Hi Everyone! Good and bad news.
First, April 22, 2012. It was the day of Wesley’s liver transplant. His life was fading quickly after getting the flu. There was a moment whereas I almost felt his body was leaving us.
I looked to the transplant surgeon, and frantically asked, “Are we going to make it?” Her response will live on inside of me forever, “We will never make it, if we don’t try.” He made it, but he must take medications every 12 hours to keep him alive. Medication potency is his life and I don’t want to risk any loss of potency because I don’t want to risk his life.
The laws regarding medicatons temperatures during transport and delivery are long overdue for updating. Today, I am tearful yet hopeful and remembering the words, “We will never make it, if we don’t try.”
Forced mail order pharmacy as the ONLY option of coverage is not about what is best for the patient. It’s very risky for many reasons. Due to many risks, patients should have a choice with equal access and coverage to keep the face to face relationship with their pharmacist.
The Bad News First
The State Board of Pharmacy changed their letter/response to our complaint. They have dismissed the complaint citing, “not enough evidence” & because we “received an override.”
#1. The override. I fought for almost two months on my own, before getting my son’s doctor involved. My son’s amazing doctor sent an appeal for us to get my son’s medications at the pharmacy at which it is filled.
The pharmacy benefits manager DENIED the doctor’s appeal.
I offered to drive over 4 hours to the nearest mail order pharmacy to pick up his medications at the mail order pharmacy to keep the son’s life saving medications out of the hot truck, that request was also denied.
They offered to ship it to their local retail pharmacy. When I asked if it would be shipped again in the same hot truck without ice, THEY SAID YES. I SAID NO!
Only after over 30-40 calls and excellent reporting and outreach by our heroes, Mike Colombo and Fox 2 News, we were finally able to get coverage at my son’s pharmacy where the staff who has worked with my son for years fill and keep my son’s medications out of the environment to reduce any risk in loss of potency.
Sadly, how many other mothers and patients don’t have access to media? THEIR SON OR DAUGHTER, EVERY PATIENT DESERVES THE SAME ACCESS, COVERAGE, AND TREATMENT AS MY OWN. While reading this, please think of the thousands of patients whose voices are not being heard.
I could have dropped this after our 12 month override, BUT I didn’t. BECAUSE Wesley will have to be on these medications for the rest of his life. Although he is on capsules now, the State Board of Pharmacy will miss A VERY BIG point I'm trying to make if they miss the simple fact that I want to ensure that no child’s LIQUID liver transplant medications are EVER shipped without anything to protect them on a 100 degree day.
#2. Not enough evidence. Outside, it was about 90 degrees the day they delivered his medications. I was promised an ice pack. It arrived with nothing to protect it. The manufacturer says to discard the medication if the temperatures exceed 86 degrees. How hot was the inside of the back of the UPS truck known to reach over 170 degrees as the door must be kept closed? Despite what the State Board of Each room temperature medication is unique and should have specific guidelines that encompass the true limits on temperature, humidity, and the time that a medication should be rendered no longer safe to use once exposed to high temperatures.
Not adhering to the manufacturer’s proven safe guidelines is certain to put our State and all taxpayers at liability. Governors across our nation, including our Governor Mike Parson, needs to be aware of this liability as he is responsible for the appointments of the State Board of Pharmacy.
If the manufacturer of these medications allows the mail-order pharmacy to ship outside of proven safe guidelines for even undefined short durations without additional testing to cover each unique trip, hot mailbox, packages left in the hot sun/below freezing temperatures on a doorstep, they too are making themselves a liability.
The first time when my son was on liquid medications, I had no clue that the UPS trucks were not air-conditioned. This time, I had to find out how hot the trucks were getting in the back.
I connected with a woman who had another petition on change.org. Her husband went into renal failure. Why? It is due to the storage area in the back of the delivery trucks reaching temperatures as hot as 170 degrees in the summer. The trucks turn into low-temperature mini ovens as they are hot and enclosed areas just like our hot car in the sun. Search deliver driver and heat, you will find some have lost their lives. I cried for days after she told me this. Why didn’t they warn me/all patients that these trucks are not temperature controlled?
My child is now on capsules; however, I’m DEEPLY concerned about all room temperature children’s liquid medications. I’m also concerned about the “no limit” temperature rule to ALL of our room temperature medications. Many shouldn’t freeze, so an ice pack may not be suitable. How many medications are truly safe at temperatures of up to 170 degrees? Mailboxes can soar to 150 degrees in the sun.
I know they try with refrigerated medications with their big coolers and ice packs, but few mail order pharmacies are even trying with our room temperature medications that are shipped in only a bubble mailer without a sensor.
WHY NO EVIDENCE? NO ONE IS MONITORING HOW HOT THE BACK OF THE TRUCK WAS OR HOW HOT THE ACTUAL MEDIATION INSIDE THE PACKAGE REACHED, but common sense says limits are important.
THE POSSIBLE GOOD NEWS – The State Board of Pharmacy has stated that they will be pulling in a variety of experts to update the current law to ensure the delivery of safe medications.
**** IF THEY DO NOT DISCUSS ROOM TEMPERATURE MEDICATIONS, like children’s liquid oral medications they’ve missed a major part of my complaint.****
I was told that I will be allowed to speak at the meeting.
The medication that the mail order pharmacy shipped to my son on the 90 degree day, on the bottle had a statement “excursions allowed 59-86 degrees.” In writing, I have a response from USP who writes global guidelines for medications and recommends this guideline also be adhered to during shipping from the mail-order pharmacy. Apparently, the State Board of Pharmacy disagrees.
Some medications may have additional testing for temperatures, but whether or not it is truly safe to store in these temperatures is questionable as it can make medications expire earlier. Children's liquid room temperature medications may only be safe for a few days after reaching extreme temperatures.
WE STILL MUST HAVE LIMITS and a way to alarm us if medications have reached temperatures that are no longer safe to take.
We will win this. One day, all plans will allow us to have the option of having coverage to keep our face to face relationship with our pharmacist we have had for years. Also when medications are delivered to us, we will know if the medications have truly been compromised.
Thank you for your support! It's because of every one of you who supported this petition that this issue will get fixed!
Thank you, Loretta Boesing
Please share your concerns, issues, or complaint:
Email: stopmandatorymailorder@yahoo.com
Twitter @BoesingLoretta
Facebook: Issues With Mail Order Pharmacy Page @justamomwholovesherson