Millions of Americans receive drugs by mail. But are they safe?
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.”
A shipment of Megan Becker’s migraine medication left at her door in late August. (Megan Becker)
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.
A delivered package of refrigerated medication in Millerton, N.Y. (Kim Yarnell)
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?”
After receiving organ transplant medication that felt hot, a mail-order pharmacy customer posted a photo to social media of a home thermometer reading inside the pill bottle. (Obtained by NBC News)
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.
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)
“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.
A bottle of Sophie Dean’s pancreatic enzymes, which she takes to help treat cystic fibrosis. (Kenzi Abou-Sabe / NBC News)
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.
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.
Filed under: General Problems
Just watched this on the NBC News and it is amazing as to what people have to deal with, since they didn’t ask for it in the first place.