We have spent our lives fighting for people living with HIV because we are among them. We have sat in waiting rooms doing the math on whether to pay for prescriptions or the train fare home, and we have watched community clinics struggle to stretch every dollar. Programs like the state AIDS Drug Assistance Programs, or ADAPs, and the 340B Drug Pricing Program were designed to be lifelines to low-income patients who otherwise couldn’t afford their health care. Too often, patients are weakened not by accident but by the incentives of a system that puts profit over patients.
At the core of this crisis are pharmacy benefit managers — PBMs for short — the invisible middlemen who decide what prescription drugs we can access, how much they cost, and where we can get them. Originally intended to lower prescription costs, PBMs have evolved into powerful gatekeepers, profiting from the most vulnerable among us. Their actions disproportionately affect Black, Brown, LGBTQ+ and low-income communities, who are more likely to feel the brunt of access barriers and out-of-pocket costs.
Even more insidious is how PBMs now manipulate drug formularies to block access to newer, potentially life-saving medications. Since 2014, PBMs have excluded more than 1,500 percent more drugs from commercial formularies, putting access to medication firmly in their control. We deserve a system that sees us and prioritizes health over margins.
These harms are magnified by the vertical integration of PBMs with insurers and pharmacies. CVS Caremark is tied to Aetna; Express Scripts to Cigna. In this setup, the same corporations denying access to medications also collect insurance premiums and run pharmacies, turning health care into a profit cycle, not protection (Pew Charitable Trusts, 2019).
If Congress cannot act to clean up the mess being made by PBMs, then state insurance commissioners need to exercise the authority granted to them by state legislatures. These commissioners, if they don’t already have it, need expanded powers to examine the percentage of rebate dollars health carriers use to reduce cost-sharing requirements and evaluate rebate practices for health care plans delivered, issued, renewed, amended or continued.
We do not just need to survive. We deserve a system that sees us, values us and prioritizes our health over corporate gain. This means demanding transparency from PBMs, banning exploitative utilization management practices and protecting programs like 340B from predatory fees. Without these measures, PBMs will continue to drain our lifelines, and communities already hit hardest will bear the brunt of the cost.