USA: A new wave of middlemen offers 'alternative funding' for specialty drugs. Patients bear the risks
As someone living with cardiac sarcoidosis, 60-year-old Kevin Danahy can’t afford to have bad health insurance. To control the inflammation in his heart, he needs an infusion of Remicade every other month, which he gets at Beth Israel in Boston. The infusion costs thousands of dollars out of pocket, so Danahy typically opts for costly PPO plans for reliable coverage.
This past spring, when his wife got a job at nursing home operator Stellar Health Group, Danahy joined her health plan. Like always, he reached out to his doctor to start the process of getting insurance approval for his infusions. The approval, viewed by Fierce Healthcare, came from Anthem Blue Cross Blue Shield and acknowledged the medication was medically necessary.
“There was nothing to make me question whether or not this would be covered,” Danahy said. “It looked good to me, and it looked good to my doctors.”
Danahy went in for two infusions, in April and June. He then unexpectedly got a benefits explanation from Leading Edge Administrators, the third-party administrator of the plan, showing he was responsible for $17,000 in charges. He also got an $11,300 bill from Beth Israel for one of the infusions. His explanation of benefits documents inexplicably keep getting revised, with his responsibility now exceeding $20,000.
Though he has appealed his charges, Danahy remains stuck in limbo. He’s been told that he does not, in fact, have coverage. Worried about another big bill, Danahy skipped his August infusion. His arrhythmia has gotten worse. With each skipped dose, he risks the treatment becoming less effective.
“My doctors say I put myself at a real risk of this sarcoidosis reactivating in my heart,” Danahy said. His condition had landed him in the hospital before, his medical records show.
Source: Fierce Healthcare, 14 October 2025