In 2018, Jennifer Crow was sitting at her desk when she started to feel very tired and assumed she was coming down with something. “I literally slumped over in my chair, unable to hold myself up,” she tells me. When she woke up from her nap, her husband had to carry her to bed. “I couldn’t sit up, I couldn’t move. I was trapped inside my body, and it was terrifying.” After partially regaining her strength in the emergency room, she was sent home with some Xanax with the assurance that nothing was seriously wrong.
It would be another eight months before Crow was diagnosed with Myasthenia Gravis, a chronic autoimmune and neuromuscular disease in which the body’s immune system attacks its own tissues. And it wasn’t until this April that Crow’s doctors finally found a medication that alleviated her chronic joint pain: methotrexate. The prescription medication was life-changing. The 48-year-old could actually dress herself without wincing and sit in her garden without needing assistance to stand up.
The problem is, methotrexate is also a drug that can cause a miscarriage, or what’s known as an abortifacient, and it can be used to treat ectopic pregnancies, which are fatal to the fetus (it’s worth noting that ectopic pregnancies aren’t treated with abortion). And because Crow lives in Tennessee — where abortion after six weeks is currently illegal and a near-total ban is expected in the coming weeks — her access to methotrexate is very much in doubt. In fact, her pharmacy denied her most recent refill.
“I’ve never had a prescription with a standing refill denied, so I immediately got suspicious,” Crow says, noting that she had a hysterectomy in 2015 and is therefore infertile. Over the past week, it’s become increasingly clear that Crow’s suspicions are not unfounded. Unfortunately, she’s among a growing number of people who are frantically calling their pharmacies and wondering why the medication that treats their serious medical condition is no longer available.
Many, like Crow, have specifically reported being denied methotrexate, which is used to treat lupus, arthritis and other rheumatic diseases, as well as certain cancers. (Ninety percent of patients with rheumatoid arthritis — children and adults — take it at some point.) Cuoghi Edens, an assistant professor of pediatrics at the University of Chicago Medicine, recently told Self that there are five million methotrexate prescriptions each year in the U.S. and only about 100,000 ectopic pregnancies. Additionally, others have reported being denied naltrexone, a medication that’s been used in low doses to treat long COVID and help to curb alcohol and opiate use.
All of this has led to confusion and panic among patients across the country who have taken to social media to express their concern while trying to navigate our new regressive landscape. Meanwhile, advocacy groups like The Arthritis Foundation and the Lupus Foundation of America are asking patients to share their stories, and organizing to take legal action against doctors and pharmacies denying such medications.
However, many doctors in conservative states are concerned about legal retribution from anti-abortion groups, San Francisco-based ER physician Graham Walker explains. Much of this comes from doctors practicing what Walker describes as “defensive medicine times 1,000.” In the American health-care system, many medical professionals are already worried about getting sued for malpractice. With the overturning of Roe, that fear has only increased, and instead of consulting with a malpractice attorney about their options, some doctors and pharmacists are opting to err on the side of caution, at the expense of their patients.
“Sadly — and I think incorrectly — some of these physicians and pharmacists are putting their own self-interest above the needs of their patients,” Walker speculates. “I imagine it comes from a place of fear and ignorance for them.”
In the meantime, people like Diana, a 21-year-old student who requested a pseudonym for privacy, continue to suffer the consequences. After Diana was diagnosed with lupus in January 2020, she found that methotrexate was one of the few medications that provided some relief. “It really helped with my joint pain, and my eczema cleared up as well,” Diana says. Other medications she had taken previously, like cytoxan, had left her exhausted and without a functioning immune system, leading to staph infections, pneumonia and eventually septic shock, which could have been fatal. The side effects of methotrexate, on the other hand, were manageable; better yet, “it was relatively affordable” at $8 for tablets and $30 for injections.
Her only trouble with it, then, is that she lives in Michigan, where abortion is legal only due to an injunction against a 1931 state law that bans all abortion except to save the life of a pregnant person (which the Republican legislature is working to have appealed). As a result, she learned her doctor decided to change her medication because he supposedly cannot guarantee continued access to it. “His receptionist relayed to me that he didn’t deem it responsible to keep prescribing a drug that many people were having trouble getting and would rather I take a different medication,” she tells me.
Her remaining options are cytoxan, the medication that led to the complications that sent her into septic shock, or hydroxychloroquine, which can cause blood thinning. Because her case of lupus is so severe, she’s scared to go against the medical advice she’s being given — even if that means swapping out a drug that helped her for a drug that nearly killed her.
With stories like Diana’s, it’s not surprising that medical professionals outside of the U.S., like Ontario-based physician Michelle Cohen, consider this to be flagrant malpractice. “This is a clear human-rights violation, as far as I see it,” she says, explaining that because patients are being denied necessary medications due to having a uterus (or in Crow’s case, a uterus previously), regardless if there is a real risk of pregnancy. “There are countless scenarios where someone with a uterus cannot become pregnant, so to deny medication to 50 percent of patients based on their anatomy is vile and extremely unethical.”
Cohen advises that medical regulators and specialty boards quickly develop new guidelines in order to save lives, but acknowledges that the U.S. is in over its head. “This seems like a medicolegal landmine to me, so I don’t honestly know how medical authorities are planning to navigate this dangerous new situation.” Walker agrees, adding that there’s a serious need for reasonable counsel in medicine. “In the absence of it,” he says, “many will just resort to one of the default human emotions when faced with the unknown — fear.”
Crow didn’t take no for an answer when her doctors initially acted like her pain was all in her head, so she certainly wasn’t about to do it when it came to the prescription medication she needed either. When she followed up with her doctor about the methotrexate, they confirmed that other patients had been having similar problems and referred her to a refill team at the practice. From there, they provided her with a new script, which her pharmacy did fill. In the end, no one was able to explain what happened to her first refill, which is still on her pharmacy app as “pending approval.”
Although she acknowledges that she was fortunate to have resolved the issue, she’s concerned it could easily happen again. And for some people, it already has. Edens reported a call she received from a colleague in Texas who told her about an eight-year-old girl whose pharmacist refused to fill her prescription for methotrexate. In all likelihood, we’re just witnessing the beginning of the sweeping impact the Roe decision will have on countless lives. As Crow says, “I worry the most for other people who have bigger hurdles getting their meds.”