Pharmacy benefit manager reform is the bipartisan solution patients desperately need

By Rich Pezzillo

In the wake of the longest government shutdown in U.S. history, the skyrocketing cost of health care has once again become a defining issue in Washington. Yet even with the urgency Americans feel, meaningful progress on lowering health care costs has remained out of reach.

For families in New Hampshire and across New England, especially those living with inherited bleeding disorders like hemophilia, the rising cost of care is not an abstract policy debate. It is a daily, deeply personal burden that threatens their health, stability and quality of life.

Rich Pezzillo

That is why the reintroduction of the bipartisan Pharmacy Benefit Manager (PBM) Price Transparency and Accountability Act could not come at a more important moment. And it is why I want to thank Sen. Maggie Hassan for cosponsoring this critical legislation and standing with patients who depend on lifesaving medications. Last year, the Crapo–Wyden PBM bill came close to the finish line. Now that Congress has another chance, lawmakers must act quickly and decisively to deliver long-overdue reforms.

PBMs were initially designed to negotiate lower drug costs on behalf of patients. But in reality, these companies, now some of the most powerful entities in the health care system, often increase, rather than reduce, what patients pay.

Industry consolidation has supercharged this problem. Today, just three PBMs control nearly 80% of all prescription drug claims in the U.S., each vertically integrated with a major insurer. Their decisions influence everything from which drugs are covered to which pharmacy a patient is allowed to use.

This consolidation has serious consequences for individuals with bleeding disorders. Hemophilia treatments, lifesaving infused medications that require precise dosing and monitoring, are already among the most expensive therapies in the health care system.

PBMs routinely steer patients away from trusted specialty pharmacies and toward their own affiliated mail-order operations, disrupting continuity of care and limiting access to trained pharmacy teams. Some generic hemophilia drugs face markups of more than 1,000%. Meanwhile, PBMs are estimated to pocket roughly $100 billion annually through spread pricing, retained rebates and hidden fees. At the same time, more than 1,000 independent pharmacies closed last year, many pushed out by PBM practices.

For patients with hemophilia and other rare bleeding disorders, these problems are not merely inconvenient; they are dangerous. Delays, forced substitutions or restrictions on factor products can result in painful bleeds, permanent joint damage, emergency room visits or long-term disability. Families cannot afford uncertainty about where or how they will access the medications that allow them to live full, safe and healthy lives.

The good news is that Congress has a bipartisan path forward. The reform bill championed by Sens. Crapo, Wyden and Hassan would break the link between PBM compensation and drug prices — one of the core drivers of inflated costs. Other provisions would ban harmful practices such as spread pricing and require transparency so insurers, employers and families can finally understand where their health care dollars are going.

These reforms would offer meaningful relief to the bleeding disorders community while saving taxpayer dollars. Federal estimates indicate that PBM reform could save nearly $5 billion by ensuring drug prices reflect what pharmacies actually pay, eliminating hidden fees and curbing backroom deals that inflate Medicare spending.

Passing PBM reform would send a clear message: There is no place for patient exploitation or unchecked vertical integration in our health care system. For the hemophilia community, consistent and affordable access to specialized medication is not optional — it is essential for survival.

But Congress has already missed several opportunities to act. Last year, bipartisan PBM reforms were included in a year-end package that ultimately collapsed due to unrelated political factors. Executive agencies have taken steps to rein in PBMs, but true, lasting change requires congressional action.

This is a commonsense, bipartisan solution that would provide immediate relief at the pharmacy counter. Patients across New England, especially those with hemophilia and other bleeding disorders, cannot bear another year of rising costs and restricted access. With Sen. Hassan’s leadership, Congress has a chance to finally fix this broken system.

PBM reform is not only necessary, but it’s an urgent request from Granite State and New England patients. On behalf of the patient community in New England, I’m asking Congress and the remaining New England Senate Delegation to get off the sidelines and finish what they started last year on a party-friendly, bipartisan, lifesaving issue. The patient community is watching. We are expecting its passage this year, period!

This time of year encourages us to set aside old divisions and focus on our shared humanity. Advancing PBM reform is a simple but powerful way to support the most vulnerable among us. Offering patients a bit more hope this Christmas is a generosity they have unquestionably earned.

Rich Pezzillo is the executive director of the New England Hemophilia Association, advocating for patients and families affected by inherited bleeding disorders across the region.