I wanted to give you an update on our son and inform you of why this issue is taking so long to resolve.
For those who don’t know, Wes had a liver transplant at the age of 2. Last year, after the mail-order pharmacy shipped his life-saving medication on a hot day without protection, Wesley’s labs elevated and have remained mostly higher than his normal and one slightly out of range for the last year. They continued to remain at the upper level of normal or somewhat out of range until the last couple of months when his labs went almost double the normal range. A biopsy was performed, and our child is in transplant rejection, and the rejection is worse than they initially thought. Although his labs were not off the charts, I believe that his labs staying higher than his average and slightly out of range for so long may have had a powerful and negative impact on his transplanted liver.
When a patient with a chronic condition has a lower potency drug or goes days without medications due to a delay, there is no guarantee that the patient’s condition will ever fully recover. We shouldn't have to question if improper shipping is the reason why our child's condition worsened.
Wesley is on high dose steroids to try to gain control of the rejection. The additional treatment is costing our employer-sponsored plan thousands of dollars. Mail-order pharmacy can cost us more than money.
Why are these practical issues so hard to resolve? Patients' lives depend on the choice and safe access.
Recently, the state of Oklahoma passed legislation to stop the steering to the PBM owned pharmacies (CVS Caremark, Optum RX, and Express Scripts). Currently, PBMs and their association Pharmaceutical Care Management Association (PCMA) stated that any legislation is against ERISA law, the law for employer-sponsored plans that has not been updated in over a decade. PCMA says that taking the PBMs ability to steer us to their owned pharmacy would increase costs. With the oligopoly of PBMs, they are contributing record sums in the millions of dollars to our elected officials, ensuring our voices will not be heard, and our lives will not be protected.
With their unchecked and monopolistic power, PBMs may be able to raise prices if patients are given a choice. That is until PBMs power is stripped from them. If not stopped, PBMs and their related mail-order and retail pharmacies will continue to cause the closures all of our trusted pharmacies until they've successfully removed their competition. There is evidence that this is already happening.
Currently, forced mail-order pharmacy is raising prices with their unethical practices, as given my example of my son. They use their monopolistic practices to charge us a lower copay to use their pharmacy while behind the curtain, they are sometimes price gouging over 8X as much as they reimburse themselves much more than our trusted pharmacies. I found this on my own when I looked at how much they reimbursed themselves vs. our trusted pharmacy for the 2 months that we were allowed to use our trusted pharmacy before being forced to the PBMs mail-order.
It doesn’t have to be this way.
Many will ask why don't we sue the PBM and their affiliated mail-order pharmacy? As more find out that the PBMs and their affiliated mail-order pharmacies have risked their lives, a lawsuit may come.
I want to be able to speak openly about these issues and share our experiences to warn others. Also, money wouldn't hurt the wealthiest corporations in our nation. They pay the fines and the lawsuits and continue on with their unethical behaviors. Patients' lives and the lives of our children are worth more than any of their money. We need laws to change and patient safety to be prioritized. I want to ensure that all patients will have safe access to their medications today, tomorrow, and forever.
Thank you for your support.
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Share your story: Loretta@uniteforsafemeds.com