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The Cost of Control: Financial and Administrative Burdens of Limited Distribution Network Changes in Cystic Fibrosis
Journal article   Open access   Peer reviewed

The Cost of Control: Financial and Administrative Burdens of Limited Distribution Network Changes in Cystic Fibrosis

Brittany A. Wright, Cameron J. McKinzie, Charissa W. Kam, Casey R. Tak, Lynnsey M. Knockel, Julie Langhorst, Rebecca S. Pettit, Lynda Roe, Billie Simonson, Hilary Vogt, …
Pediatric pulmonology, Vol.61(9), e71829
09/14/2026
DOI: 10.1002/ppul.71829
PMCID: PMC13572961
PMID: 42733977
url
https://doi.org/10.1002/ppul.71829View
Published (Version of record) Open Access

Abstract

Background The clinical impact of pharmacists and pharmacy technicians on the care of people with cystic fibrosis (pwCF) has been well documented within the literature, including medication access, reduction of hospitalizations, and consolidation of pharmaceutical delivery for pwCF with complex medication regimens. However, challenges related to access and affordability have become increasingly complex, increasing the administrative burden placed upon these members of the multidisciplinary CF care team. The goal of this study was to quantify the time pharmacists and pharmacy technicians at CF Foundation‐accredited care centers (CFACC) spent triaging and resolving errors, categorize the types of interventions required, and tabulate the financial burden for pwCF averted through these interventions. Methods This study was a retrospective review of pharmacy team members' interactions following a change in limited distribution network of cystic fibrosis transmembrane conductance regulator modulators (CFTRm) over a 4‐month period of time. Each site received institutional review board exemption. Measures were characterized using descriptive statistics and were analyzed in SAS v9.4 (Cary, NC). Collected data were extrapolated to be nationally representative based on the 2023 CFF Patient Registry report. Results Six CFACC and 1781 pwCF were included in this review. Of these pwCF, 216 required additional interventions following a required change in the dispensing pharmacy for their CFTRm. Collectively, 201.5 h were spent on resolution of issues during the study period with interventions successfully averting a financial burden to pwCF of226,094.73. Extrapolations of time and financial burden were estimated to be 3700 h and over 4.2 million, respectively. Conclusions Medication access and affordability continue to present significant barriers for pwCF. We aim to highlight the critical services provided by clinical pharmacy teams at CFACC as well as their integrated health‐system specialty pharmacies, and the vital role they play in improving outcomes and providing cost‐effective care for pwCF.
CFTR modulators medication access and affordability pharmacy services UIOWA OA Agreement

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