Megan Becker stepped outside her Las Vegas house one evening in June 2020. She grabbed a package containing her medication. The medication is called Aimovig, a monthly injection to prevent debilitating migraine headaches.
It was around 90 degrees that day. The package arrived a day late. However, Becker discovered that the ice packs used to keep the medication cold had melted, leaving the medication warm to the touch.
Becker began purchasing Aimovig from a nearby drugstore shortly after it was released. But in 2019, her health insurance gave her a choice: switch to the Express Scripts mail-order pharmacy and get it for about $50 per month, or pay out of pocket for the prescription that costs more than $600 for each dose. Becker pushed to keep picking it up locally but gave up after two months of annoying phone calls with Express Scripts.
Loretta Boesing knows the consequences of this all too well. Boesing lives in Park Hills, a small community in the hills of eastern Missouri. The weather varies significantly from season to season.
When her son Wesley was two years old in 2012, he contracted the flu and became so ill that he required a liver transplant. The transplant went well, but lab testing revealed that Wesley’s body appeared to be rejecting the organ just a few months later. With her son gravely ill, Boseing tried to figure out why his body rejected the organ.
She recalled the last time his anti-rejection medication had been delivered to their home. The box had been left beside the garage, where it stayed for hours. Temperatures that day exceeded 100 degrees Fahrenheit, far beyond the drug’s recommended safe temperature range.
It is not uncommon to send drugs through the mail. Since the 1970s, the Department of Veterans Affairs has shipped prescriptions. However, the number of users has approximately doubled in the last 20 years, with federal data indicating that an estimated 26 million people receive their medication by mail. According to official survey data, the number of people utilizing mail-order pharmacies in the United States more than doubled between 1998 and 2017.
In-depth interviews with over 65 mail-order pharmacy clients nationwide indicated profound concerns about how their prescription is delivered — and no reasonable alternatives. Many people reported receiving medications in flimsy packaging with no temperature indicators, which can be dangerous. Temperature indicators can cost as little as a dollar per package. Others have had to beg pharmacies to send them replacement medications after receiving medication that they thought arrived too warm or cold.
Shortly after birth, Sophie Dean was diagnosed with Cystic Fibrosis. Cystic fibrosis (CF) is a hereditary multi-organ disease caused by mutations in the CF transmembrane conductance regulator (CFTR) gene. CF is a progressive disease that affects the lungs, liver, pancreas, and intestine. The leading cause of death among CF patients is respiratory failure. The anion channel protein CFTR is expressed in various epithelial tissues. CFTR deficiency alters ion transport equilibrium, deregulating fluid absorption and secretion processes in epithelial tissue such as the airways, resulting in mucus buildup and recurring bacterial infections.
The management of CF still heavily relies on symptomatic treatments. Those include chest physical therapy, cough assist treatments, and using an airway clearance vest. Medications commonly prescribed for CF include mucus-thinning medications, antibiotics, and anti-inflammatories.
She was two weeks old when doctors put her on a pancreatic enzyme to aid digestion. The medication worked, allowing her to gain weight and grow.
However, when she was eight years old, her parents’ health insurance required that they obtain her prescription through Express Scripts mail-order pharmacy rather than the specialty pharmacy that had previously sent it to them. According to Sophie’s mother, Erica Dean, instead of receiving the medication in an insulated box with a device that indicated if it was exposed to potentially harmful temperatures, Express Scripts sent it in a cardboard box or, in some cases, just a thin, gray plastic bag.
Unfortunately, the mail-order pharmacy didn’t tell them when Sophie’s medication came. They didn’t provide a tracking number either. As a result, it would sometimes remain on the family’s doorstep for hours in the North Carolina sun.
Sophie began experiencing painful stomach aches and rapidly lost weight. In the hospital, her symptoms improved. Sophie was able to receive the right prescription for three years. She no longer receives her medication by mail.
Many people criticized the excessively wide delivery windows. From Minnesota to Florida, people reported having to take time off of work to make sure that temperature-sensitive medications weren’t left on a doorstep or a driveway all day or, worse yet, sent back to a delivery warehouse if the recipient wasn’t there to accept delivery.
Insulin must be refrigerated and kept at a temperature between 36 and 46 degrees Fahrenheit until it is opened. However, Kim Munson of Lakeview, Minnesota, said that she has returned home to discover her daughter Kinsley’s mail-ordered insulin left on a sunny porch in July or spending hours by a snowbank in January. Munson’s January shipment was replaced by Express Scripts, but after numerous phone calls, she decided to give her daughter insulin from the July shipment and pray for the best.
State pharmacy boards oversee mail-order pharmacies, but officials across the country said they seldom, if ever, hear complaints about pharmaceuticals destroyed in transit. The majority of clients, according to customer interviews, were unaware of their state pharmacy board and simply had no idea where to file complaints.
On a steamy Missouri day in May 2018, when her son’s anti-rejection medication was delivered, Loretta Boseing was concerned that it would not be safe to administer to him. She contacted the FDA after becoming frustrated with what she said were CVS Caremark’s inconsistent justifications for why it was transported without temperature control.
In an audio clip obtained by NBC News, an FDA drug information specialist explained to Boesing that state pharmacy boards, not the agency, manage difficulties with sent prescriptions. The FDA expert did however emphasize that Boesing’s remarks weren’t out of the ordinary.
Strict guidelines should be enforced for mail-order pharmacies. For some people losing access to their medications is a matter of life or death. Safe, affordable medications need to be available because people will die without them! The United States needs affordable healthcare for all before this crisis worsens.
Sources:
Allan, Katelin M., et al. ‘Treatment of Cystic Fibrosis: From Gene-to Cell-Based Therapies’. Frontiers in Pharmacology, vol. 12, Frontiers Media SA, 2021, p. 639475.
Kaplan, Adiel, et al. “Millions of Americans Receive Drugs by Mail. but Are They Safe?” NBCNews.Com, 8 Dec. 2020, http://www.nbcnews.com/specials/millions-of-americans-receive-drugs-by-mail-but-are-they-safe/.
Smith, Alex. “Extreme Temperatures May Pose Risks to Some Mail-Order Meds.” NPR, 7 Jan. 2019, http://www.npr.org/sections/health-shots/2019/01/07/673806506/extreme-temperatures-may-pose-risks-to-some-mail-order-meds?utm_source=facebook.com&utm_medium=social&utm_campaign=npr&utm_term=nprnews&utm_content=20190107.