Wesley's Transplant Story & The Fight Against Forced Mail-order Pharmacy
We don't take life for granted. We are thankful to our hero, a 3-year-old little girl. Wesley received a lifesaving liver transplant at the age of 2 after getting the flu. He received a transplant within one week of his first flu symptom. I recall hearing for the first time that he would need a liver transplant. I was walking up to the pediatric intensive care unit where he had just been transferred and observed a doctor/nurse standing outside of my son's room in a white coat holding a clipboard. It was as though she was anxiously waiting to tell us something urgent.
She asked if we were the parents. After our brief introduction, she was telling us that our son would need a liver transplant as 80% of his liver had failed. She explained that we would need to make a decisions quickly and that if he received a liver transplant that he would be on immunosuppression medications for the rest of his life.
The thought of medications for the rest of his life was nothing compared to the depth of the fight for just his survival or the possibility of losing him. Of course, we would be alright with giving him medications for the rest of his life if that meant that we could feel his hug, watch him play, and grow up just as we had planned since the day of his birth.
Within 24 hours of being listed for a liver transplant, Wesley had a liver. I remember at one point thinking that we would lose Wesley before the organ arrived. His health declined rapidly. I asked the transplant surgeon, Are we going to make it?
Her reply became my life's motto, "We will never make it if we don't try."
Not long after Wesley’s transplant, we were discharged home. I decided to try mail-order pharmacy as I thought it would be convenient. The package arrived in the middle of a record-breaking heatwave. On the day the package was scheduled to arrive, the package was nowhere to be found. Normally, the package is left by the front door. I checked another door, and I still didn’t see the package.
I called the mail-order pharmacy who stated that the package showed that it had been delivered. I contacted the delivery service who said the same but told me to give it another hour. I did.
I called the delivery service back again. This time, they said that it had been delivered a day earlier than scheduled. I walked around the outside of the perimeter of the house. I found the package in an odd location between two window ledges in only a thin poly-bag to the side of the house several feet away from the doors.
At that time, I didn’t even think of the possibility that the trucks that my child’s meds were stored in could reach 150 degrees as reported by NBC.
When a mom first finds their child’s medications in such conditions on a 102-degree day, their gut instinct screams at them. Sadly, we often think surely they wouldn’t do it if it wasn’t safe.
We are wrong.
After giving Wesley the transplant medications that arrived unprotected in the mail, two weeks later, we received a call. It was the transplant nurse. Wesley was in rejection. The life that we had just fought so hard for was at risk again.
They wanted to insert a PICC line to administer harsher chemo medications. Our options were to use the harsher chemo medications, or do nothing and we could lose his transplanted liver and another may not be available. Both were a risk to his life.
It was 2012. Wesley was 2 at that time. After two long hours of holding Wesley down as I tried to help the nurses who were trying to insert the PICC line, I told them to stop and give him some more time. I begged for just one more day to see if his labs improved. By a miracle, the following day his labs started trending down, but I never forgot the screams of my child, and I questioned the medications.
I promised myself to never again use mail-order pharmacy unless I can prove that it was safe.
In 2018, we were given no choice. We began receiving letters from CVS Caremark threatening us to use their mail-order pharmacy or pay 100% of the costs. At that time, we were using the Children’s hospital pharmacy. They worked closely with my son’s physicians. They knew all of his complex needs. I didn’t have to worry about my child’s medications being stored improperly, lost, stolen, or delayed. Most importantly, my son had consistent pharmacy staff that I trusted and could ask questions to, face to face or by a simple phone call.
At first, I ignored the letters; surely, this can’t be legal for them to force us to mail-order.
The day that I would hear that the insurance would no longer cover his medications at the hospital pharmacy, I stood at the pharmacy counter in tears. I asked, “Why not?” The rejection from the insurance company said that the children’s hospital pharmacy that fills critical life-saving specialty drugs for patients like my son was an “inappropriate” location for his medications.
I would argue that it was the most appropriate place.
I called CVS Caremark begging them to not force me to use the mail-order specialty. An override didn’t come before closure, so the hospital staff worked out a deal with me so that I could receive his medications one more time.
In the meantime, I voiced my concerns several times about mail-order pharmacy to CVS Caremark and to the specialty pharmacy. Nothing worked.
I spent one hour on a phone call with a CVS pharmacists the day that they filled his medications at CVS Specialty Pharmacy. They promised his medications would be protected from the heat as temperatures were already in the 90s.
Despite the promises by CVS Specialty Pharmacy, they arrived on a hot day without protection. I was angry. I trusted them with my son’s life. Again, two weeks later after giving my son the mail-order medications, his labs elevated again.
I began calling the pharmacy. I needed answers. Why didn’t they protect his medications? One pharmacist who goes by Farrah B. said that with ice packs moisture could build up inside the bottle and cause degradation. That was a red flag. If this was true, why didn’t the first pharmacists warn me of the issue with ice packing his medications instead of promising me to protect them?
The pharmacists also gave me the option to pick up my child’s medications at the local CVS. The specialty pharmacy would ship them from the specialty pharmacy to the local pharmacy. I asked, “How will they pack the medication?” Her reply, “The same way.” Unacceptable.
At this point, I knew that something wasn’t right. I reached out to my son’s doctors and told them about the poor packaging. CVS Caremark denied the doctor’s appeal to use a local pharmacy. One nurse informed me that they have issues all the time with the mail-order pharmacies. It takes several calls and faxes for the mail-order pharmacies to sometimes even acknowledge a script. They had to hire additional staff to help. It just doesn’t make sense. These same medications, at one time, that they could hand the prescription to the patients and they could go downstairs to the pharmacy and have them in their hands in 15 minutes is now taking days to arrive.
