After I was diagnosed with psoriasis in 1996, I spent years agonizing over what medications and surgeries might offer relief for my chronic disease. I was fortunate to have found a treatment that works. Yet, even now, I continue to worry — only this time, my fear isn’t about finding a treatment solution but about losing the one that has changed my life.
Pharmacy benefit managers (PBMs) have implemented a scheme that raised my out-of-pocket costs and prohibited me from applying my copay assistance toward my cost requirements. Today, millions of Americans are at risk of falling victim to a similar predatory practice by PBMs and insurers — the essential health benefits (EHB) loophole. Washington must take immediate action to close this loophole, which puts patients who rely on specialty medications at serious risk at the expense of insurer and PBM profits.
At the time of my psoriasis diagnosis, raised plaques and scales covered 85 percent of my body. I suffered from hair loss and my joint pain was debilitating. I went on to try seven biologic medications; some did not work, and others offered only temporary relief. Finally, I found a treatment that worked for me. In the two years I have been on it, my hair has grown back and my psoriasis covers only a small part of my body. However, thanks to the predatory practice known as the EHB loophole, the relief from my psoriasis is in danger.
Federal law states that health insurance plans must cover a set of 10 categories of services known as the “essential health benefits,” with one of these categories being prescription drugs. To avoid this requirement, health insurers and PBMs are exploiting a loophole in federal law that allows them to redesignate some prescription drugs as “non-essential.” Drugs designated as “non-essential” are usually specialty drugs, where in most cases, patients may not have an alternative option available.
Once designated as “non-essential,” these drugs are exempt from cost-sharing requirements and patient affordability protections baked into federal law. The manipulation of this loophole allows insurers and PBMs to maximize their profit while patients are left to bear the burden of high out-of-pocket costs.
I am one of millions of Americans who rely on copay assistance to afford my medication. If my insurer uses this loophole, it will jeopardize my coverage, access to treatment and the ability to afford that treatment. When patients with chronic diseases have no other treatment options, they’re forced to pay the new, exorbitant costs or risk their health.
Going without my treatments is not an option. However, schemes like the EHB loophole jeopardize the relief from my psoriasis. Every year-and-a-half I require nerve ablations. Joint damage in my spine and both thumbs has led to multiple surgeries. My treatment is what keeps psoriasis from covering 80 percent of my body, what keeps me from hair loss and what keeps my psoriatic arthritis from causing further joint damage.
The administration must make it a priority to protect patients from PBM and insurer greed. In 2024, the Department of Health and Human Services and the Treasury Department issued the Notice of Benefit and Payment Parameters for 2025 that protects patients with individual or small group health plans from the EHB loophole. While this is a step in the right direction, it is not enough. The rule does not automatically protect patients with large-group or self-insured health plans. This means millions of Americans are at risk.
The departments of HHS, labor and treasury must issue a regulation that expands cost-sharing safeguards to all health plan enrollees, allowing out-of-pocket payments for prescription medications to be appropriately protected by federal law. The health of patients across the country is at stake — there’s no time to wait.
I urge the administration to close the EHB loophole now to protect all Americans in 2025. Patients can’t afford to wait another year.
