Page 19 - CF Roundtable - Winter/Spring 2026

We received a lot of questions about Medicare coverage and the answers are discussed in the article on page 18. If you
have questions related to Social Security benefits, health insurance, employment, or education rights please email the
CF Legal Information Hotline at CFLegal@sufianpassamano.com or call 1-800-622-0385. The CF Legal Information
Hotline receives funding from the CF Foundation but is not operated by employees of the CF Foundation.
Nothing in this article is meant as legal advice and is only meant to be legal information. Information provided is based on
Medicare regulations in force as of December 1, 2025. Medicare rules can change so be sure you understand Medicare
rules in 2026 and beyond.
RESEARCH ROUNDUP (continued from page 15)
Dyspnea-Related Kinesiophobia As A
Barrier On Cystic Fibrosis: The Role
Of Children And Parents
https://tinyurl.com/3vy6a2py
Children with CF may be physically inactive
due to disease progression and infection
risk, with parents sometimes being overly
protective. This study aimed to explore
the relationship between dyspnea-related
kinesiophobia in children and their parents
and the child’s respiratory muscle strength,
physical activity, fitness, and quality of life.
Children with CF and their parents show high
levels of dyspnea-related kinesiophobia.
In children, it was associated with lower
respiratory muscle strength and reduced
quality of life, while parental dyspnea-
related kinesiophobia was more strongly
associated with the child’s physical
activity, fitness, and quality of life. Parental
dyspnea-related kinesiophobia may be
more closely related to the child’s functional
abilities than the child’s dyspnea-related
kinesiophobia, highlighting the potential
value of addressing psychosocial factors
in CF rehabilitation.
Arterialized Oxygen Tension And
Unfavorable Clinical Outcomes In
Pediatric Cystic Fibrosis
https://tinyurl.com/3nwu22h4
Maintaining good lung function is a primary
goal in managing CF. As spirometry
lacks sensitivity for detecting mild lung
disease, early progression often remains
unrecognized. To overcome this limitation,
more sensitive monitoring tools are needed.
Researchers evaluated arterialized oxygen
tension (pO2) as an easily accessible, and
widely applicable surveillance method.
Early abnormal pO2 at age 5 significantly
correlated with accelerated FEV1 decline
and a greater probability for CF-related
complications. Implementing arterialized
oxygen tension may offer valuable insights
beyond spirometry alone in identifying
high-risk patients.
“All My Food Is Customized*”:
Barriers & Facilitators Concerning
Nutrition For Persons Living With
Cystic Fibrosis
https://tinyurl.com/44hxpfst
Maintaining optimal nutrition is often an
important concern for PWCF. With the
introduction of effective modulators, the
focus has now shifted from preventing
malnourishment to instead stabilizing
weight and preventing further weight
gain. Research on how PWCF experience
and manage their nutrition in this new
era remains limited. Understanding these
supports and challenges is essential for
developing effective and personalized
nutritional strategies for PWCF. Enhancing
access to knowledgeable dietitians,
simplifying nutritional recommendations,
and addressing cost barriers can
significantly improve nutritional outcomes.
Future research should focus on applicable
solutions that utilize existing successful
strategies while addressing common
barriers many with CF face.
Real -World Impact Of Previous
Exposure To CFTR Modulators On
Clinical Parameters And Chronic
Sinus Disease In People With Cystic
Fibrosis On Elexacaftor-Tezacaftor-
Ivacaftor
https://tinyurl.com/43327xhu
ETI therapy is associated with improved
%predicted FEV1 and BMI and decreased
Pseudomonas and MRSA colonization in
pwCF. With ETI therapy, sinus CT scans in
pwCF showed improvement using both LM
and SL scoring systems. These changes
were independent of previous exposure to
CFTR modulator therapies.
Medication Reconciliation And Drug
Interactions In Adult Cystic Fibrosis
Patients Attending An Outpatient
Clinic: A Cross-Sectional Study
https://tinyurl.com/26ejmd9d
Outpatient medication reconciliation (MR)
studies in adult CF patients are scarce.
This project aims to evaluate outpatient MR
in adult CF individuals and to identify the
prevalence of discrepancies and describe
associated factors. Additionally, the study
examines drug-drug interactions (DDI) and
challenges in accessing medications. It’s a
cross-sectional study with prospective data
collection, involving 65 participants. The
median number of medications used was
9. Thirty-five patients used medications
prescribed only by the CF outpatient clinic,
while 30 also had external prescriptions.
Fifty-two patients engaged in self-
medication. Fourteen patients had serious
DDIs, and 26 had type D DDIs. External
prescriptions were significantly associated
with serious DDIs. Most patients reported
difficulty accessing medications. A high
prevalence of discrepancies was observed,
linked to the number of medications and
self-medication.
A Phase IIa, Single-Blind,
Placebo-Controlled, Parallel-
Group Study to Assess Safety,
Tolerability, and Pharmacokinetics/
Pharmacodynamics of Brensocatib in
Adults with Cystic Fibrosis
https://tinyurl.com/bdeccm9s
Brensocatib, an oral, competitive,
and reversible inhibitor of dipeptidyl
peptidase 1, reduces exacerbations
and lung function decline in non-cystic
fibrosis bronchiectasis. This study
aimed to evaluate the pharmacokinetics,
pharmacodynamics, safety, and tolerability
of brensocatib in adults with CF, comparing
these findings with data from previous
trials in healthy adults and in those with
NCFBE to inform dose selection for future
clinical trials. Brensocatib demonstrated
consistent PK profiles independent of
CFTR therapy and comparable to those
of healthy and NCFBE adults. Brensocatib
reduced blood and sputum NSP levels. The
safety profile was comparable to previous
studies, with no new safety concerns
identified, supporting the use of similar
dosing for adults with CF as for other
populations. These findings advocate for
further investigation of brensocatib in CF.
 Research Roundup continued on page 21
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