August 2019 Georgia Hemophilia Advisory Board Meeting

The Hemophilia Advisory Board (HAB), an independent advisory board of health care providers who treat people with inherited bleeding disorders, met for its quarterly meeting on Aug. 23 at the Georgia Department of Public Health (DPH) office in downtown Atlanta. Hemophilia of Georgia’s (HoG) Jeff Cornett has been appointed by the DPH Commissioner to fill the slot formerly held by Nichelle Sims. Jeff was elected as the presiding officer.

After approval of the minutes, the Board considered the following agenda items:

• Annual Report Due to the Office of Health Strategy and Coordination – as directed by Georgia law, the HAB is to review and make recommendations regarding issues that affect the health and wellness of persons living with hemophilia and other bleeding disorders. This is an ongoing task and a formal report is due on Oct. 1. Since, to the knowledge of the HAB, the Office of Health Strategy and Coordination has yet to be created, the board agreed to submit its report to the governor and the commissioners of the departments of public and community health. This report will be public and available for public review and comment.
• Possible Effect of Medicaid Waivers on People with Inherited Bleeding Disorders – Georgia is considering seeking waivers from the federal government to the rules for operating the state’s Medicaid program. One proposed waiver would make adults with incomes up to 100 percent of the federal poverty limit eligible for Medicaid coverage. Since the federal government has indicated that it will not fund a waiver of this type at the state’s desired level (90 percent federal money), the future of this waiver is in doubt. The board will be monitoring this situation closely.
• Access to Skilled Nursing Facilities by People with Inherited Bleeding Disorders – Currently, Medicare provides a fixed payment for each day a patient is in a skilled nursing facility (SNF). The amount paid is not enough to cover the cost of medications to treat bleeding disorders. Because of this, people with hemophilia are usually turned away from these facilities. They either must remain in the hospital or go without care. HoG has been working with the National Hemophilia Foundation and the Hemophilia Alliance to seek changes to the Medicare regulations so that bleeding disorder medications can be billed separately from the daily SNF rate. This is already being done for chemotherapy drugs, radioisotopes, and certain prosthetics. HoG staff have been working with Sen. Johnny Isakson’s staff on this issue and are optimistic that changes can be made. The HAB agreed that this is an issue that is adversely affecting care in Georgia and should be a priority.
• New Business – the HAB is very concerned about the recent recall issued by Bayer. There were patients in Georgia who received this mislabeled, expired medication. The HAB is going to draft a letter to the commissioners of the departments of community and public health expressing their concern about the level of quality control and safety at Bayer that would allow this type of mistake.

The HAB will meet next at 10 a.m. on Friday, Nov. 15, at the Georgia Department of Public Health (Room 300 on the 15th floor, 2 Peachtree Street NW, Atlanta).