CF Foundation Hosts Congressional Briefing on Protecting People With CF and Other Pre-Existing Conditions

The event, held at the U.S. Capitol Visitor Center, aimed to educate members of Congress on the impact of the proposed rule to expand short-term insurance plans on people with serious and chronic health conditions. 

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On April 11, the Cystic Fibrosis Foundation joined the American Heart Association, the Leukemia and Lymphoma Society, American Lung Association, March of Dimes, and other patient advocacy organizations to host a congressional briefing on the short-term insurance rule proposed by the Trump administration. More than 75 people attended the event, held at the U.S. Capitol Visitor Center.  

A recent proposal by the Trump administration on short-term, limited-duration health plans would extend the maximum length of these insurance policies from 90 days to nearly one year. These policies were meant to be a short-term solution, not to provide long-term comprehensive coverage. Short-term health plans are not required to comply with critical consumer protections, which means that insurers can impose lifetime and annual caps on coverage, limit what services are covered, and charge people with pre-existing conditions higher premiums or deny them coverage completely. 

The expansion of short-term insurance policies would likely divide the marketplace into plans for healthy people and plans for sick people, driving up costs for people with cystic fibrosis who already experience a significant financial burden caring for their disease. 

“Short-term insurance plans do not offer meaningful coverage for anyone, and expanding the use of these types of plans will cause health care costs to rise for people who rely on the individual marketplace,” said Mary Dwight, senior vice president of policy and advocacy at the Foundation. “We call on Congress to urge the administration to withdraw the short-term rule and move forward with a solution that enables the individual marketplace to work both for people who are healthy and for those who have expensive or chronic diseases, such as cystic fibrosis.” 

The panel discussion was moderated by Cynthia Pellegrini, senior vice president of public policy and government affairs at March of Dimes. The panelists included Dwight; Timothy Jost, emeritus professor at Washington and Lee University School of Law; Kris Haltmeyer, vice president, legislative and regulatory policy at Blue Cross Blue Shield Association; and Sam Bloechl, an adult with non-Hodgkin lymphoma. Bloechl had a short-term insurance plan when he was unexpectedly diagnosed with cancer and was subsequently denied coverage for his care because his policy did not cover pre-existing conditions. 

The individual insurance market is the source of insurance coverage for some people in the cystic fibrosis community. Finalizing the short-term rule could mean that the cost of premiums for these families will increase. 

“We have relied on the individual marketplace for health insurance for three years,” said Ginger Birnbaum, mother of a child with CF. “Currently, we feel at a tipping point in affording our coverage and don't know how we will sustain another spike in premiums.”

To stay informed about the Foundation's advocacy work and get involved, text “FIGHTCF” to 52886 or sign up for the Foundation's Advocacy Alerts.

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