Post-Roe, many autoimmune patients lose access to ‘gold standard’ drug
Six days after the Supreme Court struck down the right to abortion, lupus patient Becky Schwarz got an unexpected message from her rheumatologist.
“This is a notice to let you know that we are pausing all prescriptions and subsequent refills of methotrexate,” the message read. “This decision has been made in response to the reversal of Roe vs. Wade.”
Schwarz was stunned. Methotrexate is a cheap, common drug prescribed to millions of Americans. Like her, many have rheumatic illnesses. Others take it to treat inflammatory bowel disease, psoriasis or cancer.
Yet few are aware that it is used off-label to end ectopic pregnancies, or that it could be restricted by doctors or pharmacists even in states like Virginia that do not ban abortion.
The reasons are numerous, and muddy.
In Texas, dispensing methotrexate to someone who uses it to induce a miscarriage after 49 days of gestation is a felony; that makes pharmacists hesitant to fill such prescriptions for almost anyone with a uterus. A new total ban on abortion in Tennessee will effectively criminalize any medication that could disrupt pregnancy past the point of fertilization, with strict exceptions for a patient who will otherwise die. And in Virginia, confusion over rules about who is permitted to prescribe drugs “qualified as abortifacients” may be blocking access to the medication.
“That’s what was shocking to me,” said Schwarz, a 27-year-old who lives in Tysons Corner, Va. “In a state where I thought I was relatively protected regardless of what the Supreme Court decided, I found out I wasn’t.”
Methotrexate was originally developed as a chemotherapy agent more than 60 years ago. But in low doses, it has proved to be one of the safest, least expensive and most effective treatments for roughly a dozen autoimmune conditions, from juvenile idiopathic arthritis to Crohn’s disease.
“It’s one of the most common medications that I prescribe,” said Dr. Grant Schulert, a pediatric rheumatology specialist at Cincinnati Children’s Hospital. “It’s really a mainstay of our practice.”
Indeed, methotrexate was first approved to treat rheumatic illnesses in 1959, before Schulert was born and almost 15 years before Roe vs. Wade was decided.
Since its reversal, many patients have been delayed or denied this “gold-standard” treatment for conditions that have nothing to do with pregnancy.
“I have gotten some reports where children have been denied methotrexate for their juvenile arthritis until they’ve proven they’re not pregnant,” said Dr. Cuoghi Edens, an assistant professor of internal medicine and pediatrics at University of Chicago Medicine and a rheumatology expert who treats adults and children.
In one case, a pharmacist initially refused to dispense methotrexate to an 8-year-old girl in Texas. In a note the child’s doctor shared with Edens, the pharmacist wrote, “Females of possible child bearing potential have to have diagnosis on hard copy with state abortion laws.”
Methotrexate is a folate antagonist, which can cause miscarriage at high doses. Although it is not used in medication abortion, it is the preferred treatment for ectopic pregnancy, a rapidly fatal complication that affects about 100,000 patients per year in the U.S.
Here’s everything you need to know about the U.S. Supreme Court’s decision on Roe vs. Wade.
In an ectopic pregnancy, the fertilized egg never reaches the uterus and instead implants, for example, in the fallopian tube. Such pregnancies are always fatal for the fetus and can also kill the mother.
Those patients represent about 2% of the 5 million Americans who take methotrexate. Yet this uncommon, off-label use is the basis for tight new restrictions on a medication that is disproportionately prescribed to women and girls of reproductive age.
“The majority of rheumatic diseases affect females at substantially higher rates than males,” Edens explained. “The prevalence of rheumatoid arthritis in women to men is 3 to 1. For lupus it’s 10 to 1. And so rheumatology is a very female-predominate patient population.”
Such patients take a far lower dose of methotrexate than is used to treat ectopic pregnancy or breast cancer. Most are counseled to use contraceptives, and to switch to alternative treatments if they seek to get pregnant.
Nevertheless, some doctors have already stopped prescribing methotrexate rather than risk falling afoul of antiabortion laws.
Many pharmacists have likewise refused to fill methotrexate prescriptions, or have demanded additional proof before dispensing the medication to patients they believe could get pregnant.
Experts say it’s not clear yet how many patients will lose access to their medication in the wake of the Supreme Court decision, or even which states might try to limit it.
That’s led to panic for many patients who rely on the drug.
“The biggest thing that right now I’m hearing is just a lot of fear of what is going to happen next,” said Schulert. “Even in patients who are doing well who stop a medication, about half will flare their disease in six to 12 months.”
Without methotrexate, many of Schulert’s juvenile idiopathic arthritis patients could no longer hold a pencil or type on a computer. Others face irreversible damage to organs and joints.
“Patients are saying, ‘I’ve been on this medication for years, I’m finally feeling like myself again, I don’t want to have to switch,’” said Zoe Rothblatt, a community outreach manager at the Global Healthy Living Foundation, a patient advocacy organization. “It’s the gold standard, and we need to get the word out so people aren’t scared and they’re able to get their medication.”
Methotrexate belongs to a class of medications called “disease modifying anti-rheumatic drugs,” or DMARDS, that also includes the antimalarial medication hydroxychloroquine, which former President Trump touted as a treatment for COVID-19.
Some lupus patients were switched to methotrexate from hydroxychloroquine in the early months of the pandemic, when the federal government briefly stockpiled the drug. Now, they fear having to scramble to find a new alternative their body will tolerate and their insurance will cover.
That’s because methotrexate isn’t just effective. It’s also extremely cheap. Many chain pharmacies charge less than $10 to fill a typical monthly prescription of the round yellow or orange pills.
“Methotrexate is often a first medication that a person has to use before they can go on to the next step of medication called biologics,” Edens said. “There’s a reason why it’s recommended first, and that’s because it works.”
When DMARDs fail, biologics can be equally or even more effective for treating illnesses such as lupus, ulcerative colitis and psoriasis. But most are new, patent-protected drugs delivered via IV infusion at a medical center. They cost thousands of times more.
“We spend a fair amount of uncompensated time fighting with insurance companies for those even when they’re approved,” said Schulert. “Even if the financial cost is not large to patients, if they have good insurance coverage, there’s a lot of worry of ‘Will it get approved?’ and they have to reapprove it every year.”
Biologics also carry risks that DMARDs don’t, including a rare but serious risk of opportunistic infections.
That’s what happened to Sarah Blahovec of Alexandria, Va., a Crohn’s disease patient who is waiting to see if her methotrexate prescription will be refilled in the coming weeks.
“I’ve tried all the options,” she said. “Anything weaker, I’ll go out of remission. And anything stronger, I’ll get these infections.”
That’s part of what makes the legal chaos around methotrexate so distressing, even to patients who still have access to the drug.
“All medicines are not created equal,” Edens explained. “Some of our medicines don’t work as well as methotrexate. Other medications also have side effects that patients are not able to tolerate, or they interact with other medications that they have to take.”
For such complex patients, even a delay in their medication can make them sicker.
“As a physician I took an oath to do no harm,” Edens said. “To me, this is doing harm.”
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