Cystic Fibrosis Care Lags Post-Pandemic, Adults Most Affected
A recent U.S. study reported by EMJ reveals that cystic fibrosis (CF) care utilization, particularly for adults, remained below pre-pandemic levels through 2023. Despite telemedicine adoption and new therapies, in-person visits and essential tests haven't fully recovered, raising concerns for chronic disease management globally.
Key Highlights
- CF care utilization in the U.S. remained below 2019 levels through 2023.
- Adults with CF experienced the most significant declines in comprehensive care.
- In-person visits, lung function tests, and bacterial cultures were particularly affected.
- Telehealth did not fully compensate for the reduction in in-person care.
- The findings highlight broader challenges in chronic disease management post-pandemic.
- Cystic fibrosis care in India faces additional unique challenges.
A recent U.S. study, prominently reported by the European Medical Journal (EMJ) on June 30, 2026, has revealed that critical care for individuals with cystic fibrosis (CF) continued to fall short of pre-pandemic levels through 2023, with adults experiencing the most significant decline. The analysis, based on data from 27,719 individuals in the U.S. Cystic Fibrosis Foundation Patient Registry, examined care utilization patterns from 2019 to 2023, focusing on recommended components such as outpatient visits, pulmonary function tests, bacterial cultures, and multidisciplinary assessments.
The core finding indicates that while care utilization, which reached its lowest point in 2020, gradually rebounded during 2021–2023, it did not fully return to 2019 benchmarks. The decline was especially pronounced among adults. For instance, the proportion of adults receiving at least four outpatient visits annually dropped from 55% in 2019 to 22% in 2023. Similarly, the percentage of adults undergoing at least four bacterial cultures decreased from 45% to 17% over the same period. Using a composite measure for comprehensive CF care—defined as at least four visits, four pulmonary function tests, four bacterial cultures, and one multidisciplinary assessment per year—only 17% of adults met these criteria in 2023, a stark decrease from 44% in 2019. Children, while showing higher utilization rates than adults across most indicators, also experienced a drop in comprehensive care, from 45% in 2019 to 38% in 2023.
The widespread adoption of highly effective cystic fibrosis transmembrane conductance regulator (CFTR) modulator therapies since 2019 has significantly improved health outcomes for many CF patients, yet this did not prevent the observed decline in care utilization. Researchers suggest that several factors might influence these care utilization rates, including the availability of CFTR modulator therapy, insurance status, individual health status, presence of complications, personal preference, and a possible 'habituation' to less frequent clinic visits during the pandemic.
The COVID-19 pandemic necessitated significant shifts in healthcare delivery, with a rapid pivot to telehealth to ensure continuity of care for chronic conditions. However, the study highlights that telehealth did not fully offset the reduction in in-person care. Approximately 30% of the CF population had no reported telehealth visits between 2021 and 2023, indicating a gap in virtual care engagement or accessibility. This finding is consistent with broader observations that the pandemic created significant barriers to the effective management of chronic diseases worldwide, leading to delays, postponements, or cancellations of regular medical visits.
The implications of this persistent decline in care are significant. Patients with chronic diseases require regular management and close follow-up to mitigate risks of adverse health outcomes. Delays in diagnosis and inadequate management of chronic conditions can lead to increased morbidity and mortality not directly related to the pandemic. The long-term consequences of such delayed care seeking are still emerging, underscoring the need for robust healthcare planning and management of chronic populations.
For an audience in India, this news holds particular relevance, even though cystic fibrosis itself is less prevalent and often underdiagnosed compared to Western populations. Studies suggest that the prevalence of CF in India might be higher than previously believed, with estimates ranging from 1:43,321 to 1:100,323, but accurate data is lacking due to under-recognition and misdiagnosis. India faces unique challenges in CF care, including a scarcity of diagnostic facilities, a limited number of trained healthcare professionals, and the high cost and limited availability of crucial pharmacologic agents. Moreover, there is no established national newborn screening program for CF, leading to late diagnoses often in advanced stages, and a significantly lower life expectancy for those diagnosed in India (7-12 years) compared to global averages. The broader context of how a pandemic can disrupt essential chronic disease management, even in a well-resourced nation like the U.S., serves as a critical lesson for India's healthcare system, which must contend with a large population and significant resource constraints. Addressing these gaps requires increased awareness, improved diagnostic capabilities, and tailored management protocols for local contexts.
The European Medical Journal is a credible, peer-reviewed, open-access medical journal, founded in 2012, that publishes quality research and insights across various medical fields. The reported study itself was published in the reputable Journal of Cystic Fibrosis. Therefore, the claims made in the EMJ article are well-grounded in recent scientific research.
In conclusion, the sustained shortfall in cystic fibrosis care post-pandemic, particularly for adults, is a concerning trend that highlights the vulnerability of chronic disease management during global health crises. This situation necessitates proactive strategies to rebuild and enhance healthcare services for chronic conditions worldwide, adapting to new realities while ensuring equitable access to comprehensive care.
Frequently Asked Questions
Why has cystic fibrosis care not returned to pre-pandemic levels?
Cystic fibrosis care, particularly in the U.S., has not fully rebounded due to a complex interplay of factors including a lasting shift in healthcare delivery patterns, patient preferences, potential habituation to less frequent in-person visits during the pandemic, and possibly evolving care needs with the widespread use of highly effective CFTR modulator therapies.
Which aspects of cystic fibrosis care are most affected?
The most significantly affected aspects of cystic fibrosis care include in-person clinic visits, essential lung function tests, and bacterial cultures. Adults with CF experienced the steepest declines in these routine, comprehensive care components.
Did telehealth help bridge the gap in CF care?
While telehealth became a vital tool for chronic disease management during the pandemic, it did not fully compensate for the reduction in in-person cystic fibrosis care. A notable portion of the CF population did not engage in telehealth visits, indicating its limitations in fully replacing comprehensive in-person assessments.
What are the potential long-term consequences of reduced CF care?
Reduced or delayed cystic fibrosis care can lead to critical long-term consequences, including a higher risk of adverse health outcomes, progression of lung damage, and potential increases in morbidity and mortality that are not directly related to acute infections like COVID-19. Regular monitoring is crucial for early detection and management of complications.
How relevant is this situation to cystic fibrosis care in India?
Although the study is U.S.-specific, the findings are highly relevant to India. India faces significant challenges in CF care, including underdiagnosis, limited diagnostic facilities, lack of trained specialists, and high treatment costs. The persistent decline in care even in well-resourced countries highlights vulnerabilities that could be exacerbated in India, emphasizing the need for robust chronic disease management strategies.
