Who Counts as Immunocompromised? A Guide for High-Risk Individuals
By Jaimie Seaton,from HealthyWomen’s Coronavirus center
This past week, the co-operative grocery stores in my area announced their first hour of operation every day will be reserved for the elderly, pregnant women and “at-risk populations as defined by the CDC.”
This decision has many in my community wondering who counts as high risk. According to the Centers for Disease Control (CDC), those with chronic conditions such as heart disease, diabetes or lung disease are at higher risk for severe illness if they contract coronavirus. But the CDC also notes that people with a “weakened immune system” are among those “most at risk.”
So what exactly does it mean to be immunosuppressed and who falls in that category?
Who Has a Weakened Immune System
People who are immunosuppressed (or immunocompromised) have immune systems that are highly susceptible to infectious diseases, including COVID-19, the respiratory illness caused by coronavirus. Not only are these people more likely to contract illnesses, sometimes repeatedly, but they are also more likely to have “unusually severe” symptoms.
A person can become immunocompromised in four major ways: through a congenital disorder; through acquired conditions such as diabetes and HIV; through autoimmune diseases; and through certain medications and treatments.
Still other health conditions may weaken the immune systems. For example, some studies link alcohol addiction with suppressed immune systems. Age is also a factor: Those over the age of 65 have a weakened immune system, and those 80 and older are immunocompromised by definition. Lifestyle factors such as stress and lack of sleep can also weaken the immune system.
It’s difficult to get reliable numbers on how many people are immunocompromised. The National Institute of Environmental Health Sciences estimates 24 million Americans have an autoimmune disease, but that number doesn’t take into account those who are immunocompromised because of a genetic disorder, or as a result of medications, such as those taken after an organ transplant or to treat cancer.
I recently spoke with Lisa Kennedy Sheldon, Ph.D., chief clinical officer at the Oncology Nursing Society, and an oncology nurse practitioner, about the link between cancer treatments and immunosuppression.
“Certain types of chemotherapy, not all types, can decrease the immune system, making you more immunodeficient,” explained Sheldon. “Current radiation treatment that is targeting particular parts of the body, including the spleen or large numbers of circulating blood cells and/or bone marrow, can also decrease the number of white blood cells affecting the body’s ability to fight infection.”
There are also medications that actively suppress the immune system, such as those used after an organ transplant.
“Patients need to stay on these immunosuppressing medications,” said Connie Newman, M.D., an adjunct professor of medicine in endocrinology, diabetes and metabolism at the NYU School of Medicine, and a member of HealthyWomen’s Women’s Health Advisory Council. “Some people require for various illnesses, chronic steroids, and if the steroids are high dose, that will also suppress the immune system.” Newman added that it’s not clear if a short course of steroids will affect the immune system.
Both Sheldon and Newman stressed that patients being treated for chronic illnesses need to stay on their medication and call their health care provider to find out if their treatment could suppress their immune system.
With autoimmune diseases, the body’s immune system attacks its own healthy tissue, and treatment often involves medications that effectively knock-out the immune system. The American Autoimmune Related Diseases Association lists over 100 autoimmune diseases, including Crohn’s Disease and ulcerative colitis. Treatment for both diseases can involve steroids or biologics, which suppress the immune system and are also used to treat other common autoimmune disorders like rheumatoid arthritis.
“Rushed to the ER:” Life with Immunocompromise
Natalie Hayden is an IBD (inflammatory bowel disease) patient advocate, who was diagnosed with Crohn’s fifteen years ago, at age 21. Since 2016, she’s been documenting her experience living with the disease in her blog, Lights, Camera, Crohn’s.
In an email to HealthyWomen, Hayden gave me an example of the danger faced by immunocompromised people every day.
When her 2-year-old son became ill with the stomach flu, she took care of him. “Three days later I felt like I was having a bowel obstruction and was rushed to the ER. Turns out I had acute gastroenteritis (bad stomach flu), leukopenia (my white blood cells plummeted), and my potassium levels dropped. I was kept overnight…that’s the difference between a ‘healthy’ person getting stomach flu, and me,” Hayden wrote.
This is why it’s imperative for those who are immunosuppressed to follow the CDC guidelines—including regular handwashing, avoiding touching your face with unwashed hands and disinfecting household surfaces—and to even go further to avoid acquiring or spreading coronavirus.
“What’s really important is that people who are immunocompromised should avoid going out, they should avoid crowds. They should avoid contact with people who have an illness such as the flu or coronavirus. If they are out they should keep their distance from others and not shake hands, but the main advice would be to stay home as much as you can,” advised Newman, who added that folks should keep their house clean and limit exposure to people who have been out and about.
“Fear the Worst:” Immunocompromise During a Pandemic
This is precisely what Hayden is doing.
“I’m staying at home. I’m staying on my biologic. I’m washing my hands around the clock. I’m getting plenty of rest. My husband has been going to the grocery store. I’m cooking, rather than getting take out, as having someone else handle my family’s food even concerns me.”
It’s obviously important to follow the CDC guidelines and focus on hygiene and social distancing, but there are other things we can all do to take care of our mental health at home.
“Healthy behaviors are essential. We have to build in some of the fun things in our lives, not just to coat our brains in serotonin but to decrease the stress associated with this time,” advises Sheldon. “If you have an immunocompromised condition, you already have that stress and you’re worried about yourself in this, and then we have this pandemic anxiety that’s everywhere.
“We want to make sure that we’re building in the things that are fun in our lives and leaning on the people we know make us happy. This is a very good time to connect, it’s going to be better for mental health, it’ll be better for our rest, it’ll be better for our immune system. So, let’s make sure that we’re not just talking about a prescription or a test or nasal swab, that we’re also talking about healthy behaviors.”
Patient-advocate Hayden is also doing all she can to educate the public about the severity of this situation and trying to equip people with facts. She’s not alone. Over the weekend the hashtag #highriskcovid19 was trending on Twitter, with people from around the world sharing their stories and imploring others to stay home and “flatten the curve“, or curb the spread of the virus.
I’m glad the message is being heard. I worry for my sister, who has ulcerative colitis, and others who are immunocompromised in some way. I’m grateful that retailers, including my local grocers, are working to protect their most vulnerable customers.
The general population also needs to do their part, by social distancing and following the other CDC guidelines. And while many people are doing so, many others aren’t, including large groups of young people who are celebrating spring break on crowded beaches in Florida.
“While I’m following all the recommendations, it’s extremely disconcerting to see all the photos and videos on social media of people carelessly traveling, going out to eat, partying at bars, and acting like nothing is going on,” Hayden wrote.
“When I think of myself getting COVID-19, I fear the worst.”
For more information and resources:
- The Centers for Disease Control
- The American Autoimmune Related Diseases Association
- The American Cancer Society
- American Diabetes Association
- amfAR, The Foundation for AIDS Research