Kevin Brennan is a member of the Arthritis Foundation’s National Advocacy Board.
I take a drug that made it possible for me to climb Mount Kilimanjaro. Without it, I might be in a wheelchair. Today it could kill me.
At age 15, I was diagnosed with psoriatic arthritis, a disease that causes my misguided immune system to mistake my joints for a foreign invader. It launched unceasing and vicious attacks on my bones, cartilage and connective tissue. In a futile effort to relieve the pain, I consumed handfuls of aspirin and ibuprofen.
Twenty years ago, there was a significant medical breakthrough for people like me. Scientists figured out how to grow molecules that could be injected or infused into the body that bring about a cease-fire. They identified a part of the immune system called tumor necrosis factor alpha (TNFa) that could be neutralized by these new biological therapies. The injected molecules would intercept TNFa and bind with it before it reached the joints.
The trade-off was a compromised immune system. I was more than willing to accept that deal. These biologics gave me my life back. I climbed the highest mountain in Africa. I went skydiving. I bike to work — more than 100 miles every week. I ski. I’ve had eight surgeries and a toe amputated, but outwardly, you would have no idea that I have this disease. I don’t ordinarily have to take special precautions, beyond being certain to get my annual flu shot.
Until now. As the coronavirus pandemic comes closer to home, Americans like me, with weakened immune systems, are thinking hard about our options. We are numerous, with an array of underlying conditions, including primary immunodeficiency, cancer, inflammatory arthritis and Down syndrome. The Arthritis Foundation reports that people with compromised immune systems could be more likely to contract the coronavirus, and if we do get it, there are concerns that we’re much more likely to develop the most serious and life-threatening symptoms.
And that leads to some difficult questions: Should I stop taking my medicine and brace for a painful and crippling flare for fear that my weakened immune system could threaten my life? Or is it already too late for my immune system to rebound to fight the coronavirus? Do I keep my elementary-school-aged children out of school for fear that they will bring the virus home with them?
As luck would have it, I saw my rheumatologist on Monday. He told me to stay on my medication. If the war in my body resumes after I stop taking it, my immune system will be compromised and just as likely to develop the most serious complications from the virus. In other words, I’m at high risk either way. There is no good option.
He also advised me to cancel my ski trip to Utah next week; as a high-risk patient, he said, I shouldn’t risk being on an airplane. That’s no big deal, under the circumstances, and I’m definitely not alone in having to change plans. A colleague who advocates for people with Down syndrome canceled a trip to Washington; her daughter has Down syndrome, and she can’t risk becoming infected.
Even scarier, a friend who is immunosuppressed due to ankylosing spondylitis, another inflammatory form of arthritis, has placed herself in quarantine after being exposed to two colleagues diagnosed with the coronavirus. She’s checking her temperature, calling her doctor to see if she can get tested — and worrying about the tingling feeling in her chest, not sure if it’s real or a product of her anxiety.
I’ve received a few looks and comments from people who think I’m overreacting about the coronavirus. Some people have complained about being inconvenienced if schools are closed or vacations get canceled. Others think it’s inevitable that we’ll all get it and anticipate suffering through a bad cold or flu symptoms.
I worry about dying on a ventilator.
I’m preparing for a difficult and anxious few months. My public activities will be strictly limited going forward and most, if not all, of my work will be performed from home. I will remain vigilant for evidence that anyone in my family has a cough or elevated temperature. Instead of going to the gym, I will get my exercise from solitary bike rides.
As we grapple with this new and evolving reality, I ask my fellow Americans to take the threat of this virus seriously. Please protect yourselves and your families by following the recommended public health measures. It will protect you — and it may save my life.