NHF Washington Days 2022
By Michelle Conde, Senior Director of Advocacy
Representatives from Hemophilia of Georgia joined advocates from all over the country in online meetings with congressional staff on March 2nd. Edith Rosato, HoG CEO; Julie Hayman, Director of Payer Solutions; Nikki Duncan, Director of Telehealth; and Michelle Conde, Senior Director of Advocacy were joined by Jennifer Pharaoh, HoG’s Washington lobbyist, Savannah White from the HoG Junior Board; and long-time HoG volunteers and advocates Julia Conde, Michael Gogan, Rhonda Lewis, Andrea Nabritt, and Chelsee Nabritt.
In addition to pressing for continued funding for the federal agencies that support bleeding disorder care, the advocates asked members of Congress and their staff to take action against Copay Accumulator Adjustment Programs by supporting HR 5801, the HELP CoPays Act, which would allow additional payments, discounts, and other financial assistance to apply to the cost-sharing requirements of health insurance plans. The annual treatment costs can exceed $350,000 per year for a person with severe hemophilia. Therefore, people with bleeding disorders hit their health insurance’s annual out-of-pocket (OOP) maximum each year, often in January. Many families need financial assistance to pay these OOP costs and receive it from nonprofit organizations or pharmaceutical companies.
An increasing number of private health insurance plans are implementing copay accumulator programs that don’t allow co-pay assistance to count towards a patient’s OOP maximum. When co-pay assistance is not allowed, many patients cannot afford their treatments and stop taking them or reduce the prescribed dosage. This often leads to complications and has unintended consequences (i.e., increased visits to the emergency room, joint bleeds/damage, and missed days from work/school) that harm patients and increase overall costs. The bleeding disorder community believes that plans should be required to count all co-pays (regardless of who pays) towards a person’s OOP maximum.
If your family has been affected by a copay accumulator program, please let us know at Hemophilia of Georgia. Members of Congress need to hear personal stories from people living in their district to help persuade them to take action.