recognize the familiar brand names of these drugs, such as Remicade, Humira, and Stelara. Biologics do not carry an increased risk of infection, but they do have their own side effects. Some require patients to take antibiotics, and many warn against the use of live vaccines such as measles, mumps and rubella vaccines.
Chemotherapy drugs are also immunosuppressive, but suppression of immunity is not the goal with chemotherapy ; this is an unpleasant side effect . Cancer cells are so hardy that the dose required to destroy 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 can still have both short-term and long-term immunosuppressive effects , especially if it targets the bone marrow . Finally, most people who have donated organs must take immunosuppressive drugs for the rest of their lives to prevent the body from giving them up.
How many people are immunocompromised?
Unfortunately, we have little data on the demographics of immunosuppression. The latest data comes from a 2016 CDC study , which concluded that 2.7% of adults, or 8.5 million Americans, either told their doctor they had a weakened immune system or were taking immunosuppressants. But the real number of immunocompromised adults is almost certainly higher.
For example, the study concluded that women, whites, and people between the ages of 50 and 59 are among the demographic groups most likely to be immunocompromised. But we do know that women are more likely to see doctors and report symptoms than men, and therefore are more likely to get a diagnosis. More importantly, the cost of health care and racism in medicine discourage many minorities from seeking health care. When they do, they are often not taken as seriously as their white counterparts.
How does this all relate to COVID risk?
December 23, 2020 CDC issued updated guidance on its page “People with certain diseases ,” dedicated COVID-19. People with cancer, chronic kidney disease (CKD), heart disease, pregnancy, and organ transplant immunosuppression (among others) are “at increased risk” of serious illness. However, people immunosuppression which is caused by the blood or bone marrow transplantation, immunodeficiency, HIV and taking immunosuppressive drugs, only now “may be at increased risk.”
In short, the available data does not clearly show that people with weakened immune systems are more likely to develop severe COVID than people with healthy, functioning immune systems. In theory, this is encouraging. In practice, I still act as if contracting COVID-19 would be a death sentence. Since March, I have been almost completely isolated with my parents; except for two haircuts and a couple of visits to the doctor, I did not go into the other building. Of course, not all immunocompromised people will feel the need to be so careful, and some may not.
When I get vaccinated, I will feel more secure. While some immunosuppressive drugs and immune conditions prohibit live vaccines, the COVID-19 vaccine is not live . The biggest question surrounding the COVID vaccine for immunocompromised people is its effectiveness. Vaccines work by stimulating your immune system to make antibodies that recognize and fight infection. If you have a weaker immune system, your body is more likely to have a weaker response. While some vaccine studies have involved people with HIV and autoimmune diseases, in most cases the data have not been isolated to draw definitive conclusions about these populations.
However, there are many medical organizations including the American College of Allergy, Asthma, and Immunology ; American College of Rheumatology ; and the National Psoriasis Foundation’s COVID-19 Task Force , all urge immunocompromised people to get the vaccine if they are not known to be allergic to any of the ingredients.
Simply put, the potential effects of a vaccine are far less worrisome than the potential effects of COVID-19 infection. From my point of view, this is a risk worth taking – just like the decision I make every day when I take immunosuppressants. Yes, my medications increase the risk of infection. It even carries a very low risk of contracting a rare, fatal form of lymphoma . However, these risks are preferable to the active symptoms of my illness and how they might affect my life: severe diarrhea, cramps, extreme fatigue, difficulty eating healthy foods such as raw fruits and vegetables, among others. The pandemic has made me more aware of my vulnerability, and yes, it sucks. For me, however, an exacerbation of ulcerative colitis would suck much more.
Not everyone with a weakened immune system has the choices and privileges that I do to work from home and even think about stopping their medication. (I didn’t.) I wear masks and stay at home for myself, of course, but I also do it for people who are more vulnerable than me. I hope you do too.