It became impossible to ensure the selection of the best 2025 health plan for my son due to the shadowy health insurance middlemen whose names are no where to be found on health plan documents or the health insurance marketplace website. These middlemen will play a major role in determining which pharmacy my child can use. Often, they choose only the one owned by the insurance or themselves. They will determine which medications will be covered and if my local pharmacy will be able to stay open as they also oversee competitor's reimbursements. Some are known for purposefully reimbursing them below their cost.
Last year, we had to opt out of our employer-sponsored health plan after they insisted we use their mail-order pharmacy for my son’s life-saving medications. As expected, the insurance company’s pharmacy benefit manager (PBM) caused ongoing issues, including uncertainty about whether my son’s medications would be shipped with the proper protection.
With no other choice, we were forced to seek coverage through the health insurance marketplace and pay for a plan outside of our employer-sponsored options. This year, we’ve encountered more issues. Initially, my son’s transplant medications weren’t even listed on the formulary. Now they appear with “LD” next to them, which typically means “limited distribution” and could require using a mail-order pharmacy. No one can confirm.
Some pharmacy benefit managers or PBMs are more likely to force to their own insurance owned mail order than others for my son’s medications. Three pharmacy benefit managers that commonly do are Optum RX, CVS Caremark, and Express Scripts. If this was transparent on the site or plan documents, I would be better equipped to make the best decision to avoid them and avoid any additional risks to my son's life. After all, the supporters have taught me about many issues than I ever realized with mail order pharmacies.
No one from any of the entities involved has been able to determine who the PBM is or whether we will be forced into using a mail-order pharmacy again. I’m terrified of the possibility that my son’s medications might be exposed to improper storage conditions or delayed, risking his life. After hearing so many horror stories from other patients that I've connected with, I understand the importance of a pharmacy team you can trust. One mistake can be deadly. Through a petition, I've connected with many caregivers and patients who have been harmed, some of whom did not survive long after the error.
Despite my best efforts, the PBM is not listed on any plan documents or on the marketplace website. I called the marketplace and escalated the issue to four different tiers. Each person I spoke to had no idea what a pharmacy benefit manager is and couldn’t tell me who our PBM would be for 2025 or if we'd be forced into a mail-order pharmacy. I had to educate every representative about PBMs. They were all grateful for the information and thanked me for my advocacy.
After posting about this on X (formerly Twitter), I was contacted by a representative from the insurance company who also seemed unfamiliar with PBMs and couldn’t help identify who ours would be for 2025. She said that it would be a few days before she would be able to respond as she would need to outreach to her supervisor.
This experience reminds me of why PBMs are often referred to as “middlemen” hiding in the shadows. In my opinion, PBMs play one great role which is allowing insurance companies to evade the profit cap placed upon them after merging with them as they steer to their own mail order and distort drug prices. CVS Caremark is Aetna's PBM. Express Scripts is Cigna's PBM. Optum is United Healthcare's PBM.
Most of us don't realize they exist until we're standing at the pharmacy counter, losing access to our trusted local pharmacy as the PBM pushes patients often against their will to the insurance-owned mail-order service. Or, when a medication our child has taken for years is suddenly not covered. When we call the insurance company, we’re told those decisions are made by the PBM.
The forcing to mail order pharmacy is a perfect example of monopolization in healthcare and the health insurance industry.
As more and more pharmacies close across the country, it’s essential that we’re able to make the best choices for ourselves, our families, and our communities. Transparency regarding which PBMs are being used with health plans is crucial. We need to know if we’ll lose access to our local pharmacies and ensure that we can select the best health plan to protect our children’s lives and our own.
I’ll research the best contacts for this issue and will provide an update soon. In the meantime, please continue contacting your legislators about the many issues with forced mail order pharmacy.
Thank you for your support,
Loretta Boesing, Patient Advocate
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loretta@uniteforsafemeds.org