What are the current recommendations for people with CF during this pandemic?

We recommend checking the Cystic Fibrosis Foundation's Q&A website for frequent updates.

What is the status on clinics opening? Will they look the same? What about PFTs?

Our outpatient CF clinics at Main and Liberty Campuses are back to running at nearly pre-pandemic volumes, though things may still look a little different. We continue to evaluate safety and number of people in clinic and make changes accordingly if hospital or public health recommendations change, or if COVID-19 case rates change. At the moment, all CF Physicians and nurses are back to in-person clinic, and other care team members (Dietitian, Social Workers, Respiratory Therapists) may be in-person or virtual, depending on a variety of factors, including workspace availability. We really appreciate everyone’s understanding and flexibility as we continue to provide care, while keeping everyone’s safety as our number one priority.

We’ll continue to offer completely virtual visits via Telemedicine for Cystic Fibrosis for the foreseeable future, however, we’re still learning how often is the ‘right’ frequency. The CF Community has learned that longer time between visits, especially between PFTs, is associated with decreased lung function and increased diagnosis of Pulmonary Exacerbation. We are hopeful with the expansion and use of Home Spirometry, that we’ll be able to get this important information with virtual visits and between visits. Stay tuned for more information regarding Home Spirometry. Also, make sure you ask your CF team after your next visit if your follow up should be Telemedicine or in-person.

Finally, all in-person visits will continue be screened with a phone call prior to clinic to ask about any symptoms of COVID-19, including fever, congestion, cough, shortness of breath, change in taste/smell, etc. Answering these questions honestly is extremely important, as COVID-19 is at high risk to spread, especially in the PFT Lab. If you screen positive at this call, you will get a follow up call from your nurse to discuss next steps, which may include a COVID-19 test, or having a visit without PFTs. This practice is for the safety of other patients and staff.  

All visitors to Cincinnati Children’s (patients, parents, family members, employees) will be screened when they enter the building. All visitors and employees are required to wear a mask, which will be provided, at all times at Cincinnati Children’s. Homemade cloth masks are acceptable for patients and families. Allow extra time for clinic visits to accommodate these screens.

What is the experience for people with CF and COVID-19 infections?

We are learning more and more each day. A study was published in early May of 2020 describing 40 patients with CF who contracted the novel coronavirus. While the study is small, data were encouraging and can be found here. Overall, we are encouraged that many people with CF who have been diagnosed with COVID-19 are able to manage symptoms at home.

According to the CDC, there is no evidence to suggest that people with underlying health conditions are at higher risk of becoming infected with COVID-19. There is evidence to show that people with underlying health conditions, including lung disease, are at a greater risk of developing serious illness from COVID-19 if they become infected.

Cystic Fibrosis is a complex disease and affects each person living with it differently. Speak with your CF care team directly with specific questions about your personal health and risk factors.

The Cystic Fibrosis Foundation website includes frequent updates to recommendations.

Should people with CF get the COVID-19 vaccine?

Currently, cystic fibrosis is a vaccine qualifying diagnosis in most states. Restrictions for vaccine eligibility are gradually lifting and may soon be available to everyone. In general, the CF Center recommends that patients with cystic fibrosis over the age of 16 receive the COVID-19 vaccine when it is available to them. We do ask that patients reach out to the CF care team if they have any questions or concerns. More information about the vaccine can be found here.