Black-market fertility drugs exchanged on social media
With infertility skyrocketing in US, women who can’t access expensive drugs go online
After in vitro fertilization led to a miscarriage, Lindsay found herself with thousands of dollars’ worth of fertility drugs left over.
She was lucky: Insurance covered most of her costs. But for most, fertility care is not covered. Lindsay didn’t want to waste the drugs.
“I knew people were paying a lot for these,” she said. “It seemed sort of criminal to throw them away.”
Lindsay and other women interviewed for this article asked that only their first names be used because it’s against federal law to possess or consume drugs not prescribed to you.
Lindsay looked for fellow fertility patients who might want her medications.
She found them on social media. On Instagram, patients used hashtags to covertly signal that they had fertility drugs for offer or that they were in need. On Facebook, Listservs and Discord groups, people swapped (and sometimes sold) leftover medications.
As more women postpone having children until later in life, infertility has become a growing problem, with the World Health Organization estimating that 1 in 6 people globally are now affected. The global fertility market was worth about $35.2 billion last year and is expected to grow to $84 billion by 2028, according to market research firm Imarc. In the U.S., procedures like IVF and egg freezing have steadily risen each year, save for a dip during 2020 lockdowns. Procedures rose more than 26% in
2021, the most recent year available.
Infertility treatments can be pricey. According to the American Society for Reproductive Medicine, one round of IVF averages more than $12,000 in the U.S. Medications alone can easily top $5,000. Yet only 43% of large U.S. employers offered IVF coverage in 2022, and most states do not require private insurers to offer fertility benefits.
It’s a quirk of fertility care that patients wind up with extra medication. Treatments that ramp up egg production and prepare the body for pregnancy typically come via mail from special-order pharmacies. Doctors generally prescribe more than required so doses can be adjusted.
When Lindsay, who was 37 when she started IVF, miscarried 6½ weeks into her pregnancy, she still had enough drugs to last at least an additional month. Through three rounds of IVF, Lindsay estimates that she shipped medicine to around 20 women. Occasionally, she would include a small token, like candies or socks with pineapples, the unofficial symbol of IVF.
There are, of course, risks in buying drugs from strangers on the internet.
“You don’t know if the drugs were stored properly or that they are legitimate,” said Art Caplan, a bioethicist at New York University’s Grossman School of Medicine.
This warning was echoed by the Food and Drug Administration. Treatments received outside the legitimate supply chain could “contain the wrong ingredients, contain too little, too much or no active ingredient at all, or contain other harmful ingredients, or otherwise be unsafe,” a spokesperson said.
Hollee underwent IVF after losing her fallopian tubes to cancer. Without fertility coverage, she and her husband were looking at about $30,000 in medical expenses, plus $12,000 for prescriptions. She joined an IVF support group on Facebook where patients sell and give away unneeded medications. One woman offered to sell two types of drugs for $680 — a bargain. But the drugs never came.
Many IVF groups screen members to weed out scammers by requiring identification and proof that a person is undergoing fertility treatment. Some groups forbid the trade of drugs; a moderator of one group said scams are just too common. Eventually, Hollee, 37, bought medications from another group member. All in all, they spent $3,500 — still a fraction of the pharmacy cost.
“We still saved even though we got scammed,” Hollee said. “If we want to do IVF, we’re forced to do it this way.”
Certain fertility drugs need to be refrigerated to remain potent. Medications that were mishandled or are too old may not work, jeopardizing the success of an expensive and grueling IVF cycle. Rachel, 33, said her doctor advised her that medicines were fine for six months after the expiration date. She makes sure that drugs she gets on Facebook are in their original packaging and sealed.
“It is a little scary when you’re taking any medication from a stranger,” she said.
She took a second job bartending to help pay for fertility treatments, but by sourcing drugs on Facebook,
she was able to avoid taking out a loan. Many women said strangers donating or selling deeply discounted medicines online are a lifeline.
“It’s like a sisterhood that nobody wants to be part of, but you want to help everyone that’s in it,” said Beth, 48, who received donated medications through an email Listserv of patients at her clinic.
Drugmaker EMD Serono, which makes fertility drugs including Gonal-f, said it is aware of the trading practices and “advises patients to always obtain medications only from licensed distributors and pharmacies.” The company also suggested that patients inspect packaging for evidence of tampering and advised against using expired products.
Resolve, the national infertility association, warned in a statement that sharing unused medication “can come with a myriad of risks. If you’re unsure of what to do with your leftover medications, it’s best to consult with your infertility practice to understand the local laws.”
Some clinics do informally support such practices. Beth, for example, said her clinic turned a blind eye to patients leaving leftovers in a coat closet.
It’s hard for doctors to officially endorse the practice, though, because they have no way to assess the legitimacy of the drugs.
“I understand why it happens, but I can’t advocate for it,” said
Zev Williams, director of Columbia University Fertility Center.
For cost-conscious patients, he said his group will prescribe smaller amounts of medicines and order more if needed.
After Lindsay ending up moving and no longer had the insurance coverage she needed for IVF, she wound up tapping the underground fertility market for donated drugs. Eventually, she did get pregnant and gave birth to a son and, later, a daughter.
“It wasn’t like I wanted to be in this weird drug ring,” she said. “But infertility is just heartbreaking like that.”