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As states and health systems prepare for potential surges in COVID-19 cases and intensified demand for intensive care, many are making decisions about how they will prioritize services and equipment. All human life is valuable, and we are heartbroken to know that clinicians and caretakers on the front lines of this pandemic may be forced to consider unthinkable choices as they care for their patients.
While it is important to give frontline healthcare workers guidance during the crisis, the direction must be rooted in an accurate understanding of the patient's condition and data. There is no evidence to suggest that people with CF cannot make a full recovery from COVID-19.
Alarmingly, several states -- including Louisiana and Utah -- have created regional triage guidance that reflect an outdated understanding of CF that ignores significant improvements in health status and life expectancy in recent years, including for those with advanced lung disease. Many of these guidance documents neglect to take into account the impact of recently approved therapies that treat the underlying cause of disease for most people with CF and have resulted in dramatically improved outcomes for those with advanced lung disease.
We are educating policymakers in those states, and clinicians everywhere, about how CF has changed. We have published a letter in a major medical journal and are working closely with other patient organizations on a national strategy to help ensure these guidance documents do not unfairly disadvantage individuals with serious, chronic medical conditions. In every action we take we are emphasizing that the mere presence of CF should never disqualify someone from receiving lifesaving care.
CF manifests differently in every person and each should be evaluated and triaged for COVID-19 treatment on a case-by-case basis and based on a clinical assessment. Any policy that unnecessarily disadvantages people with CF due to outdated information and perceptions is unacceptable.