I was recently diagnosed with cystic fibrosis at age 67. Although I love my CF care team, I think it will be important for them to understand age-related care in addition to CF care — especially as the CF population ages.
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I have had a fortunate life with cystic fibrosis given the fact that I married, had two kids, and a career. However, with increasing — and sometimes bewildering — health issues, I’m beginning to wonder whether it’s my CF or just aging, or something in between.
People like me are living longer — median survival for someone with cystic fibrosis is now 56 thanks to research and care. But as I grow older, my health is getting more complicated and I'll need my care to keep up.
In comments provided to the U.S.
CF Foundation provides comments to the U.S. Department of Health and Human Services and the Centers for Medicare and Medicaid Services responding to the 2024 Medicare Physician Fee Schedule, focusing on improving access to care through telehealth.
Partnership to Protect Coverage provides comments to the U.S. Department of Health and Human Services, the Treasury Department, and the Department of Labor on a proposed rule concerning short-term, limited-duration insurance plans.
Partnership to Protect Coverage response to request for information issued by the Treasury Department, the Consumer Financial Protection Bureau, and the Department of Health and Human Services on medical credit cards, loans, and other financial products used to pay for health care that may contribute to medical debt.
The Cystic Fibrosis Foundation and the Cystic Fibrosis Therapeutics Network sent a letter to the U.S. Food and Drug Administration’s Center for Biologics Evaluation and Research to request a meeting to discuss novel approaches to clinical trial design for cystic fibrosis nucleic acid-based therapies.
Ad hoc patient coalition provides comments to the Centers for Medicare and Medicaid Services on draft guidance related to the Medicare Prescription Payment Plan, arguing the importance of the plan in ultimately lowing the cost of prescription drugs for enrollees.
Partnership to Protect Coverage issues a statement encouraging all states to use Medicaid flexibilities to ensure patients have ample opportunity to respond to redetermination requests, and to minimize disruptions in their health coverage.