Then, I asked how hot do the trucks get? I found an article from 1998 referencing a postal truck study showing that the temperatures of the trucks can reach up to 170 degrees. The article discussed the unsafe storage of medications, but the mail-order pharmacists blew off the reporter’s concerns.
Then, I found another petitioner. She had a petition to air-condition the back of UPS trucks. She had photos of the storage areas of the UPS trucks reaching 150 degrees. I recorded my own UPS driver saying that the back of the trucks get so hot that he cannot breathe. He was very upset that my son’s medications were delivered without protection. He didn’t even know that the package he delivered contained life-saving medications.
I continued to press for answers. I knew that I was being lied to. I made several additional calls to CVS Specialty Pharmacy. Here were some of their excuses to not protect my child’s medications and what I uncovered. I have much of the following on recording.
CVS claimed, the manufacturers don’t store medications correctly when they are sent to the Specialty Pharmacy. I found that this wasn’t true. Unlike the CVS Specialty Pharmacy, the manufacturers are regulated by the FDA and are required to keep medications within safe temperature ranges. If this was true, two wrongs don’t make a right. This can be a concern when medications are sent from a wholesaler who is not solely regulated by the FDA. I found out from pharmacists that medications are often shipped from the wholesalers close by, over-nighted or shipped in early morning in large totes. The last mile when medications are mostly stored in only bags and are left in hot mail-boxes, left on doorsteps, or at the end of long driveways on the ground is the greatest failure to the protection of medications. I also reached out to both of the manufacturers of my son’s meds who told me to discard his medications after being stored in unsafe temperatures.
CVS Specialty claimed that USP Pharmacopoeia allows for my son’s medications to be stored up to 104 degrees. This wasn’t true. I reached out to USP and in writing and per USP, all medications should be stored within the temperature guidelines written on the label. The 104 degrees is only for medications that do not have temperature guidelines on the label. The labels storage guidelines applies to shipping. Most medications in the US have temperature storage ranges written on the label.
CVS Specialty claimed that they couldn’t control UPS. Upon learning about the skyrocketing temperatures in the back of these non-temperature controlled trucks, I asked what about the back of the temperatures reaching temperatures well over 104 degrees? Their reply, “I can’t control UPS.”
CVS Specialty claimed that they have no proof that my son’s medications could have been harmed at temperatures of over 100 degrees. “Is there anything proving that it is safe?” The pharmacist reply, “I cannot speak.”
I contacted the FDA who stated that they receive calls like this in the middle of every summer and winter because someone’s insulin is sitting in their mail-box, but the FDA doesn’t regulate mail-order pharmacy. I would later receive an image from a patient whose emergency diabetes medication was sitting in a hot mail-box in California without protection.
I filed a complaint with the Department of Insurance. Due to the insurance being through an employer, they forwarded the complaint to the U.S. Department of Labor. I was told that they hear a lot of it and although it is unethical and unfair; it is not illegal.
I was told to reach out to the State Board of Pharmacy. I filed a complaint with the State Board of Pharmacy whose own regulations stated that medications should be stored by either the manufacturer’s guidelines or by USP Pharmacopoeia. Neither was happening, but the Board failed to pursue any type of action. I would find out later that many on the Board come from corporate pharmacies that have affiliations with insurance companies’ mail-order pharmacies or their pharmacy benefit managers.
I connected with pharmacists across our nation who stated that they’ve been trying to voice their concerns about this issue but the State Boards are failing to acknowledge their concerns. Many of these pharmacists deliver in temperature-controlled vehicles for free.
Other mail-order pharmacies claimed that they have a great system that uses algorithm to ensure that enough ice packs were used. I discovered that this only applies to a small percentage of medications and many are going by the outside temperatures that fail to monitor the exact temperatures of trucks, mailboxes, or packages left in direct sunlight on porches. Most medications are not shipped with a temperature tracking device that would tell them the exact temperatures a medication was exposed to or a sensor that warns patients that medications could be unsafe to use.
At this point, I realized just how many lives were at risk. Many without a warning. I had to fight to protect Wesley, warn and protect other patients, and the life that lives on inside of him. I had to fight for all patients now as many patients taught me of the other issues with mail-order pharmacies such as delays, lack of access to a relationship with trusted pharmacists, lost/stolen medications, price-gouging, and I could go on to list over 100 other issues. Many patients will only share their stories if they can remain anonymous to the public as they are afraid of retaliation from their employer, the insurance company, or the one pharmacy that they are allowed to use.
It seems impossible to win this war as we’re fighting against the wealthiest corporations in our nation, but we must believe that we can win. I now fight alongside our trusted local pharmacists for safe pharmaceutical care, safe access, improved delivery, to include our local pharmacies in our coverage as they often offer free delivery in temperature-controlled vehicles , and to improve the working conditions of chain pharmacies.
I also discovered that many pharmacies are getting feed out of business or reimbursed below their costs of medications by the same insurance companies and pharmacy benefit managers that have merged with the mail-order pharmacies creating pharmacy deserts. What good would it do if we won the ability to choose our pharmacy if we continue to see our local pharmacies close? In America, we can do better as the insurance companies that force to their own mail-order pharmacies are seeing their profits soar and are paying their CEOs over 36 million a year. Our local pharmacies are vital to public health.
Lives depend on pharmacy choice and safe access to medications.
We will never make it if we don’t try. As long as we are trying, there is still hope.
