Rich Pezzillo, Executive Director of the New England Hemophilia Association.
Published: May 11, 2023. Originally published in the Warwick Beacon.

Double dipping has never been okay, but when its impacting Rhode Islanders health it needs to stop.

I’m not talking about chips and salsa, but rather the double dipping that Pharmacy Benefit Managers (PBMs) and their insurance company clients are forcing on patients.

Due to the rising out of pocket costs that insurers have been piling on patient’s shoulders in recent years, several third-party co-pay assistance programs have launched from private companies or non-profit organizations. These programs help patients afford their treatments by assisting patient’s with high-costs like their deductibles.

But now, to make additional profit for themselves, PBMs and insurers are still accepting the assistance dollars from the third parties but giving no credit towards the patient’s cost—so the insurer is being paid twice—hence the double dipping. And in turn, the patients are paying more to meet their deductible.

This is a reality that has hit Rhode Island residents hard. We’ve heard from more and more patients that this has happened to — in some cases increasing a patient’s out of pocket costs thousands of dollars each month.

We are helping patients fight back with assistance from some of our state lawmakers.

S0799 and H6159 mirror legislation passed in more than 17 states—including neighboring Connecticut, Maine, and New York. If passed in the Ocean State, the legislation will require that any third-party assistance count towards a patient’s deductible or maximum out of pocket costs. It’s as simple as that and it’s the right thing to do for patients.

Especially for patients like me—and those I represent who live with hemophilia and don’t have an alternative for a less costly medication. Hemophilia is a rare genetic blood clotting disorder that is treated often through frequent intravenous infusions on a regular basis. This treatment keeps even minor cuts and scrapes from turning into a major bleed, as well as protects the patient in case of a more serious injury. And as each patient is an individual, the right treatment needs to be individualized. There is no generic equivalent for any hemophilia treatment and there are no other treatment options.

Despite that, and despite having insurance, we’ve heard from members of our community that co-pay accumulators have been applied to their deductibles. Patients are currently delaying other needed medical interventions because they cannot afford their treatment without the assistance being applied to their out-of-pocket costs. This could literally be life or death for a patient.

That is why it is vital for lawmakers to act on this legislation. Copay accumulators are impacting patients living with diseases from cancer to psoriasis. That’s why there are more than 40 patient and provider organizations supporting S0799 and H6159.

I urge the Rhode Island legislature to do the same.