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Millions of Americans receive drugs by mail. But are they safe?
Millions of Americans receive drugs by mail. But are they safe?
Many mail-order pharmacy customers feel trapped in a system that has left them with crushed pills, damaged vials and lifesaving drugs exposed to extreme weather.
Bianca Bagnarelli / for NBC News
Bianca Bagnarelli / for NBC News
By Adiel Kaplan, Kenzi Abou-Sabe, Kit Ramgopal and Cynthia McFadden
December 8, 2020
One evening in mid-June, Megan Becker stepped outside of her Las Vegas home and scooped up a package containing her medication, a monthly injection to prevent debilitating migraines.
It was a sweltering night – the temperature hovered just below 95 degrees. When Becker opened up the package, which arrived a day late, she found that the ice packs were melted and the medicine, which is supposed to be refrigerated, was warm to the touch.
“They literally just dump the box on my front stoop, regardless of the weather,” Becker, an English professor at the University of Nevada, Las Vegas, said. “It’s just such expensive medication and it seems like such a careless way to deliver it.”
Shortly after the drug, Aimovig, hit the market, Becker began picking it up from a nearby pharmacy. But last year, her health insurance confronted her with a choice: switch to the Express Scripts mail-order pharmacy and get it for roughly $50 per month, or pay out of pocket for the more than $600-per-dose medication.
Becker fought to keep picking it up locally, but said she gave up after two months of what she described as maddening calls with Express Scripts.
“I really, really, really did not want to get it this way and I was not given an option,” she said.
Millions of Americans receive their medications by mail but many, like Becker, find themselves forced to do so by their insurance plans or face the prospect of paying exorbitant amounts for the same drugs.
An NBC News investigation found the growth of mail-order pharmacies has caused many people to feel trapped in a system that has left them with crushed pills, damaged vials and lifesaving drugs exposed to extreme weather.
Interviews with more than 65 mail-order pharmacy customers across the nation revealed deep worries over how their medication is delivered — and no affordable alternatives. Many reported receiving drugs in flimsy packaging without temperature indicators, which can cost as little as a dollar per package. Others have had to plead with pharmacies to send them replacement drugs after receiving medication they thought arrived too warm or cold.
The industry is massive, generating billions in annual sales, but it occupies a gray area with little regulation and even less enforcement, NBC News found.
“It’s a quagmire,” said Georgia state Rep. Ron Stephens, a pharmacist, who has sponsored multiple bills to increase patient choice when it comes to pharmacies. “If they’re sending it without a temperature strip, and you’re the recipient of insulin or a lifesaving drug, you’re taking your life into your hands,” the Republican said.
Extreme temperatures can degrade medications, potentially rendering them unsafe or ineffective for patients. Industry guidelines make clear that pharmacies should package and ship medications in accordance with their recommended temperature range. But many mail-order pharmacy customers have no way of knowing whether their medicine has gone too far outside that range for too long.
“[Patients] just might think that they’re getting sicker or that it might be their fault,” said Erin Fox, director of drug information at University of Utah Health, who researches drug quality and shortages. “But it’s important to think about, ‘Could it be my medicine that is maybe not of high quality or potentially got ruined with high temperatures?”
Proving that a drug had become ineffective or made someone sicker because it was exposed to extreme temperatures is nearly impossible, experts say. By the time such a possibility is considered, the medication itself would likely have already been consumed or thrown away, preventing it from ever being tested. Plus, experts say, without temperature tracking during shipment, there’s no way to know how the medication may have been affected by the conditions inside a delivery truck or the temperature outside someone’s home.
But some people believe they or their loved ones have experienced a decline in health after receiving medications through the mail, including the family of a young girl from North Carolina.
‘You’re not a pharmacist, ma’am.’
Shortly after she was born, Sophie Dean was diagnosed with cystic fibrosis.
She was two weeks old when doctors put her on a lifesaving pancreatic enzyme to help her digest food and absorb nutrients. The medication worked, allowing Sophie to gain weight and grow.
But in 2015, when she was eight, her parents’ health insurance started requiring that they receive her medication through Express Scripts mail-order pharmacy rather than the specialty pharmacy that had been sending it to them previously.
Watch the investigation on TODAY.
Instead of receiving the medication in an insulated box with a device that indicated if it was exposed to potentially harmful temperatures, as her family had done previously, Express Scripts sent it without any kind of temperature indicator in a cardboard box or often just a thin, gray plastic bag, Erica Dean, Sophie’s mother, said.
And because the mail-order pharmacy didn’t notify them when the package arrived or provide them with a tracking number, the package would sometimes sit on the family’s porch for hours, baking under the North Carolina sun.
