Research Article
Ivacaftor Therapy in CF Patients: Single Center Experience
Pritish Mondal,
1
Amber Loyson,
1
Jorge Lascano,
2
and Satyanarayan Hegde
3
1
Department of Pediatrics, University of Florida, 1600 SW Archer Road, Suite HD 604, P.O. Box 100296, Gainesville, FL 32610, USA
2
Division of Pulmonary, Critical Care and Sleep Medicine, Department of Medicine, University of Florida, 1600 SW Archer Road, P.O.
Box 100225, Gainesville, FL 32610, USA
3
Division of Pediatric Pulmonary Medicine, Department of Pediatrics, University of Florida, 1600 SW Archer Road,
P.O. Box 100296, Gainesville, FL 32610, USA
Correspondence should be addressed to Satyanarayan Hegde; hegdes@ul.edu
Received 8 May 2014; Revised 3 September 2014; Accepted 15 September 2014; Published 22 October 2014
Academic Editor: Gernot Zissel
Copyright © 2014 Pritish Mondal et al. his is an open access article distributed under the Creative Commons Attribution License,
which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
Ivacator is the irst novel cystic ibrosis pharmaceutical that acts at the molecular level to potentiate cystic ibrosis transmembrane
conductance regulator (CFTR) function and was irst approved for clinical use in 2012. We are sharing our single center experience
of ive patients: four from pediatric age group and one adult patient. All patients had both subjective and objective improvements
in their health. Despite established lung disease, our patients had signiicant improvement in both their FEV1 (forced expiratory
volume in 1 second) and FEF
25–75
and BMI (body mass index). Larger studies demonstrated only 6.7% improvement in mean FEV1
ater starting Ivacator therapy but their patient population had normal lung function to begin with. In contrast our case series
demonstrates that, in patients with established lung disease and diminished lung function, Ivacator can be expected to result in
much higher recovery in lung function. Mean FEV1 improved by 35% in our case series. Ivacator is extremely expensive, costing
$300,000 per patient per year requiring lifelong therapy, hence requiring prior authorizations from most third-party payers in the
USA. he knowledge shared from our experience will be useful for other clinicians to petition healthcare policymakers on behalf
of their patients.
1. Introduction
Cystic ibrosis (CF) is the most common life-threatening
autosomal recessive disease in the USA [1]. here is a
wide variety of gene sequences in cystic ibrosis and more
than 1900 CF mutations have been identiied [2]. Although
daily airway clearance therapies and pancreatic enzyme
replacement are keys to CF management, the introduction of
Pulmozyme and the introduction of inhaled antibiotics were
two milestones in CF management and have become routine
care in established lung disease in CF patients. However, there
was no known medication that could correct this disease
and its underlying molecular defect until recently. Ivacator,
also known as Kalydeco, is the irst marketed drug which
restores the function of the cystic ibrosis transmembrane
conductance regulator (CFTR). It was approved by the United
States Food and Drug Administration (FDA) in January 2012
for treating cystic ibrosis patients with G551D mutation,
older than six years. It has shown to be efective as evidenced
by reduction in the sweat chloride content of the subjects as
well as by the improvement in FEV1 up to 10 percent [3].
Due to its prohibitive cost (approximately $300,000/
patient/year), Ivacator therapy requires prior authoriza-
tion from insurers. hese insurers oten rely on published
postmarketing data in order to add newer therapies to
their approved lists. In premarketing clinical trials, Ivacator
demonstrated sustained improvement in FEV1, body mass
index (BMI) and the frequency of pulmonary exacerbations
[3]. Recently Rowe et al. [4] published a large prospec-
tive study with six-month followup of Ivacator therapy
demonstrating modest but signiicant improvement in lung
function in relatively healthy patients. We are sharing our
single center experience of ive patients at the University of
Florida Pediatric and Adult Cystic Fibrosis Program. We have
followed up our patients for 15 months.
Hindawi Publishing Corporation
Advances in Medicine
Volume 2014, Article ID 947923, 5 pages
http://dx.doi.org/10.1155/2014/947923