Fertility drugs are expensive, and America's fractured insurance industry doesn't always cover all the treatments people need to have kids.
There's a thriving trade of IVF drugs on Instagram, Reddit, and other corners of the internet.
But buyers risk running afoul of the law and getting expired or poorly stored drugs.
Many of the sellers are just people who have leftover medication from their own treatments and want to help others.
In 2018, Ashley and her husband decided to pursue in vitro fertilization. While a battery of tests showed he had "Olympian sperm," Ashley's Fallopian tubes were blocked by scar tissue, preventing fertilized eggs from ever finding their way to her uterus.
With IVF, doctors told the couple they could combine Ashley's eggs with her husband's sperm in a lab and implant a healthy embryo directly into her womb, dramatically increasing their odds of conceiving.
Between 1978 and 2018, this process has created more than 8 million babies worldwide. The global fertility industry, which includes IVF and other tools and treatments, is currently valued at almost $15 billion.
But the use of reproductive technologies can come at an incredible cost to aspiring families. It took Ashley six rounds of IVF and roughly $75,000 to give birth to twins.
And it would have cost a lot more if not for a booming underground drug trade on Instagram.
IVF drugs are expensive, so people try to find them on Instagram
In the United States, the majority of Americans pay for fertility treatments out of pocket. Only 13 states mandate IVF insurance coverage.
Even when patients are insured, essential IVF drugs, which can cost up to $5,000 per round, are often excluded. Just as IVF patients overcome biological hurdles to parenthood, they need to clear the financial ones, too.
Since the early days of the internet, people with fertility troubles have turned to message boards, chat rooms, and websites like Craigslist to share essential medications with each other.
"This has been going on forever," Barbara Collura, president and CEO of Resolve: The National Infertility Association, told Insider.
Typically, these Instagram swaps are less like a Dallas Buyers' Club for the digital age and more like coupon clipping your way to conception. Searching for fertility drugs online allowed Ashley, who asked for Insider to use only her first name out of fear of legal repercussions, to source about 90% of her fertility drugs for free.
While some people may sell drugs of unknown origin, more often it's one IVF patient donating medications left over from their treatment cycle to another patient in need.
Even then, it's not without risk. While the most sought-after drugs are licensed for use in the United States — including Menopur and Gonal-F, which stimulate egg production, and Ganirelix and Lupron, which delay ovulation — sharing prescriptions of any kind is against the law.
Products from "rogue online pharmacies or websites… may be counterfeit, contaminated, expired or otherwise unsafe," a spokesperson for the Food and Drug Administration, which regulates prescription drugs, told Insider. "The FDA may take enforcement actions against these entities, as appropriate."
These actions can include seizing products, court injunctions against further sales, and even criminal fines and prosecution. Though the FDA does not typically pursue individual patients, the risk remains.
"That's why they call it 'candy,'" says Malloreigh Cattell, 27, an Instagram-active IVF patient who has not personally traded drugs on the platform. "It kind of throws it off a little bit versus 'Drugs for Sale!'"
Healthcare providers argue that patients who source their own drugs may compromise their own fertility treatment. Medications from unconventional sources, whether it's a neighbor, Instagram follower, or overseas pharmacy, are more likely to have been improperly stored.
That can lower their effectiveness, according to Suruchi S. Thakore, an assistant professor of obstetrics and gynecology at the University of Cincinnati College of Medicine. While Gonal-F injectable pens can last for three months when refrigerated, for example, the IVF medication Ovidrel should be kept at room temperature for no more than 30 days.
FDA and other regulations are meant to ensure American pharmacies meet these storage standards. But drugs procured through other methods often evade such oversight. If an imported drug is held up by customs, Thakore says, the transport ice pack might melt, and overheated medication might not work as intended. Even when drugs are changing hands between IVF patients, people are taking dozens of tiny chances — on whether the bottles were kept out of the sun, stored at a proper temperature, or shipped efficiently.
"We as physicians put a lot of trust in those medications working exactly as we expect them to," Thakore told Insider. "Even minor fluctuations can mess up their cycle."
But for IVF patients like Ashley, the risks involved in sending leftover drugs to Instagram connections seems manageable — and ultimately worth taking.
Insurers don't have a consistent approach to covering fertility treatment
Each cycle of IVF is broken down into several stages, the most important of which are egg retrievals and embryo transfers.
First, doctors remove eggs from the ovaries, so they can inseminate them in a lab. Later, doctors take a selection of those embryos and place them in the uterus.
If all goes well, the embryo will implant and grow into a healthy baby. But if it doesn't work, many people find themselves repeating one or both steps over and over, at a significant cost each time.