Sophie began suffering from debilitating stomach aches. Her appetite evaporated, her mother said, and her body mass index plummeted.
Sophie Dean, 13, has taken pancreatic enzymes with meals since she was two weeks old. (Kenzi Abou-Sabe / NBC News)
Sophie Dean, 13, has taken pancreatic enzymes with meals since she was two weeks old. (Kenzi Abou-Sabe / NBC News)
“I started to think, ‘OK, wait a minute.’ We were told when she was two weeks old, ‘Don’t even keep the enzymes in the car because it’s not safe. They won’t be as effective,’” Dean said.
She called the pharmacy asking them to ship it a different way, but she said an Express Scripts representative told her, “You’re not a pharmacist, ma’am.”
Dean said she called again and again. “It was a script, every time. I knew exactly what they were gonna say every time I called,” she said.
“My option was either fill it like they tell me to, or sell my house and my kids and my organs,” Dean said, “That’s just one medication she’s on, and not the most expensive one.”
And then something strange happened. When Sophie landed back in the hospital with severe lung inflammation in 2017, she regained her appetite.
“The doctor is baffled,” Dean recalled. “And he comes in and he says, ‘Ms. Dean, I don’t understand. Enlighten me. What’s going on?’”
Dean explained that after Sophie was placed on the hospital’s supply of enzymes, her discomfort during mealtimes had all but disappeared.
“At that time, my take was the enzyme source needed to be reviewed,” Dr. Patrick Sobande, Sophie’s then-doctor, said in an email.
Soon after, Sophie’s family secured an exception allowing them to fill the prescription at a local pharmacy. She continued gaining weight, and in the last three years, her mother says she hasn’t had the same digestive issues.
Definitively linking Sophie’s digestive problems with how her medication was delivered would be nearly impossible, multiple pharmacological experts said. The medication is gone — ingested by Sophie long ago — and can’t be tested for changes in potency before and after transit. And there are other potential explanations for her discomfort that aren’t easily disproved.
Cystic fibrosis specialists have long warned families about pancreatic enzymes’ sensitivity to heat.
“Even before mail-order pharmacies, when it came to enzymes, we very explicitly told families never to leave them in their cars, never to leave them in a hot spot in the house,” said Dr. Greg Sawicki, an associate professor of pediatrics at Harvard Medical School who runs the Cystic Fibrosis Center at Boston Children’s Hospital. “It could have very much been that the enzymes were denatured or not working effectively because they were not being stored or shipped properly.”
When asked about Dean’s and Becker’s cases, a representative for Express Scripts Pharmacy said that when patient issues arise, “our team works quickly to resolve them, just as we did with these patients.”
In an interview, Wendy Barnes, Express Scripts’ head of home delivery, said all medications are shipped with tracking information and if a patient’s drug is damaged during transit, the company will expedite a replacement to them, which is what happened with Becker’s warm migraine medication.
“Everything we do is to serve our patients. We want nothing more than for them to have the medication that they need in a timely and efficacious manner,” she said.
“While we are getting it right the majority of the time, any time we’re not, we absolutely need to do better,” she added.
As for Dean’s and Becker’s inability to fill their prescriptions locally without paying out of pocket, Barnes said Express Scripts is not the one imposing the requirement to fill long-term medications by mail. “Those decisions are ones that are often made by someone’s employer or their health plan,” she said.
In a statement, Express Scripts said that only about six percent of its patients are in plans like Dean’s where patients have to use mail service for maintenance medications or pay out of pocket. The rest can choose to fill prescriptions at a local pharmacy, Express Scripts said, but it will likely cost about 30 percent more than doing so by mail.
‘Sorry for the inconvenience’
Sending drugs by mail is not new. The Department of Veterans Affairs has been shipping prescriptions since the 1970s. But in the last 20 years, the number of users nationwide has roughly doubled, with federal data showing an estimated 26 million people receiving their medication by mail.
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Much of how prescriptions work in the U.S. is now determined by companies like Express Scripts — called pharmacy benefit managers — which work with insurers and employers to negotiate drug prices, and often operate their own mail-order pharmacies. Many patients are effectively forced onto their services, particularly those with long-term prescriptions for chronic conditions, either by financial incentives to fill those prescriptions by mail or because coverage is withheld if they don’t.
NBC News reviewed letters like this one from Express Scripts, dotted with notes a patient took during phone calls, informing them that their prescription would no longer be covered by their health insurance unless filled through the company’s mail-order pharmacy.
