Our son, Wesley, was in tears with me yesterday. It was tough as I read the email from the state board of pharmacy that said that they made the determination that the mail-order pharmacy was not in violation of the Pharmacy Practice Act. Although, I sent them a recording with the mail-order pharmacy saying that they ship all medications that are supposed to be stored at room temperature, including lifesaving transplant medications like my son's, in only a plastic bag/bubble mailer. You can hear this in the video link I will share. (The recordings are about room temperature medications).

The State Board of Pharmacy is supposed to regulate the mail order pharmacy Not the FDA. Missouri law says that the mail order pharmacy must have policies and procedures to ensure medications are kept in the manufacturer's guidelines. What good is having these laws if there is no enforcement or punishment for not following them? Our independent pharmacies would be fined if they let medications go outside of proven safe temperatures for even a few hours. Why the double standard? After this, my fear is that the state board may actually loosen regulation and rewrite the law to protect patients less as they are partially made up of members from companies who benefit from mail order pharmacy.

For those of you who are new, my son had a liver transplant at the age of 2 after getting the flu. His body relies on medications every 12 hours to keep him alive. Potency is important. Children's liquid oral medications, along with many other room temperature medications may lose potency in extreme heat and freezing temperatures. After shipping his medications in 102-degree heat in a plastic bag he went into transplant rejection.

This was the first time I grew concerned about mail order pharmacy. I vowed to never to use mail order pharmacy unless they could prove it was safe. Recently, mail order pharmacy was the only option for us to receive coverage of his life-saving medication. Again, his meds shipped in only a bubble mailer on a hot day. His labs went up afterward. The manufacturer who does the testing said to throw the medication away. It should be considered unsafe outside of 59-86 degrees. Per the manufacturer who does the testing, the medications should not be placed next to an ice pack and shouldn't be in high temperatures or else it can lose potency. 

I've connected with UPS drivers who have said the trucks are well into the 100s of degrees on an 80-degree day. 

Why not just let us pick up the medications the safest way and protect our medications as much as possible from the environment?

We either need regulation and ENFORCEMENT of mail order pharmacy or the manufacturer needs to begin testing each drug in temperatures from far below -30 degrees to 170 degrees. 

To regulators: Allowing PBMs (pharmacy benefit managers) like Express Scripts, CVS, and Optum RX to only give many of us coverage of lifesaving medications if we put them on a hot and freezing truck, replace our face to face relationship with our pharmacist who has known us for years with a 800 number, risk needless delays, medications getting stolen, and offer no modeling of how to administer some difficult medications like injections has put many patients lives at risk!

The rules of monitoring medication temperatures are not enforced. There isn't a monitor on most of the packages. The inside of the trucks and mailboxes are not monitored for temperatures INSIDE of the hot and freezing non-temperature controlled truck. The outside temperature isn't accurate to go by. I'm begging regulators please PLEASE protect us! We need you NOW. 

I have a message to Optum RX, Express Scripts, CVS (who often only allow coverage of some medications through their owned mail and retail pharmacies). To these 3 that own 80% fo the market, Pillpack, and any other mail order pharmacy thank you for trying with refrigerated medications that you often put in a cooler with ice packs (although delays and leaving packages outside, still causes issues). Please also know though that ROOM TEMPERATURE medications also have storage guidelines & that a plastic bag will not protect potency in the over 100 days that it is freezing in my state and the many days that it is extremely hot. It is time that we improve our handling of these medications and give patients back the OPTION of keeping their pharmacist that they've known for years.

Many may like mail order pharmacy as an option, but it should not be the ONLY option for people to get lifesaving medications.

To the delivery services, like UPS FED EX & USPS, you have a stake in this too. Please handle medications as a mother would. I would NOT put my son's medications for a second in a hot or freezing truck or warehouse in only a plastic bag. If delivery services are going to profit from child and adult patients, do it ethically.  Do not allow medications to go outside of the proven safe temperature ranges. Use only refrigerated trucks for medications that require refrigeration and provide air conditioning and heat to ensure room temperature medications are kept at room temperature. This would help save some of the delivery drivers lives as well. When thinking about the many ways we could improve here, should delivery services be required to undergo special pharmaceutical training or licensing on the importance of handling our life-saving medications? 

To the prescription drug manufacturer who puts a label on the medication with a temperature storage guideline, thank you. Unfortunately, many mail order pharmacies don't even try to comply when it comes to room temperature medications as they ship medications in only plastic bags all year round. Many patients are under the false impression that temperatures don't matter to their medication, because the mail order pharmacy just shipped the medications to the patient in only a plastic bag, children's delicate room temperature medications included.

Despite the mail order pharmacies lack of protecting room temperature medications, all medications have limits. Some, like children's oral medications and others, may have much smaller limits. 

The regulations at which temperatures are tested haven't kept up with the temperatures that medications are experiencing during transport to the patient. If we are only allowed coverage if we get our medications by mail order and knowing that they do this, please do additional testing on each medication, redo the label, or support this cause. I need the manufacturer's help as well as they are truly the only ones who know the risk of each specific medication when exposed to extreme temperatures since the manufacturer is responsible for the testing of the medication temperatures. 

Thank you again for your support! If you are willing to share your experience or concerns with lawmakers in your state. Please contact me:

Email: stopmandatorymailorder@yahoo.com (don't forget to include your state).   

Twitter @BoesingLoretta

Facebook: Issues with Mail Order Pharmacy page @justamomwholovesherson. 

Thank you so much for sharing and supporting this common sense but critical issue!