Becky Hubbard, 46, has decided to get sterilized so that she can go back on the only medication that has relieved her disabling pain from rheumatoid arthritis for the last eight years.
“It is frustrating as hell,” said Hubbard, a former nurse who lives in Johnson City, Tenn., now waiting to see her gynecologist.
The sudden imposition of antiabortion laws after Roe’s reversal has left patients, doctors and pharmacists wading through a minefield of treatment issues and legal and ethical dilemmas related to women’s health care — even in situations like Hubbard’s that have nothing to do with pregnancy.
Medicines that treat conditions from cancer to autoimmune diseases to ulcers can also end a pregnancy or cause birth defects. As a result, doctors and pharmacists in more than a dozen states with strict abortion restrictions must suddenly navigate whether and when to order such drugs because they could be held criminally liable and lose their licenses for prescribing some of them to pregnant women.
Even if they can show their patients suffer from conditions such as rheumatoid arthritis, some doctors worry they could be prosecuted for prescribing such drugs to a patient with an unintended pregnancy. Such patients are also at greater risk because they can no longer seek abortions in their home states should they accidentally become pregnant while taking such drugs — no matter how grievous the injuries to the developing fetus.
“Methotrexate is just the tip of the iceberg,” said Traci Poole, a practicing pharmacist and faculty member at Belmont University College of Pharmacy in Nashville. “If you are of childbearing age, are you going to be denied medications that could potentially interfere with a pregnancy?”
There are no reliable estimates of how many women like Hubbard may have had their treatment regimens affected under the spate of new abortion bans. But some patient advocates say they have received dozens of reports from people encountering obstacles in the weeks since Roe’s reversal.
“We were surprised at the sheer number of complaints from people with arthritis and autoimmune conditions who were having problems filling prescriptions for methotrexate after the Dobbs decision,” said Steven Newmark, director of policy and chief legal officer for the Global Healthy Living Foundation, a nonprofit that advocates on behalf of people with chronic diseases.
The group is now attempting to check those accounts, submitted through CreakyJoints, its digital forum for people with arthritis and their caregivers. Newmark said the group has also reached out to elected officials to try to clarify state policies — so far with no success. He said he would be surprised if even those with strong antiabortion views would not want to protect people living in pain.
“Trigger laws should not be impacting chronically ill patients in need of medication,” he said.
Doctors and pharmacists acknowledge being blindsided by the speed of the changes to state laws and say they are making changes to their practices to protect against liability. Major pharmacy chains like CVS and Walgreens, for instance, are instructing employees to make extra checks to validate that prescriptions will not be used to terminate pregnancies and delay filling them until their intended use is confirmed.
Civil rights and women’s advocates denounce many of these changes, questioning whether they may violate federal protections against discrimination on the basis of sex or disability. The issues are particularly disturbing, they say, since women are far more likely than men to have autoimmune diseases, and to be treated for conditions ranging from acne to anxiety and depression.
“We are seeing the spillover effects of Dobbs,” said Usha Ranji, associate director for women’s health policy at the Kaiser Family Foundation, a nonprofit that focuses on health policy. “The impact is going to fall hard on women.”
Antiabortion activists, for their part, reject that view. They say they’re troubled by accounts like Hubbard’s because they never intended to restrict drugs like methotrexate to women with chronic health conditions.
Katie Glenn, state policy director for Susan B. Anthony Pro-Life America, an antiabortion advocacy group, said doctors and pharmacists should not have any concerns about prescribing those drugs to their patients, as long as they are not doing so to terminate a pregnancy.
“Intent is the key here,” Glenn said. “If you’re a rheumatologist, you’re not doing abortions. If you’ve never prescribed methotrexate for abortion, you’re free to continue prescribing it as you were.”
‘The gold standard’
For Hubbard, Roe’s reversal has been life-changing. Before Tennessee’s “heartbeat” ban blocked most abortions in the state, she said her doctors had no problem treating her with methotrexate even though she wasn’t taking birth control.
