2024 UPDATE:Since starting the petition, it's become clear to me that temperature regulation is just one of many issues with forced mail-order pharmacies. Companies like Optum RX, CVS Caremark, and Express Scripts are very loosely regulated. Patients can face life-threatening delays, damaged medications, and poor customer service. They lack relationships with pharmacists, which are critical for people with chronic conditions. Even though a 2018 study shows people prefer independent pharmacies, they are closing their doors at an alarming rate.
Your support is needed more than ever – to give patients the choices they deserve and to hold poorly regulated mail-order pharmacies accountable.
*************Our Story*************
Our son received a life-saving liver transplant at the age of 2 from a 3-year-old little girl. His life depends on the potency and effectiveness of chemotherapy or immune suppression medications every 12 hours to prevent his body's immune system from fighting off his transplanted liver. In the past, mail-order pharmacy delivered his liquid oral medications in nothing but a plastic envelope on a 102-degree day on a hot, enclosed, non-temperature-controlled UPS truck. Shortly after, he went into liver rejection which could have resulted in complete liver failure or death. I speculated that the medication could have been too weak after the delivery of medications in high heat. I vowed never to risk his life with mail-order pharmacy again.
Recently, we were mandated or forced only to use mail order pharmacy in order to receive coverage for his life-saving medications. The package arrived in only a bag on a hot day without an ice pack. I now know that the hot non-temperature controlled enclosed delivery truck and mailboxes can reach temperatures up to 120-170 degrees. His labs elevated again afterward. My son wants to know, "Why would they do that?"
I contacted the manufacturer, who performs the testing, who informed me that my son's medications should be discarded and considered less potent once stored above 86 degrees as higher temperatures and freezing could result in lower potency.
I contacted the mail order pharmacy, who refused to replace or take back the medication. They said the law & USP Pharmacopoeia allows them to ship up to 104 degrees, although the manufacturer states it is not proven safe at these temperatures. However, I have received communication from USP Pharmacopoeia, who writes guidelines for storage, and they also said that the mail order pharmacy should follow the manufacturer's guidelines of 59-86 degrees for storage. Again, the trucks reach up to 170 degrees, much hotter than 104.
I contacted the FDA, which states that the mail order pharmacy should be using the manufacturer's guidelines that have been proven safe. Since the mail order pharmacies are regulated loosely by the State Board of Pharmacy, not the FDA, there was nothing the FDA could do.
My son's physician wrote an appeal and his transplant team has stated that they have tried to voice their concerns about this issue with their pediatric/child patients, and no one is listening! I made over 30 calls to the insurance company begging for them to please let us pick up my son's medications up at the local pharmacy, at which they are filled. The insurance company still denied the doctor's appeal for us to pick up my son's medications in the safest way. It was only when the Media became evolved that the insurance company budged.
I felt helpless and have united with many other pharmacists, physicians, patients, mothers and fathers, and caregivers who feel the same way. Helpless.
Mail order of prescription drugs should be a choice, not the only option of coverage.
Mail order pharmacies may appear to save money, but when my son ended up in the hospital after taking medications that could have been compromised by having lower potency, the cost of the rejection was thousands of dollars.
Also, people with chronic, complex conditions should always have the option of maintaining relationships with a pharmacist who knows their complex needs and medical history.
Only allowing mail order pharmacies for coverage is unethical and irresponsible. I share daily stories on my social media sites of patients suffering from a lack of choice.
We need your help to make mandatory mail-order an option, not a mandate.
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