Many states and health systems are creating guidelines for frontline health care workers as they determine how to prioritize lifesaving services and equipment during a potential surge of COVID-19 cases. Alarmingly, several states have created regional triage guidance that reflect an outdated understanding of cystic fibrosis and run the risk of denying people with CF care without taking current clinical realities into account. Thanks to advances in treatment options and improvements in care, the median predicted age of a survival for people living with cystic fibrosis in the United States is approaching 50 years of age. With advances in therapies such as highly effective CFTR modulators, we expect that age will continue to climb until there is a cure.
While it is important to give frontline health care workers guidance during the crisis, the direction must be rooted in an accurate understanding of the patient's condition and prognosis, and ensure an individualized assessment based on their current manifestation. There is no evidence to suggest that people living with cystic fibrosis cannot make a full recovery from COVID-19.
The CF Foundation is educating policymakers and clinicians about how CF has changed. We recently published a letter to the editor in the American Journal of Respiratory and Critical Care Medicine that details intensive care considerations for people living with CF during the COVID-19 pandemic.
We are working closely with other patient organizations to execute a national strategy to help ensure these triage guidance documents do not unfairly disadvantage individuals with serious, chronic medical conditions. We believe all plans need to be rooted in the following principles:
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Transparency: Triage guidance documents should be transparent and publicly available, so patients understand how decisions are being made.
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Equity: It is critical that any plan for allocating scarce medical resources ensures all patients -- regardless of underlying conditions -- are equally eligible for treatment based on their current clinical presentation. Decisions about who receives care should be based on the patient's likelihood of benefitting from a treatment; no patient should be made ineligible for care due to the mere presence of an underlying condition.
- In CF, this means that guidance must not deprioritize or exclude from care individuals based on a cystic fibrosis diagnosis or FEV1. Such criteria are based on an inaccurate understanding of the current survival outcomes for the cystic fibrosis population and does not factor in the short- and long-term impacts of disease-modifying CF therapies.
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Evidence-based decision making: Triage guidance should reflect the latest medical evidence when referencing specific conditions and institutions should involve disease-specific specialists when drafting their guidance.
- In CF, recent studies reveal that critical care outcomes are improving, with better than expected survival and functional recovery from respiratory failure caused by influenza and other acute infections. These data prompted the 2020 CF Foundation consensus guidelines for the care of individuals with advanced CF to recommend that individuals be considered eligible for intensive care.
Learn more about these guidance documents and actions the Foundation is taking from Mary Dwight, senior vice president and chief policy and advocacy officer.
We are also asking the community to take action and send messages to lawmakers explaining why the mere presence of cystic fibrosis should never disqualify someone from receiving lifesaving care.