She and her husband have been unable to conceive for nearly two decades so the chance of her becoming pregnant in her late 40s seemed minuscule. She had taken birth control pills years ago, which she believes affected her health, so she is loath to try them again. She has similar worries about an IUD.
But most of all, she hates the idea of going off methotrexate, an extraordinarily effective anti-inflammatory taken by nearly 60 percent of all rheumatoid arthritis patients, according to the Johns Hopkins Arthritis Center.
“It is the gold standard for almost every rheumatological or autoimmune disease that affects the connective tissue, especially the joints,” said Fehmida Zahabi, a rheumatologist in the north Dallas area and president of the State of Texas Association of Rheumatologists.
The drug has gained notoriety for other uses as well. Methotrexate is specifically named in several abortion bans because at a higher dose, it has been used to induce abortions and also to end ectopic pregnancies when an embryo implants outside the uterus — a dire situation in which the fertilized egg cannot survive and must be removed to avoid life-threatening complications for the mother.
It can also lead to birth defects, and the potential of accidental pregnancies in places where abortion is banned has led some rheumatologists to reconsider prescribing the drug to women of childbearing age.
What Hubbard knows is that a treatment regimen featuring methotrexate enabled her to resume her life after her arthritis had become so crippling she had to stop working as a nurse. Although she began taking the medication in 2014, it has taken years of trial and error to find the right combination and dosages of drugs to keep the disease from progressing. While she still can’t work full time, she said she sells crafts that she makes at home and is able to spend more time with her adopted 14-year-old son.
She said she fears that without methotrexate, her pain would take over her life again. “If you can’t get the medicine that gets you out of the flares, you just have to live with the pain,” Hubbard said. “It’s awful.”
Newmark, the patient advocate, noted that the difference between taking medication and not for those with severe rheumatoid arthritis “is the difference between living normally and writhing in pain in bed.” Switching to another treatment is not simple, either, he added, because patients often spend years experimenting to find the right combination of drugs to keep their diseases in check.
Hubbard’s doctor declined to comment for this story, saying he could not discuss an individual patient’s treatment.
Most medical groups say they are sympathetic to the plight of such patients and looking to see what steps they might take to protect them.
“Physicians have been placed in an impossible situation — trying to meet their ethical duties to place patient health and well-being first, while attempting to comply with vague, restrictive, complex, and conflicting state laws that interfere in the practice of medicine and jeopardize the health of patients,” Jack Resneck Jr., president of the American Medical Association, told federal lawmakers on July 19.
The American College of Rheumatology assembled a task force last month to try to assess the scope of the problem, said Kenneth Saag, the group’s president. “There is concern … that one of the unintended consequences is that patients are going to have reduced access to this medicine and other medicines,” he said.
Physicians are also worried about their potential liability from antiabortion laws that took effect virtually overnight in some states following the high court’s decision, said Saag, director of the division of clinical rheumatology the University of Alabama at Birmingham.
They’re also concerned about the ramifications of accidental pregnancies. While doctors prescribing drugs such as methotrexate routinely talk to their patients about the importance of birth control, he said, unintended pregnancies occur, posing distressing questions for doctors and patients.
“Some women have elected historically to consider pregnancy termination” in such situations, he said. “In some places, that may no longer be an option.”
As doctors balance their liability against their patients’ needs and medical standards of care, women who depend on such drugs say they feel frightened and anxious about whether they will be able to obtain their next refill.
Claire Eby, who lives near Austin, has taken methotrexate since she was diagnosed with juvenile arthritis at age 4. When she was 18, her doctors tried to wean her off the drug, believing she was going into remission.
“Things went down south really fast,” said Eby, now 26. She developed inflammation in her eyes, which led to cataracts. The medicine that stopped her eyes from deteriorating further was methotrexate.
“Your health can deteriorate rapidly and also permanently,” if you stop taking methotrexate, Eby said. “My vision damage was permanent.”
