Black-market fertility drugs exchanged on social media
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.”