Medicare cuts endanger hemophilia sufferers

"Essentially, what it means is that some of the costs for services incurred by home care companies that used to be reimbursed through the cost of the product are not going to be reimbursed through the cost of the product anymore," contends Lynn Shapiro Snyder, of the Washington, D.C.-based law firm of Epstein, Becker and Green.

Adding to the frustration is the general ambiguity of the "administration fees," an issue that troubles Donna Ligda, a clinical nurse specialist and employee of Curative Pharmacy Services, the country's third-largest hemophilia specialty pharmacy provider of blood clotting factor. "From every indication, there is no way that the administrative fees they are proposing are going to come close to covering the level of services that has been received by individuals with hemophilia in the past," she insists.

Members of the hemophilia community particularly are concerned that the Centers of Medicare and Medicaid Services (CMS) may be relying too heavily on specific conclusions drawn by the GAO report entitled, "Payment for Blood Clotting Factor Exceeds Providers' Acquisition Cost." The Medicare Act specifically suggests that the HHS Secretary review the GAO's report to derive the amount of the administration fee. Yet, the GAO acknowledges in the report that their conclusions were drawn with information provided by Hemophilia Treatment Centers (HTCs), but did not estimate the costs incurred by homecare companies associated with the furnishing of clotting factor and preventive treatment services.

Homecare companies argue that, minus this key data, accurately estimating administration fees is impossible. The GAO report wrongly assumes that the administrative costs that apply to HTCs also are appropriate for homecare pharmacy companies. "It is inappropriate to establish this fee based only on the cost structures of hemophilia treatment centers," reads a statement from the National Hemophilia Foundation. "Most clotting factor for self-infusion is dispensed by hemophilia treatment centers and home care providers."

"The government is trying to determine an administrative fee that would be added to the cost of the product," explains Snyder. "They need to make sure that the level of service and quality that has historically been available under the current payment methodology from various specialty pharmacies can continue so that there is no disruption of services."

Congress and HTC

Congress created the national HTC network in 1974 to ensure access to comprehensive and specialized care for persons with bleeding disorders. HTCs are Federally funded facilities that offer broad professional treatment services.

A home care company, also known as a specialty pharmacy, fills a specialized niche in the hemophilia community by offering home delivery of factor, as well as services that complement those of HTCs. They include access to clinicians that are specially trained to provide education about hemophilia and factor; monitoring of patient compliance with drug manufacturers' guidelines; specialized delivery services such as refrigerated overnight mail, courier, or hand delivery; and patient support and community advocacy.