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8607 Roberts Drive, Suite 150 Sandy Springs, GA 30350-2237


NHF Washington Days Goes Virtual for 2021

By Jeff Cornett RN MSN, Vice President of Research and Public Policy

Published March 17, 2021


Representatives from Hemophilia of Georgia joined advocates from all over the country in online meetings with congressional staff on March 3rd. Edith Rosato, HoG CEO; Deniece Chevannes, Senior Director of Grants Management; and Jeff Cornett, VP of Research and Public Policy were joined by Megan Lee from the HoG Junior Board; Chip Hearn, long-time HoG volunteer and advocate; and Jennifer Pharaoh, HoG’s Washington lobbyist.

In addition to pushing for funding for the federal agencies that support bleeding disorder care, the advocates asked Congress to take action on Copay Accumulator Adjustor Programs.  The annual treatment costs 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 all at once in January. For 2021, the OOP limit is $8,550 for an individual and $17,100 for a family.  Many families need financial assistance to pay these OOP costs and receive it from non-profit organizations or pharmaceutical companies.  An increasing number of private health insurance plans are implementing copay accumulator adjuster 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 ER visits, 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. This can be done via regulation by the federal Centers for Medicare & Medicaid Services. The Washington Days advocates asked members of the U.S. House of Representatives to support patient access to drugs by co-signing a letter to President Biden urging him to prohibit accumulator adjuster programs.

If your family has been affected by a copay accumulator adjustor program, please let us know at Hemophilia of Georgia. Personal stories from people living in his or her district can move a member of Congress to take action.