Former Gov. Swift and daughter testify at State House on hurdles to access medication

When an apparent computer snafu kept Lauren Hunt from getting her juvenile arthritis medication delivered, she found herself in terrible pain.

“It turns you from a person to a patient very quickly,” said Hunt, now 22, in an interview Tuesday after a hearing at the State House on prescription drug benefits. She testified at the hearing with her mother — Jane Swift, who served as governor of Massachusetts in 2001 and 2002.

Swift and Hunt recounted years of struggles securing medication for Hunt's condition, blaming the middleman role played by so-called pharmacy benefit managers, which negotiate with health insurers, manufacturers and pharmacies.

Swift told the legislature’s Joint Committee on Health Care Financing that Massachusetts has "absolutely no systems in place" to protect patients like her daughter from pain and upheaval when pharmacy benefit managers make it difficult to access prescription drugs.

A mother's political sway was no help when it came to untangling the problem. But Swift and her daughter hope to move the needle now. They testified in favor of a bill that would hold pharmacy benefit managers more accountable.

Hunt said the medication she needs is available only from specialty pharmacies that contract with pharmacy benefit managers; she can't just go elsewhere and pay out-of-pocket in a pinch. That means if the medication suddenly becomes unavailable or fails to be delivered by mail, she can be forced to go weeks without taking her regular dosage, suffering debilitating and unnecessary pain.

Swift took aim at the lack of oversight of the pharmacy benefit managers. "If your flight is canceled, that has to be reported to the federal government," she said. By contrast, "If your meds that you need, lifesaving meds, aren't mailed to you, no one has to be told and the problems don't have to be reported. That is just not right."

Reform supporters are hoping to generate new momentum this lawmaking session to rein in pharmacy benefit managers, often referred to as PBMs, and their contribution to rising health care costs.

The Senate has sought to subject these entities to additional regulatory scrutiny in two straight legislative terms, but neither measure advanced in the House.

With reporting from WBUR's Steve Brown and Chris Lisinski of the State House News Service.