themighty logo

The Never-Ending Battle for My Daughter's Transplant Medications

It has been over five years since my daughter, Lexi, had her kidney transplant. Now for anyone who may be unaware of the process, transplant patients need to take immune suppressant medications for life. If they miss doses, it can lead to rejection. And without these medications, the recipient’s immune system will attack the transplanted organ. You would think the people responsible for shipping these medications from the pharmacy would understand this simple fact.

We have to use the specialty pharmacy, so we can’t just stop into the store and pick up her pills. We have to wait for them to be shipped to our home and we have to be here to sign for them. But if we know anything from the last five years, it is that if there is a change of medication or dosage, we are going to need to set aside a few whole workdays to make calls. This happens a couple times every year.

My husband started calling CVS Caremark on Sept. 14 because Lexi’s dosage changed from 4 milligrams to 5 milligrams. He assumed we would have problems this month, but it has never dragged on for this long before. We managed to get an emergency supply of three days, then we received a five day supply. Today, we ran out again. My child needed to take her pills at 3:30 p.m., and we spent the day on the phone, finally getting them at 5:30 p.m.

Lexi has been due for blood work for weeks to make sure her medication levels are in the correct range, but she’s been taking less than her full dosage one day, an extra pill the next day and had to take them later in the evening several times. So her medication levels — which need to remain stable — have been thrown off while we anxiously stood on the front porch waiting for a delivery person.

Larry Merlo (CEO, CVS Health), why don’t you do something to earn that $22 million per year (as reported by Becker’s Hospital Review) and fix this? Transplant families have enough to worry about…we have enough to do. We are still paying off her first month’s transplant medications. We need to spend our days working and caring for our children, not calling CVS Caremark escalations, the transplant coordinator and the insurance company over and over. It’s like the, “ask your mom, ask your dad,” game and we are done playing with you.

Our daughter needs her medications every month, on time. Someone needs to do better. This process needs to change.

Please share this with anyone else who may be facing the same problems with getting vital prescriptions, or anyone who might be able to help make this change. I’m not just complaining, I want the problem fixed. I’m done letting them get away with this.

Photo submitted by contributor.