Ann Rogers

Capping the Cost of Hemophilia

Here is a coup d’etat for the hemophilia families of Delaware. On July 23, Governor Jack Markell signed a bill into law that caps the cost for drugs to treat chronic conditions like hemophilia. Specifically, the law limits co-payments for prescription drugs.

According to Markell’s office, under the law the co-pay for these specialty drugs will be limited to $150 per month for up to a 30-day supply. Patients will also be able to request an exception to obtain a specialty drug that would not otherwise be available on their health plan.

A news wire cites Executive Director of the Delaware Valley chapter of the National Hemophilia Foundation Ann Rogers:  “The average cost of hemophilia medicine per month is $40,000. So, when insurers proposed high cost sharing at 25 to 33 percent of the actual cost of the drug each month, we were panicked,” said Rogers. “That would be 10 thousand dollars out of pocket each month.”

The law goes into effect January 1 in Delaware and is the triumph of three years of negotiation between insurers, advocacy groups and others.

Rogers adds her group and others are already using the bill as a model for similar legislation in Pennsylvania.

“This model of first a study,” says Rogers, “then a recommendation and then legislation introduced to regulate this [issue] was the process used in Delaware and we found it to be a fair, transparent process that fleshed out the issue and resulted in a law that would protect families.”

Excerpted from

HemaBlog Archives