To prepare for the retrieval, patients often have to take several different medications to optimize their ovaries for egg production. Typically, the ovaries release just one egg a month, which can result in a pregnancy or a period. But most fertility doctors aim to retrieve 20 or more eggs in a single go.
To accomplish this, they rely on follicle-stimulating hormones like Gonal-F, as well as hormone suppressors like Lupron, both of which can cost hundreds of dollars out of pocket. Some patients may also need to prime their bodies for an embryo transplant with more common (and less expensive) hormones like estrogen and progesterone.
When Jessica got thyroid cancer, her health insurance covered almost everything.
But when she decided she wanted to get pregnant — and would need the help of modern medicine to do it — she learned she would have to pay every penny.
"My insurance was actually really ridiculous," she told Insider. "They covered absolutely nothing around fertility. They wouldn't pay for bloodwork."
Jessica, who asked that Insider use only her first name so she could talk freely about sourcing medications, found support through other means. She got the majority of her IVF drugs through the Livestrong Fertility program, which works with pharmaceutical companies to provide discounted fertility medications to cancer patients.
When one of her prescriptions, a follicle-stimulating hormone called Menopur, wasn't covered by Livestrong, she diligently tracked Facebook and Instagram posts to find people giving away their excess vials. Over the course of a year, Jessica was able to pull together most of what she needed through donations.
Such obstacles are common among fertility patients in the United States. While some fertility clinics quietly accept leftover medications and distribute them to patients in need, and pharmaceutical companies like Merck offer discounts on medications for low-income patients, many patients fall through the gaps.
Insurance companies tend to position fertility treatments like IVF as elective procedures. Wider cultural factors, like taboos around talking openly about sex and reproduction, and the stigma around infertility, only amplify the challenges patients face in accessing care, Collura said.
IVF has also been politicized. Supreme Court Justice Amy Coney Barrett, for example, has previously taken issue with standard IVF practices such as discarding excess embryos. Health departments, insurers, governors, and individual employers are the ones who can demand coverage and enact change. But in these negotiations, political and financial incentives can take precedence over the needs of individual patients.
"Very progressive states are more willing to mandate coverage, and states that are more conservative aren't," Libby Baney, a partner at law firm Faegre Drinker and senior advisor to the Alliance for Safe Online Pharmacies, told Insider.
These obstacles can be especially damaging for queer people and people of color. Black women, for example, are almost twice as likely to struggle with infertility as white women, according to a 2013 CDC report, but it's still often seen as a white woman's problem.
"I get a lot of messages from [Black] people who are not comfortable coming out about their story, but they're out there," says Brittney Cain, a 31-year-old woman in Atlanta who conceived her son through IVF.
Many of the other Black people Cain met in the course of her infertility treatments used anonymous accounts. Often, she said, the only evidence of their race was dark skin-toned emojis.
In the last few years, patients and providers have recently begun to push back publicly on the harmful narratives surrounding IVF, Collura said. In 2017, for example, the American Medical Association officially labeled infertility a disease, in part to prod "insurance coverage and payment."
Chrissy Teigen has opened up about her own struggles with infertility, and her use of IVF to conceive her children with singer John Legend. Many IVF Instagrammers are bringing sustained attention to these sensitive topics. But more funding, advocacy, and visibility are desperately needed, Collura said.
Sourcing drugs on social media shows no signs of slowing
Like so much of the IVF community's digital community, drug sourcing efforts are a good-faith operation motivated by a common struggle: infertility.
Patients know firsthand that their leftover hormones, which would otherwise go to waste, could be the thing that helps another person start their family.
People connect to address these issues on virtually every social platform. GoFundMe and Kickstarter campaigns are a common way to finance infertility treatment. Members of the Reddit r/IVF and r/infertility subgroups regularly post about their drug "donations." And bloggers share their advice on everything from choosing a clinic to sourcing medication.
Instagram has made the search easier — and more aesthetically pleasing — than ever.
When Heather Li, who conceived her son through IVF, recently polled her Instagram followers about where they sourced their fertility drugs, 15% of the 250 respondents said they had looked for medications on the platform.
Since she had her twins, Ashley is no longer on the medication market. But she sees herself as something of a "Santa" in the IVF Instagram community, connecting people with leftover medications to those in need.
Since her first IVF Instagram posts in 2018, Ashley has learned a lot about the platform: "It really moved from a post thing to a story thing," she said. "And it moved from blatant and upfront about what you want to hide it a little bit."
The dynamic is still evolving. Now, she says, "people are starting to catch on to that hashtag, too." But until affordable infertility treatment is widely available, the candy search will continue.
Read the original article on Insider