The National Organization for Rare Disorders (NORD) today issued the following statement in response to American Patients First, the Trump Administration Blueprint to Lower Drug Prices and Reduce Out-of-Pocket Costs:
Patients with rare diseases are frequently disproportionately affected by high drug prices. Rare diseases tend to be chronic and medications can be needed for the life of the patient. And orphan drugs, because they are intended for smaller patient populations, often are higher priced than medications for more common diseases. As a consequence, patients with rare diseases increasingly have higher out-of-pocket expenses.
NORD supports the efforts by President Trump, Secretary Azar, and the new Administration to develop a program to lower drug prices and reduce out-of-pocket costs. Drug pricing, as Secretary Azar has said, is very complex. Better negotiations between the manufacturers and the purchasers, passing rebates along to patients, more transparency in pricing, and adopting measures that will help patients lower out of pocket costs are all meritorious opportunities to benefit all patients, including those with rare diseases.
The Blueprint is knowledgeable, forward-looking and ambitious. We welcome the opportunity to work with HHS and other departments within the government to address this important national challenge.