On Feb. 2, 2023, Global Pharma Healthcare voluntarily recalled all lots of their Artificial Tears Lubricant Eye Drops, distributed by EzriCare, LLC and Delsam Pharma, due to possible contamination by Pseudomonas aeruginosa. More information can be found here.
Ryan Thomas
The year 2021 was the second year of the COVID-19 pandemic and the third year elexacaftor/tezacaftor/ivacaftor was available for people with CF. The 2021 Registry data reflect a
combination of factors that impacted the lives of people with CF during the year. The favorable trends in lung function, pulmonary exacerbations, infection rates, and survival that were observed in 2020 data continued in 2021. These are strong indicators that broad uptake of elexacaftor/tezacaftor/ivacaftor is contributing to better health outcomes
Some highlights:
Mean lung function is up 13% for 10 year olds, 24% for 18 year olds and 27% for 30 year olds.
Predicted survial has increased by 20 years since the year 2000.
Chronic pseudomonas infection has been reduced from 43% to 28%.
Over half of CF adults now have a job.
Pregancy rates have more than doubled.
CF exacerbations have been cut in half.
Lung transplants have been reduced by 2/3!
This news is all really amazing.
Ryan Thomas
Nirmatrelvir/ritonavir (Paxlovid) is an oral treatment for COVID-19 recently authorized for patients aged 12 years or older who weigh at least 88 pounds (40 kg). It is indicated for patients with mild to moderate COVID-19 who are at high risk of developing severe disease. This includes people with CF. There are expected interactions with cystic fibrosis transmembrane conductance regulator modulators (Trikafta, Kalydeco, Orkambi, Symdeco) and this medication whcih can lead to increased levels of the modulator in people. We strongly encourage you to call the CF Center about dose adjustments for your modulator and all other medications in the chronic treatment regimen if you need to use Paxlovid.
A Michigan State University College of Human Medicine researcher has been awarded a federal grant to study a gene therapy treatment for cystic fibrosis, a potential cure for CF. The grant from the National Institutes of Health will allow a team of researchers led by Xiaopeng Li, PhD, an associate professor in the Department of Pediatrics and Human Development, to study how CFTR gene (the causal gene for cystic fibrosis) mutations in the small airways in the lungs of cystic fibrosis patients lead to life-threatening infections. Li will lead a team that includes College of Human Medicine researchers Jeremy Prokop, PhD and Christopher Waters, PhD. The team also includes four pulmonologists – Ryan Thomas, MD - from MSU College of Human Medicine and Reda Girgis, MD, Susan Millard, MD, and John Schuen, MD – from Spectrum Health and Helen DeVos Children’s Hospital Cystic Fibrosis Center.
More information below:
Your knowledge about your daily care matters.
Indiana University School of Medicine is conducting the HERO-2: Home Reported Outcomes Study,Indiana University School of Medicine is conducting the HERO-2: Home Reported Outcomes Study, powered by Folia and funded by the CF Foundation. This is an observational study focused on collecting everyday observations that individuals with CF and their families make in the course of their daily lives.
Participants will use the Folia app to collect weekly info on treatment use and symptoms, complete monthly check-ins through the app, and will be compensated up to $260 for participation over a period of 12 months.
Study data collected through Folia will be linked to the CFF Patient Registry. No additional clinic visits are required for this study. MSU CF Center is serving as a referral center only and is not performing or responsible for this study.
Eligibility Requirements
● U.S.-based adult diagnosed with CF, ora Parent/Guardian of a child 12+ years diagnosed with CF
● Using Trikafta for an on-label indication
● Installation and weekly use of the Foliaapp or Folia web on a personal computer
● Cannot be post-transplant
● Cannot be enrolled in the randomized portion of the SIMPLIFY study
What will participation involve?
● 12-month study participation
● Each week, log into the app to provide treatment use & symptoms data for at least 3 days (this takes approximately 90 seconds)
● Each month, complete a 10-minute survey on changes to your care & health
● Support is available throughout the study period, however no additional clinic visits are required. 
Enroll in the HERO-2 study today!
Enter Invite Code H2135 into the Folia app. This code is specific to the MSU CF Center.
If you have any questions about the Folia app, please contact connie@foliahealth.com.
For information regarding the study, please contact the Principal Investigators at cyndbrow@iu.edu
