Over-priced drugs are driving people to "rogue" online pharmacies — sometimes with deadly results

When 14-year-old Alexander Neville got into a funk in June of 2020, his mother, Amy, figured it was a symptom of puberty. A global pandemic had just been declared, and she allowed Alexander to get on Snapchat so that he could stay in touch with friends, with whom hangouts fewer than six feet apart had been prohibited. It was a tough time to be a teenager. 

Amy describes Alexander as brilliant and intense, a skateboarder and a young entrepreneur who ran his own eBay shop selling his old toys. Alexander was an empath, she said, but this week, he seemed off.

When Alexander told Amy he was acting differently because he was taking oxycodone obtained through someone on Snapchat and that it was starting to have a “hold on him,” she called a local treatment center the next day to try and get him seen by professionals who could help. But during the next 24 hours, while the center was putting together recommendations for him, Alexander took a pill that was contaminated with fentanyl, a powerful opioid, which caused him to fatally overdose. 

“The thought of Alex dying did not even occur to me,” Neville told Salon in a phone interview. “It just didn’t make any sense.”

A growing number of people are ordering medication through illicit online sources, sometimes with fatal consequences. Last month, the FDA issued a statement warning against the dangers of potentially laced or fake drugs purchased from “rogue” online sources, claiming "Buying prescription drugs from rogue online pharmacies can be dangerous, or even deadly."

But there’s still a long way to go in apprehending illicit sellers, let alone tackling the root causes driving folks to the internet to buy medicine in the first place. The problems spurring people to self-diagnose and self-medicate stem from pharmaceutical price-gouging, drug shortages and an overall lack of medical access and stigma toward those who struggled with mental health or substance use.

The National Association of Boards of Pharmacy (NABP) has tallied 40,000 drug sellers online and calculated that 96% are operating illegally. The majority of these online marketplaces are considered unlawful because they don’t necessitate prescriptions to access prescription drugs or possess the required license to sell to consumers in certain regions. But that isn't stopping them from doing business anyway. However, an estimated 10% of these sources are selling substandard medications that can be dangerous or even fatal, said Dr. John Hertig, a pharmacist and member of the Alliance for Safe Online Pharmacies.

In addition to fatal poisonings or contaminations like what happened to Alexander, buyers shopping online risk getting medicines that have bad interactions with other drugs they’re taking or getting something like a sugar pill that is completely useless.

“Maybe your son got into a car accident and just to get them through, they ordered a Percocet, or maybe they're stressed because of an upcoming exam and so they order Xanax, but the problem is, those medicines are then laced with fentanyl,” Hertig told Salon in a phone interview. “Every single person that goes online [to buy medicines from rogue pharmacies] is at risk of this because of the significant nature of the sale of these products via online drug sellers.”

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Although people have been selling illicit substances online since the internet began, data suggest the problem is getting worse year over year, with a particular rise during the COVID-19 pandemic. The introduction of fentanyl into the street drug supply has made the situation more dire: Among children, deaths from synthetic opioids like fentanyl increased by 30-fold in 2021 compared to 2013, when fentanyl began circulating in the drug supply, according to research published in JAMA Pediatrics last May. In 2021, the Drug Enforcement Agency (DEA) warned against a flood of counterfeit pills introduced into the drug supply that contained fentanyl.

In 2008, the Ryan Haight Online Pharmacy Consumer Protection Act, named after a teenager who died from fentanyl overdose, was passed to prohibit the sale of controlled substances online without a prescription. Various other pieces of legislation have been passed or proposed in the decade after in an attempt to regulate and prevent the sale of illicit or contaminated drugs, including the Cooper Davis Act, which was also named after a child who died from fentanyl poisoning. This legislation, proposed earlier this year, would require social media platforms to report drug activity to the DEA immediately.

However, the number of illegal pharmacies selling products online has remained relatively consistent over the years, despite efforts from law enforcement to shut them down. When the Department of Justice filed charges against Google for consenting to illegal online pharmacies purchasing ads on its websites, companies turned to search engine optimization and social media to promote their products instead, according to a 2022 NABP report. Then, when credit cards restricted the sale of illicit products through their networks, many of these companies turned to cryptocurrencies.

Some of these illicit sites look more official than legitimate pharmacy websites, making it difficult for some consumers to know whether their medications are legitimate. Plus, many rogue pharmacies operate outside of U.S. jurisdiction, making enforcement and policing challenging. Others pop up with different domain names after one is shut down. As a result, policing them has become a bit of a game of whac-a-mole hardly different than attempts to shut down meth labs or stop international drug trafficking.

