Here are a few of the quoted patient stories that were shared:
In Missouri, Loretta Boesing received a shipment of a liquid immunosuppressant medication for her son, who had a liver transplant, in 102-degree weather in only a plastic envelope. Soon after, his health began waning, and his body began to reject the liver. During a two-week hospital stay, he began receiving the medications from the hospital pharmacy instead and began to recover.
Several years after the ordeal, Ms. Boesing’s insurance changed, and the new services were administered by CVS Caremark. She filed several appeals to the company to allow her to continue picking up the medication at the hospital pharmacy. But the request was denied, she said, and the medication again arrived without an ice pack, warm. She said her son’s liver lab tests had begun to elevate again.
She wept on a call with a CVS Caremark representative, which she recorded and shared with The Times. “I am begging you right now: Please do not let me lose my son,” she says on the call.
Rebecca Nierengarten, 39, of Maplewood, Minn., was in medical school when she fell ill with a dangerous autoimmune disease that causes extreme muscle weakness. She said her insurance company had forced her to switch from hospital infusions of an immunoglobulin product called Privigen to home delivery of the drug, and every summer, her condition worsened so drastically that she could not stand up from a chair without assistance and struggled to swallow.
“It’s a protein medication — proteins denature with heat,” she said. “If you have a biology degree, you know that.”
Extreme temperatures can be an issue in the winter months as well. Cheri Hicks, 55, an interior designer in Grand Rapids, Mich., who has Type 2 diabetes, noticed one day in November that her blood sugar had skyrocketed, even though she had kept up her diet and good hydration. After her doctor gave her a sample insulin pen, her blood sugar fell, suggesting that the mail-order pack — which had been delivered three days late because of a snowstorm — had most likely frozen and then thawed, damaging the insulin.
Thank you, heroes!
The mail-order pharmacy claimed to have an algorithm that tracks temperature, but at one point in the article, Optum admitted that they do not actually monitor the exact temperature of the medications. For most medications shipped in bags, many mail order pharmacies either have a non-functional algorithm or one that is not used. Many of us have found that when we ask pharmacists or local independent pharmacies to contact the drug manufacturer, the manufacturer indicates that the medication is not safe to take if exposed to unsafe temperatures during shipping. From what I’ve observed, mail-order pharmacies seem to rely on outdoor temperatures rather than the temperatures inside hot mailboxes and delivery vehicles that are often 20 to 60 degrees hotter.
CVS also made a similar claim to The New York Times regarding my son’s situation, but CVS did not offer any protection from temperature extremes. Despite immediately contacting the drug manufacturer, who stated that my son’s medications should not be exposed to temperatures of freezing or above 86°F, CVS still stated that they would still only ship my son's medications without protection as it was a room temperature medication.
Most drug manufacturers would not consider it safe to store medications in trucks and mailboxes where temperatures can reach 120-170°F. If we had an FBI investigating these white-collar crimes, an FTC protecting consumers, and an FDA regulating mail-order pharmacies—rather than relying on underfunded State Boards of Pharmacy, which are often staffed by pharmacists with conflicts of interest—we might see better protection and justice.
Today, patients are mostly on their own, fighting back against the many claims and deception when they contact their mail order pharmacies. The pharmacists will claim, “It should be okay.” “We can’t control UPS.” “Once it leaves our pharmacy, it’s no longer our responsibility.”
Pharmacists that have spoken about temperature issues to Boards of Pharmacy in some states have been retaliated against in the form of inspections that resulted in fines. Guess who makes up a lot of pharmacy board members? Executives that profit from unsafe temperature storage of mail order medications or pharmacists that are reimbursed from these same companies.
It’s exhausting and tiring. We're not giving up! Your voices will help us create change.
If a patient wants to take the many risks with mail order pharmacy, they should be able to. No one should be forced.
There is legislation to stop the forcing mail order pharmacy. Please contact your federal representative to have them co-sponsor HR 9096. You can read the full bill here.
Also, we are protesting at Optum RX in Eden Prairie, MN on September 13th! The protest is against the any of the harmful practices of Optum RX from the steering to mail order or harmful prior authorizations. Please sign up to join us. Register here.
Thank you,
Loretta Boesing, Patient Advocate
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Email Loretta@uniteforsafemeds.com