This year’s program marked the largest in-person advocacy event in the Foundation’s history.
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Take it from me, dating with cystic fibrosis can be hard — from not having the energy to keep up with our partners to dealing with all the not-so-sexy aspects of the disease. But it’s important to not settle for anything less than the love and support we deserve.
Living with CF means I quickly became familiar with the patient side of the health care field. My experiences in the hospital have motivated me to become the kind of nurse that listens to and advocates for their patients.
In a letter to the House Energy & Commerce Health Subcommittee, the Foundation joins a cohort of patient organizations to stress the importance of addressing antimicrobial resistance and prioritize the passage of the PASTEUR Act.
In a letter to the House Energy & Commerce Committee, the Cystic Fibrosis Foundation states its support for legislation that addresses antimicrobial resistance, orphan drug exclusivity, and access to specialized care across state lines.
In a letter to Missouri's House Committee on Health and Mental Health Policy, the Cystic Fibrosis Foundation expressed its support for HB 1628, which would require insurers to apply third-party assistance to out-of-pocket maximums and other patient cost-sharing requirements.
In a statement following their filed amicus brief, the Partnership for Protecting Coverage called on the U.S. Court of Appeals for the Fifth Circuit to preserve access to evidence-based preventative services without cost-sharing as required under the Affordable Care Act as the court hears oral arguments in Braidwood v. Becerra.
In a letter to the Tennessee Senate Committee on Commerce and Labor, the Cystic Fibrosis Foundation expressed support for SB 2008 which would require covered benefits to be considered essential health benefits and limit alternative funding programs in state-regulated plans.
In a letter to bill sponsors, the Cystic Fibrosis Foundation signaled their endorsement of H.R. 5434, the Stabilize Medicaid and CHIP Coverage Act, which will provide reliable access to care and continuous coverage to all adult Medicaid beneficiaries.