For those of us who can’t take modulators, it can sometimes feel like you’ve been left behind. But I have found hope and motivation by participating in clinical trials.
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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 comments provided to the U.S. Departments of Health and Human Services, Labor, and Treasury, the Partnership for Protecting Coverage supported the Mental Health Parity and Addiction Equity Act but asked that the departments remove proposed exceptions which would undermine important progress.
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Ad hoc patient coalition provides comments to the Centers for Medicare and Medicaid Services on draft guidance related to the Medicare Prescription Payment Plan, arguing the importance of the plan in ultimately lowing the cost of prescription drugs for enrollees.