Eby said she takes birth control, but her doctors also recently added a pregnancy test to the routine lab work she has to undergo every three months to stay on the medication — a change that coincided with Texas’s increasingly strict abortion restrictions.
“They hadn’t done that before,” Eby said.
Doctors usually recommend against stopping methotrexate without being weaned off slowly, and some patients worry that getting cut off from the drug when they go to get a refill could be dangerous.
“It’s not safe to just cold-turkey stop,” said lupus patient Becky Schwartz, 27, who lives in Tysons, Va.
She said the firm that owns her rheumatologist’s practice put a temporary pause on methotrexate prescriptions in July as it evaluates the laws that took effect after the Supreme Court’s decision, although Virginia has not imposed new abortion restrictions.
Schwartz said she is grateful that she had just refilled her prescription before the new policy took effect, and she and her doctor came up with an emergency plan to wean her off the drug safely.
But the date her prescription runs out looms big. “I will have no meds left come September,” she said.
Since the Supreme Court’s decision, pharmacists, who have liability for prescriptions they dispense, also have been scrambling to figure out how to respond.
At least one of the nation’s largest pharmacy chains has told their pharmacists in states with abortion bans to ask for diagnosis codes before dispensing drugs like methotrexate and misoprostol, which is used to complete miscarriages as well as for abortions. “We’re committed to supporting women’s health care,” said Mike DeAngelis, CVS’s executive director for corporate communications. But he added, “These laws, some of which include criminal penalties, have forced us to require pharmacists in these states to validate that the intended indication is not to terminate a pregnancy.”
A spokesman for Walgreens said that national pharmacy chain is also taking trigger laws into consideration when filling prescriptions for drugs that may be used to terminate a pregnancy. “In these states, our pharmacists work closely with prescribers as needed, to fill lawful, clinically appropriate prescriptions,” Fraser Engerman, a company spokesman, said in an email.
Such policy changes may be subject to challenge under federal civil rights law, however, because they potentially target people on the basis of sex and disability, argued Matthew Cortland, a senior fellow at Data for Progress, a think tank dedicated to advancing liberal causes, who shared a CVS memo on Twitter.
Some doctors also object to pharmacies requiring diagnosis codes for drugs like methotrexate, saying that a forgotten code may lead to delays filling prescriptions for patients with debilitating pain.
“It becomes a huge problem if we see [a] patient on Thursday or Friday and we don’t get the pharmacy to call back” immediately, said Zahabi, the Dallas-based rheumatologist. “The patient can’t get treatment for three or four days, which can be agonizing.”
But Poole dismissed such concerns, saying pharmacists have advocated for years for the use of such codes in the interest of patient safety; many medical offices already provide them on electronic prescriptions.
Elisa Greene, associate professor of pharmacy practice at Belmont University College of Pharmacy, noted that prescribing and filling prescriptions for drugs that can cause birth defects is not a new issue. She contrasted the lack of guidance to doctors and pharmacists handling prescriptions like methotrexate with the tight regimen required by the FDA for those prescribing or dispensing Accutane — an acne treatment that can cause birth defects.
Doctors and pharmacists, along with their patients regardless of age or gender, are required to enroll in an education program about the drug’s potential dangers, she said. And female patients of childbearing age must have negative pregnancy test results before a prescription is filled.
“That requirement … is not in place for methotrexate,” Greene wrote in a text message.
Living in pain
For patients like Hubbard, the concerns are more immediate. She has gone without methotrexate injections for several weeks now, while waiting to see a gynecologist about having a tubal ligation that will prevent her from ever getting pregnant.
A week ago, she fell down during her son’s birthday celebration because of the pain in her joints. “Things have definitely gotten worse,” she said. “My joints aren’t doing as well.”
Hubbard said she wishes she had the foresight to anticipate that Tennessee’s fetal heartbeat law, which took effect the day after Roe’s reversal, would have such a big effect on her own life.
“I knew there would be other things [than abortion] affected,” she said. “Never in my life did I think it would be my rheumatoid arthritis medicine.”