As an advocate for the CF community, the Foundation accepted the opportunity to meet with the administration and to reinforce that people with CF need access to high-quality, specialized care -- a core component of the Foundation's mission.

“We are concerned about the effect of cost on patients,” said Mary Dwight, senior vice president of policy and advocacy. “We don't have the solution but we are working to ensure that the needs of people with cystic fibrosis are represented in the ongoing discussions to develop an approach that will allow continued access to innovative, life-saving treatments.”

At the meeting, the Foundation shared how we view drug pricing through the lens of our policy principles:

• Affordability: Treatments are priced at a point that does not prohibit access for patients;
• Adequacy: Pricing and coverage decisions should be rooted in clinical evidence to support patients' access to high-quality therapies and care that reflect the latest research, clinical guidelines, and best practices;
• Availability: Patients should be able to access therapies and care regardless of an individual's income, employment, health status, or geographic location; and
• Transparency: Decisions about how prices are set and coverage decisions are made must be transparent.

The event was attended by Dwight and Sara Singleton, senior director of research, drug discovery and development policy at the Foundation. Other groups in attendance included the Alzheimer's Association, the American Diabetes Association, Friends of Cancer Research, JDRF, the Multiple Sclerosis Coalition, the National Alliance on Mental Illness, and the National Health Council.