The Pennsylvania Department of Public Welfare (DPW), under the leadership of Secretary Estelle Richman, has approved a recommendation of its Pharmacy and Therapeutics Committee that a proposed Preferred Drug List (PDL) for Medicaid include all clotting factor products used to treat hemophilia and other bleeding disorders. The original announcement of the committee’s recommendation came during a meeting on December 14, during which clotting factors, Alzheimer’s treatments, and several other drug classes were reviewed. Secretary Richman’s acceptance of the recommendation followed soon after. The decision comes after a major effort to dissuade DPW from excluding some clotting factors from the list by the National Hemophilia Foundation (NHF), its Pennsylvania chapters, industry, and others in the community.
The plan to implement a PDL as a cost-saving measure for Pennsylvania Medicaid was announced earlier this year. Essentially, the list would limit enrollees to a select group of drugs, and would either bar or make difficult the ability of consumers to access drugs not on the list. PDLs for Medicaid are not new. Most states have either implemented one or are considering doing so, although there are indications that the cost savings are not significant. However, while most states with PDLs have exempted several drug classes, including clotting factor, DPW had previously indicated Pennsylvania would be the first to place limitations on these essential drugs. This would have threatened the lives and health not only of Pennsylvanians on Medicaid, but also of people with bleeding disorders across the country as other state governments and private insurers might have been encouraged to follow Pennsylvania’s lead.
The National Hemophilia Foundation (NHF) and its two Pennsylvania chapters with grassroots support from many others, have worked diligently over a period of several months to make the case that this measure would be inappropriate and could harm patients. Key points in meetings with DPW staff, legislators and the Pennsylvania Governor’s office have included:
- There are no generic clotting factor products
- Each product has a unique manufacturing process and formulation
- Different products work differently for each patient
- The decision on which product to use should belong to the physician, in consultation with the patient or guardian
- Preventing a person with a bleeding disorder from accessing appropriate treatment can result in serious medical consequences, including joint damage or even death
Starting in October, NHF and its Pennsylvania chapters worked with public policy and media consultants to conduct a broad media campaign designed to influence decision-makers in Pennsylvania and the public in general. The campaign resulted in significant favorable coverage of the issue in newspapers and other media across the state.
NHF will continue to work with the entire community to ensure that all people with bleeding and clotting disorders have access to the full range of treatments and high quality care.