Moreover, the features social media platforms use to ensure privacy between users like encrypted messaging or disappearing content can be exploited by these sellers, according to a report released earlier this year from the Colorado Department of Law. Making matters even more challenging is that some social media companies don’t respond to requests for data in investigations related to investigations in time for it to be useful, per the report.

“Often drug sellers are active on multiple social media platforms, internet sites and dark web accounts simultaneously, and they break up their transactions as multiple platforms in order to evade detection,” the report states.

As a result of the challenges in policing these sites, other efforts are being made to tackle the root causes leading more and more Americans to turn toward rogue online sources. More than two in five U.S. adults are uninsured or underinsured, but nearly half of U.S. adults suffer from at least one chronic disease. 

But medication treatments may be prohibitively expensive, or people may live in pharmacy deserts where they can’t access them. Many people seeking an abortion in states that have outlawed it have turned to online pharmacies to order abortion pills like misoprostol and mifepristone, for example. Meanwhile, other patients who have searched dozens of pharmacies to try and fill their Adderall prescriptions as the amphetamine shortage stretches into its second year may be desperate to find something that can help.

“People might have to be on medication for the rest of their lives, and you can easily imagine that they would want to try to save costs,” said Sachiko Ozawa, Ph.D., an associate professor at the University of Carolina Eshelman School of Pharmacy who studies substandard and falsified medicine. 

“The lack of financial protection for medical care in the United States is a huge problem, and that's causing people to make risky choices like this in order to save money and make sure that they can afford the medications that are life-saving for them,” Ozawa told Salon in a phone interview. 

In recent years, state and city governments have sued major pharmaceutical companies like Eli Lilly, Sanofi and Novo Nordisk for price-gouging drugs like insulin. These companies have been accused of making obscure deals with pharmacy benefit managers that end up hiking up prices for the consumer, said Dr. Stephen Eckel, the director of pharmacy innovation services at the University of North Carolina Medical Center. Insulin rationing can often lead to death.

“That patient could be making a decision between eating or other important expenses versus their medication expenses, and in that situation, patients might need to look for alternative methods to find cheaper medication,” Eckel told Salon in a phone interview. “Because most people are used to going to the internet to purchase commodity items and getting them through the mail, the next logical step is [to ask yourself], ‘Could I find it cheaper on the internet?’”

In response to questions about what is being done to regulate and shut down illicit rogue pharmacies, an FDA spokesperson cited the agency’s BeSafeRx campaign, which highlights red flags that signal an online pharmacy may be illegitimate, including not requiring a prescription, not having a U.S. or state board license, and not having a pharmacist on staff to answer questions. 

“In general, these products pose significant risks to patients because they have not been reviewed by the FDA before they are marketed to ensure safety, effectiveness or quality, and they are obtained without a prescription or prescriber oversight,” the spokesperson told Salon in an email.

The NABP has a website where consumers can check if online pharmacies are legally registered to sell quality products to U.S. consumers, as does Legit Scripts. In general, any site with a “.pharmacy” domain can be considered safe and legitimate, according to the NABP. Hertig said he is also developing curricula for medical professionals to learn best practices regarding how to counsel patients on this issue.

“Our healthcare professionals are relatively underequipped to educate and counsel patients on this issue,” Hertig said. “How can we expect our patients to make good decisions if our healthcare community is undereducated?”

In Orange County, California, where Alexander died, fentanyl-involved overdoses were the top reason for death among teens in 2022. Many of the children involved in these deaths took the ultrapotent opioid unknowingly after ordering it online from an illicit source. 

Since Alexander’s death, Amy Neville has put her energy into raising awareness about the risks of buying illicit online drugs, speaking to government officials and healthcare leaders in addition to groups of middle school and high schoolers around the country. She also created the Alexander Neville Foundation, which provides educational materials for families regarding social media and drug use. She is currently pursuing litigation against Snapchat along with over 60 parents whose children died by illicit drugs allegedly obtained through the social media platform.

Snapchat installed new policies in 2021 that redirect people using certain phrases related to drugs to educational materials. It also added safeguards to make it more difficult for strangers to contact teenagers, according to a Snapchat spokesperson.

“We continually expand our support for law enforcement investigations helping them bring dealers to justice and we work closely with experts to share patterns of dealers' activities across tech platforms to more quickly identify and stop illegal behavior,” the Snapchat spokesperson told Salon in an email.

Still, illicit sellers are continuing to find loopholes, and adjustments like these haven’t been enough to stop both adults and children from buying products online. 

“Kids are out there, they are feeling down or blue or whatever it is, they put their symptoms on the internet, and it shoots you back: Here’s what this could possibly be, and here’s some prescriptions that could help you with that,” Neville said. “People think they are getting real prescriptions and that is just not the case.”