CF Foundation Advocates to Protect Needs of People With CF in Post-Pandemic Medicaid Redeterminations

Medicaid beneficiaries are encouraged to update their information with Medicaid to ensure continued coverage.

May 9, 2023 | 5 min read

Medicaid has long been a crucial source of health coverage for many people living with cystic fibrosis, often filling gaps left by private insurance; roughly half of all children and one-third of adults with CF in the U.S. rely on Medicaid for some or all their health care coverage. During the COVID-19 pandemic and its economic impact, the program played an especially vital role in helping people with CF afford the specialized care they need to stay healthy. Now, with states beginning to resume disenrollments, the CF Foundation is taking steps to ensure impacted people with CF do not lose their coverage.   


As part of COVID-19 relief enacted in the Families First Coronavirus Response Act, Congress provided increased Medicaid funding to states in exchange for a “continuous coverage” requirement that prohibited states from terminating most Medicaid enrollees’ coverage until after the end of the public health emergency (PHE). During this period, states were prohibited from disenrolling Medicaid recipients unless they asked to be disenrolled, moved out of state, or passed away. As a result, millions of Medicaid-eligible people stayed covered without interruption during the pandemic.  

In December 2022, Congress passed a spending bill that delinked the Medicaid continuous coverage requirement from the end of the PHE and ended the continuous coverage protection on March 31, 2023. States are now able to resume Medicaid “redeterminations,” which assesses whether an individual is still eligible to receive Medicaid benefits based on factors such as changes in income, household size, age, and disability status. Redetermination processes and timelines vary from state to state.  

Our Advocacy

Recognizing the potential for disruptions in coverage to people with CF who utilize Medicaid, the Foundation is advocating to limit coverage loss and facilitate a smooth transition for all those impacted.  

These efforts include monitoring states’ redeterminations plans to ensure that they adhere to guidance from the Centers of Medicare and Medicaid Services (CMS), supporting those states that have requested to extend continuous eligibility, and opposing states’ efforts to enact new barriers to a person’s ability to enroll in or maintain Medicaid coverage. In states with state-based marketplaces, we have urged decisionmakers to implement a Special Enrollment Period (SEP) that matches the temporary SEP in the Federally-Facilitated Marketplace, allowing individuals who have lost Medicaid or Children’s Health Insurance Program coverage between March 31, 2023 and July 21, 2024 to enroll in an exchange plan at any time during that same period. 

We recently joined a group of like-minded organizations to call on the administration to promote transparency and accountability measures in the redeterminations process. Specifically, we recommended CMS publish state-level data on the process as soon as possible, so that stakeholders, like the CF Foundation, can intervene in time to prevent significant coverage losses. We call on the administration to hold state Medicaid agencies accountable for renewing coverage based on data the state already has, eliminating the need for eligible people to complete more paperwork.  

In addition, the Foundation continues to ask Congress and the administration to protect Medicaid during the budget and debt ceiling negotiations. Some members of Congress seek to change the rules of Medicaid and make it harder for people to qualify and keep their coverage. Any efforts to change Medicaid’s current financing structure — like per capita caps or alterations to the federal medical assistance percentage, as well as the addition of any barriers to coverage like work requirements — would harm all individuals enrolled in Medicaid. Alongside the redetermination process, these policies could result in a sharp rise in uninsured people at a time of economic uncertainty. We continue to urge the federal government to protect this important program for the people who rely on it.  

Finally, we’ve worked closely with CF care center clinicians to ensure they are aware of the redetermination processes in their states and have the necessary resources to assist impacted patients.      

What You Can Do

If you utilize Medicaid, be sure your contact information with Medicaid is updated and promptly reply to any communication you receive from your state. Individuals may be disenrolled due to changes in residency, income, age, or lack of information substantiating eligibility. 

If you need assistance, our case managers can review your insurance options and help you make the transition to new insurance. Connect with CF Foundation Compass by calling 844-COMPASS (844-266-7277), emailing, or submitting an online request form.  

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Are you a Medicaid recipient? Make sure you update your status today.

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