After Her Son Nearly Rejects Transplanted Liver, Missouri Woman Campaigns Against Mail-Order Drugs | KCUR

After Her Son Nearly Rejects Transplanted Liver, Missouri Woman Campaigns Against Mail-Order Drugs

Dec 19, 2018

Shivering outside her home on a freezing day in Park Hills, Loretta Boesing explains that weather in eastern Missouri can be all over the map.

“It’s crazy,” Boesing says. “We sometimes experience temperatures like they would feel in Arizona. Sometimes we experience temperatures like they would feel up north.”

Boesing worries about how those temperature extremes affect the prescription drugs that many people receive via mail-order delivery.

Mail order is poised to expand rapidly due to new medications and new competition entering the market. But Boesing wants insurers and mail-order companies to reconsider their practices and policies in light of temperature concerns.

It all started with a health scare involving her son Wesley.

In 2012, when Wesley was two years old, he got so sick from the flu that he needed a liver transplant.

The transplant surgery went well, but a just a few months later, lab tests showed Wesley’s body appearing to reject the organ.

Boesing felt devastated and guilty.

“I feel the extra duty of not just protecting his life but the life that lives on inside him,” Boesing says.

Wesley didn’t lose his new liver, but during his weeks in the hospital Loretta’s mind raced thinking about what might have gone wrong.

She remembered that when his transplant medications were last delivered, they had been left outside by the garage, where they sat for hours.

Temperatures that day were in the triple digits, far higher than the safe temperature range listed on the drugs’ guidelines. At the time, she hadn’t worried about it.

“Even though I see plainly on the bottle that it says ‘Store at room temperature,’” Boesing says. “I still thought, ‘Ah, someone’s making sure it’s safe.’”

But after Wesley’s setback, Boesing swore off mail order pharmacy altogether, and this year she created a Facebook group for patients who are worried about mail-order drugs.

Loretta Boesing started a Facebook group and online petition for people concerned about mail order pharmacy practices.
Credit Alex Smith / KCUR 89.3

She also started a petition urging all insurers should give their customers easy access to retail pharmacies – unless mail-order companies can prove that drugs are getting to patients at the right temperatures.

'Shipping down to a science'

The big three mail-order companies – Express Scripts, CVS Caremark and OptumRX – insist that’s not a problem. They say they’ve got shipping drugs down to a science.

Inside an enormous OptumRX warehouse in a Kansas City suburb, an endless line of orange prescription bottles flies along conveyor belts while pharmacists scan barcodes and technicians refill bins of pills.

Lead pharmacist Alysia Heller explains that this shipping behemoth, which sends out up to 100,000 prescriptions a day, includes a system to account for weather.    

“If there’s an extreme heat situation where a products is going into hundred-plus degree weather, the system will tell the technician to add an extra ice pack because we’re monitored the zip code and the weather in that area,” Heller says.

But at OptumRX and across the industry, this kind of temperature-controlled shipping is usually reserved only for a small number of drugs like some insulins or hepatitis C drugs that have specific refrigeration requirements.

Standard room temperature medications, like most blood pressure or cholesterol drugs, which make up the vast majority of prescriptions shipped, are typically sent in bubble mailers without any temperature monitors.   

Stephen Eckel, a pharmacy professor at the University of North Carolina–Chapel Hill thinks those practices can lead to some drugs being damaged.

“A lot of people enjoy the convenience of mail order, but there are some risks they’ve got to understand,” Eckel says.

He says it’s possible that drugs in oral suspension form, like the ones Wesley was taking, could be damaged by exposure to extreme heat or cold.

But Eckel thinks it’s just a matter of time before mail-order pharmacies will expand their use of temperature controls and monitoring to non-specialty drugs.

Overblown concerns?

Pharmacy consultant Adam Fein points out that many states already require insurance companies to offer access to retail pharmacies if customers prefer. He says the temperature concerns are overblown.

“We have literally billions and billions of prescriptions that have been dispensed by mail over many years without evidence of widespread harm,” Fein says.

Some room temperature drugs are approved to spend up to 24 hours in temperatures from as low as the upper 50s to as high as 104. But scientists simply don’t know what happens to many medications in more extreme temperatures, like those left on a freezing porch or in the back of a sweltering truck.  

In fact, a few studies suggest that some inhalers or drugs like antibiotics can lose their potency under extreme weather conditions.  

Many industry experts think mail order pharmacy is on the cusp of major growth driven by the development of new specialty drugs, especially biologics, which often come with a high price tag and are often not handled by retail pharmacies.

Competition in the industry is already heating up with Amazon’s acquisition of online pharmacy PillPack and the recent partnership of Walgreens and FedEx to offer next-day medication delivery.

Fein thinks more temperature controls and monitoring would do little more than drive up costs in an industry that’s been successful in large part due to low operating costs.

But after collecting more than 76,000 signatures, Loretta Boesing, whose son originally received his medications from Walgreens Specialty Pharmacy, says she’s convinced that a larger health problem is being shrugged off.   

Missouri’s Board of Pharmacy currently requires that pharmacies store and transport medication in adherence with manufacturers’ guidelines, as outlined in the United States Pharmacopeia. But it plans to review its mail-order prescription policies nest month and has invited Boesing to testify.

In the meantime, Boesing has gotten a waiver that lets her get Wesley’s medication at a specialty pharmacy in Saint Louis.

And after connecting with patients all over the country, she says her advocacy is no longer just about him.

“I don’t want my son to have to receive special treatment,” Boesing says. “I want everyone to have access to safe medications.”  

Clarification: This story has been clarified to indicate that Wesley Boesing originally received his drugs from Walgreens Specialty Pharmacy.

Alex Smith is a health reporter for KCUR. You can reach him on Twitter @AlexSmithKCUR.