That’s the best word to describe my starting to take an immunosuppressing drug like Humira in the midst of a pandemic where a counterattack by the immune system is the body’s best defense. The only thing more insane would have been not doing that and letting rheumatoid arthritis eat away at the tissue in my wrists without trying the most promising treatment for arresting the disease’s progress.
A devil’s bargain, indeed. But it’s not mine alone: Millions of others with chronic conditions face comparably high-stakes gambles in this time of the coronavirus.
While everyone needs wrists that work, I’m especially dependent on them. I am a recovering newspaper reporter who now runs a fellowship program for health journalists that means endless time corresponding with reporters and editors, hospital execs, and public health leaders, along with funders. And I write books, with a too-soon deadline for my ninth. Dragon, a speech recognition program, lets me dictate rather than type, but that only works for notes and first drafts. The 12 hours a day I spend at my keyboard would be taxing for even the healthiest of hands and wrists.
I don’t expect miracles from drug therapy, just a way to keep the pain from getting worse and let me continue with the hunting, pecking, and writing that I love.
To help me decide whether to take Humira, I composed two lists — one with the benefits, the other tallying risks — with assistance from my rheumatologist and internist, friends who’d tried Humira, and online reviewers. Dragon and a pair of wrist splints eased the aching as I assembled my inventories.
Here are the ways that Humira and I appear to be a good fit: I’d been misdiagnosed for years with more conventional osteoarthritis; one doctor actually told me I should be a man and suck up the pain. A decade ago, a smart rheumatologist figured out that I had “borderline” rheumatoid arthritis. Late in 2021 — based on new and newly sensitive MRI scans of my wrists — my wrist surgeon and my latest rheumatologist delivered the bad news: I have full-blown rheumatoid arthritis with pea-sized cysts in multiple carpal bones, and I need an alternative to methotrexate, a less-powerful immunosuppressing drug that I stopped taking at the beginning of the Covid-19 pandemic and that hadn’t been much help.
The expert clinicians agree that my best hope is Humira (generic name, adalimumab), one in a class of drugs known as monoclonal antibodies that block the immune system proteins that make joints swell. The medication is used as well to treat Crohn’s disease, ulcerative colitis, and plaque psoriasis.
Humira has been around for 20 years, is on the World Health Organization’s list of essential medicines, and is the best-selling drug in the world for a reason. Studies suggest it can not only reduce inflammation and pain, but can also check further joint damage. And it’s supposed to work fast. That’s encouraging to me and to my rheumatologist, John Stone, director of clinical rheumatology at Massachusetts General Hospital in Boston, who thinks Humira is a great first step for me. He and my primary care doctor, Jeffrey Bass, say the clock is ticking on the damage to my wrist tissue and I have to battle back now.
Those are the pros. But as a lifelong journalist, I’m instinctively and obsessively skeptical, so I started a second tally, of Humira’s cons. The Food and Drug Administration requires AbbVie, the manufacturer, to list warnings about the drug: of serious infections, including tuberculosis; of cancers, including lymphoma; as well as of headaches, rashes, and other side effects. Most are rare, although some are deadly. My doctors and I will be looking for early signs of trouble, from infections to allergies, psoriasis, and problems with my heart, blood, or liver.
Then there’s the cash cost, which is walloping and near-impossible to calculate. After consulting with a trio of insurance execs, I estimate I’ll pay $10,000 over the next year for Humira, with my insurers paying many more times that. (While I’m far from rich, if I earned less and didn’t have Medicare drug coverage, I might qualify for a scholarship.) I’ll also talk to my physicians about someday switching to one of the FDA-approved biosimilars that are like Humira but less expensive, and are forecast to become available in the U.S. in 2023.
My greatest fear these days, however, is that Humira could suppress my immune system’s ability to fight infection. That’s a scary scenario in the middle of a pandemic, when the immune system’s organs, cells, and proteins are critical to fighting off shape-shifting Covid invaders. I’ve been trying to understand how real that risk is. So has the American College of Rheumatology, which assembled a task force to gather all the evidence and advise its members and their patients. According to the task force’s report, it’s OK for people like me to start taking immune-suppressing biologics like Humira if I don’t have Covid-19, although it’s a good idea to temporarily pause if I do. The task force conceded that not enough studies have been done to know for sure. “Data linking specific rheumatologic treatments to Covid-19 or its complications are either lacking or, when available, conflicting,” the report said. It added, surprisingly, that therapies like Humira “could theoretically mitigate the severe impact of Covid-19.”
I wrote to the president of the American College of Rheumatology, Kenneth Saag, a rheumatologist at the University of Alabama at Birmingham, who emailed back that “patients with rheumatic disease who are immunocompromised (on nearly any anti-rheumatic medication) may have slightly greater risk of acquiring Covid and having a less robust immune response to the virus.”
For its part, AbbVie isn’t offering any advice via its website or my repeated outreach to its spokespeople, explaining that it “has not studied the use of HUMIRA in patients with Covid-19.”
To some, adding up such risks and uncertainties might make voluntarily joining the ranks of 7 million immunocompromised Americans seem harebrained for sure. To me, the hope of relieving my arthritis means it’d be foolish not to give it a try. Now. When typing even a short essay like this makes my wrists feel like they’re on fire.
So after building my dueling lists and checking them twice, here I am, using Humira to try and douse those flames.
At the same, time I’m taking all the precautions that Drs. Stone, Bass, and Saag suggest. Before I took my first dose I was tested to ensure I have sufficient anti-Covid antibodies in my blood. I’m being extra careful not to expose myself to the virus, gearing up for a fourth dose/second booster five months after my first booster, and am wearing an N95 mask anytime I leave my house or on the rare occasions when we have visitors. I’ll also work with my doctors to see if and when it makes sense to add methotrexate to the Humira, a combination that has proven much more effective than either treatment alone.
And every two weeks I’ll do what I did for the second time last week: Take my prefilled syringe out of the refrigerator, place it on my well-padded belly, poke the plum-colored button, listen for the loud click, then pray that the expensive drug I’m infusing soothes my aching hands.
Larry Tye is a former health reporter at the Boston Globe, director of the Health Coverage Fellowship, and the author most recently of “Demagogue: The Life and Long Shadow of Senator Joe McCarthy” (Mariner Books, 2020).
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