“For these medications, convenient home delivery is required by your plan. If you choose to continue filling the medications above at a retail pharmacy every month, unfortunately, you’ll have to pay the full cost.”
This one informing a patient they would pay full cost unless they switched to OptumRX’s home delivery or withdrew from the program.
“After 2 refills, you will have to pay the full cost, if you don’t switch to a 3-month supply and fill through OptumRx home delivery. You can continue to fill a 1-month supply at your current retail pharmacy, but you must disenroll from the Mail Service Member Select program.”
And another from CVS Caremark, announcing that, going forward, refills for a long-term medication could only be filled by mail or at CVS pharmacies.
“We are writing because you have reached your 30-day refill limit and must start filling the medications listed below in 90-day supplies at CVS Pharmacy or through CVS Caremark Mail Service Pharmacy. If you fill them anywhere else, or in 30-day supplies, they will no longer be covered and you’ll have to pay 100 percent of the cost.”
The ability to receive drugs by mail is a lifeline for many, especially the homebound, the elderly and rural residents. Some customers said that despite being skeptical at first, they now prefer the convenience of getting their drugs shipped to their front door.
But pharmacy experts said the safety of mail-order drugs remains an open question, particularly because few regulators and academics have studied the effects.
“Nobody has performed a systematic study to know whether those medications are effective or not,” said Mansoor Khan, a professor of pharmaceutical sciences at the Texas A&M College of Pharmacy and a former Food and Drug Administration director of product quality research.
The pharmacy benefit managers that operate the three largest mail-order pharmacies — Express Scripts, CVS Caremark, and OptumRx — took home 72 percent of mailed prescription revenue in 2019, to the tune of $113 billion, according to one industry analysis. They all ship drugs through regular delivery services, often in the cargo area of un-air conditioned trucks, which can hit temperatures well over 100 degrees in the summer.
Like Express Scripts, CVS Caremark and OptumRx said their mail-order services are cheaper, more convenient and provide longer-term refills than retail pharmacies, leading to more patients taking medication properly.
The companies all said they also use specific packaging for temperature-sensitive medication which protects against extreme highs and lows on the medication’s journey to a patient’s door.
The Pharmaceutical Care Management Association, a trade group that represents pharmacy benefit managers, said that its members use proprietary software to monitor weather and map the potential temperatures a sensitive package may be exposed to on its delivery route, and that their mail-order pharmacies are safe, convenient and reliable.
Patients told a different story.
I would give anything to just be able to pick up the prescriptions from our local pharmacy instead of worrying so much about the temperature of medications being shipped to me every three months.
Utah mother who receives her son’s insulin and several medications for her daughter by mail
I have no car, no driver’s license. I need my medication delivered to me, otherwise I’ve got to plead and beg all my family and friends to go get it. And if they can’t deliver it to me the way it’s supposed to be, I’m pretty much screwed.
Missouri woman who receives her psoriatic arthritis medication by mail
I recently had an issue with mail-order insulin … My doctor and I believe the shipment was frozen. [The pharmacy] said to me, ‘We are sorry for the inconvenience.’ Inconvenience? I could have died. Without this medicine, I will die.
Michigan woman who receives insulin by mail
‘Incredibly infuriating’
Ten local pharmacists in eight states said they also frequently deal with the consequences of forced mail order. The pharmacists described longtime customers coming into their stores to ask why their insurance will no longer cover in-person refills. Others ask if it is safe to take medication left on a doorstep for hours, or beg for emergency refills while waiting on a delayed delivery.
“I do everything I can to help patients avoid mail order,” Terry Traster, who owns a pharmacy serving several small towns in rural Illinois, said. “What I am most worried about is they will get drugs that don’t work, or — what could even be worse — instead of not working, could actually be harmful because they degrade.”
Most drugs can be subjected to temperatures higher or lower than their labeled guidelines for short periods of time, experts say.
One of the challenges, patients said, is not knowing if a package will arrive when they’re not home, potentially leaving it exposed to the elements for hours. Only about a third of the more than 65 mail-order pharmacy customers interviewed said they were offered signature delivery. Of those, several said that the option cost extra.
A UPS driver, captured by a doorbell camera, leaves a package of refrigerated medication on a Florida doorstep in February 2020. (Denise Church)
A UPS driver, captured by a doorbell camera, leaves a package of refrigerated medication on a Florida doorstep in February 2020. (Denise Church)
A UPS driver, captured by a doorbell camera, leaves a package of refrigerated medication on a Florida doorstep in February 2020. (Denise Church)
A UPS driver, captured by a doorbell camera, leaves a package of refrigerated medication on a Florida doorstep in February 2020. (Denise Church)
