Foundation Joins Chronic Disease Organizations to Educate Policymakers on Needs of People with CF

The Cystic Fibrosis Foundation joined 72 chronic and rare disease organizations to send a letter to President-elect Trump and Congressional leadership.

Dec. 15, 2016 | 3 min read

The letter explains the critical role that high-quality and affordable health insurance plays in helping our communities access essential treatments and care, and expresses our desire to work together to create a health care system that benefits all Americans.

“Our goal is to ensure that people with CF have the coverage they require to access the treatments they need, and that the incoming administration and Congress understand the unique needs of our community as they advance new health care policies. We look forward to working together to improve the care that our community receives and the system they use to access it,” Preston W. Campbell III, M.D., president and CEO of the Foundation.

This effort is consistent with the Foundation's ongoing work to promote policies to help ensure that everyone living with CF has access to high-quality, specialized care and adequate, affordable health insurance regardless of income, employment, health status or geographic location. For more information, read more about our governing policy principles, read the full text of the letter below, and view the complete list of organizations that signed on.


December 14, 2016

Dear President-elect Trump:

The next four years present an opportunity to build a health policy agenda for all Americans. We write on behalf of the millions of Americans living with chronic, serious and life-threatening diseases who need access to affordable health insurance and quality health care.

The individuals we represent have daily health care demands that can span the course of a lifetime. Every day, this population grapples with managing their health needs while navigating complex insurance plans within a fragmented delivery system.

Americans who rely heavily on the health care system must be assured of adequate and affordable insurance that covers their health care needs. The high cost of care and inadequate insurance has led many to skip or delay care. They deserve a health care system that will help enable them to lead longer, healthier lives.

Policies that expand access to coverage, such as those that prevent preexisting condition exclusions and allow young people to remain on their parents' plans until age 26, are critically important to this population. These policies alone, however, are not enough to ensure meaningful access to health care.

We look forward to working with you and your Administration to ensure that the needs of the patients we represent are fully considered as the health insurance and health care systems are reevaluated.

CC: Senate Majority Leader Mitch McConnell

Incoming Senate Minority Leader Charles E. Schumer

Speaker of the House Paul D. Ryan

House Majority Leader Kevin McCarthy

House Minority Leader Nancy Pelosi

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