What to Know About Cystic Fibrosis and COVID-19

Cystic fibrosis (CF) is a genetic disorder affecting approximately 35,000 people in the United States. It causes sticky mucus to build up in the lungs and digestive system. As CF affects the lungs, you may be concerned about what it may mean for you if you contract COVID-19. 

The Centers for Disease Control and Prevention (CDC) states that there may be an increased risk for severe illness from the virus that causes COVID-19 if you have CF. They also note an increased risk for severe illness from COVID-19 if you are immunocompromised from a lung transplant or another organ transplant. However, research is ongoing and changes regularly as scientists learn more about COVID-19.

What does this mean for you if you, or someone close to you, has CF? This article will explore the current research about risk, treatment, and staying safe regarding CF and COVID-19. 

Cystic Fibrosis and COVID-19 Risk

Due to the low numbers of people with CF who have contracted COVID-19, it is difficult to ascertain the impact of the virus on the CF community. However, there is a global collaboration of medical specialists investigating the effect of COVID-19 on people with CF.

So far, the results from this collaboration are encouraging. Published in the Journal of Cystic Fibrosis, the global collaboration study results show that the small number of people with CF who have had COVID-19 have not had more severe symptoms than expected.

The study also identified that the number of people with CF infected with COVID-19 is about half the general population levels. This is thought to be due to the CF community strictly adhering to public health measures—such as social distancing, mask wearing, and shielding—to stay safe.

Researchers have also discussed that people with CF may even be significantly protected against infection from SARS-CoV-2, the infection that causes COVID-19. However, much further research is needed in this area to confirm this and establish why.

Despite the global study’s encouraging results, stages and symptoms of CF vary greatly from excellent lung health to severe chronic airway disease. Those who have received an organ transplant should note, however, that they are at greater risk of serious illness from COVID-19 due to anti-rejection medication that suppresses the immune system.

CF is a complex disease that affects everyone differently, and symptoms vary at each stage. Therefore, it is recommended that you speak to your CF healthcare team about your own personal risk and the measures you should take to stay safe during the pandemic. 

Complications of Cystic Fibrosis and COVID-19

The symptoms of COVID-19 can be similar to those with CF. However, one of the predominant symptoms of COVID-19 is fever, while it is unusual for people with CF to develop a fever as part of their usual CF symptoms. If you are experiencing symptoms and are not sure if they are due to CF or COVID-19, contact a healthcare professional for advice.

Most people with CF are not affected any more by COVID-19 than the general population, but two categories of people with CF might be at increased risk for severe illness:

• Patients with CF who have had a lung or other solid organ transplant
• Patients with CF whose best FEV1 was less than 40% predicted in the year before they were infected

FEV stands for forced expiratory volume, and FEV1 is the amount of air you can force from your lungs in one second. This measurement is used to establish the severity of lung disease. An FEV1 of less than 40% predicted indicates severe lung disease.

Professional bodies advise that everyone with CF should follow public health measures to reduce exposure to COVID-19. This is particularly important for those who have severe lung disease or have had an organ transplant.

Cystic Fibrosis Treatments and COVID-19

The CDC advises that you should not stop any of your CF medications, including those containing steroids (corticosteroids). CF medication is not considered to interfere with COVID-19 outcomes or prognosis.

You should also ensure that you have a 30-day supply of your medicines in case of the requirement to quarantine and to avoid triggers that may make your CF symptoms worse.

If you have CF, you should continue to maintain your regular daily care treatments and regimens. Staying healthy and staying on top of your CF regimen are two of the best things you can do during the pandemic to manage your condition.

If you are worried about attending a hospital or clinic appointment for CF, speak with your healthcare provider. They can advise you of the measures in place to ensure your visit is safe. Most healthcare teams will work with you and advise you if an in-person visit is recommended.

Some clinics/hospitals have introduced telehealth appointments for routine visits to help avoid unnecessary risk of exposure to COVID-19. It is vital that you don’t miss any of your ongoing CF appointments, so if you are unsure about attending in person, contact your care team for direction.

How to Stay Safe

One of the best ways to stay safe with CF during the pandemic is to follow public health guidance to lower the risk of catching COVID-19. The same precautions for infection prevention advised for the general population are recommended for people with CF.

Specifically, you should:

• Continue CF medication as prescribed.
• Keep a 30-day supply of medicines at home.
• Continue your CF regimen as normal and attend your scheduled CF medical appointments. If you are concerned about attending an in-person appointment, consult with your healthcare professional. 
• Wash your hands regularly. Wash with soap and water for at least 20 seconds. If soap and water are not available, use a hand sanitizer containing 60% alcohol.
• Avoid close contact with others, and practice social distancing.
• Wear a face mask in public settings and where social distancing is not possible.
• Avoid crowded situations and unnecessary travel.
• Practice self-monitoring.
• Avoid contact with unwell people.

Call your healthcare provider if:

• You have concerns about your condition or treatment.
• You think you may have been exposed to COVID-19.
• Someone in your household has symptoms of or has been diagnosed with COVID-19.
• You have new signs or symptoms of illness and are not sure if they are related to COVID-19 or your CF.
• You have any medical concerns or questions.
• You have questions about the COVID-19 vaccination.

A Word From Verywell

Having a condition like CF may make you feel worried during the pandemic. However, medical research shows that it does not necessarily put you at a higher risk of severe COVID-19 symptoms.

If you have concerns about your level of risk, the best thing to do is to speak to your CF team. They can advise you of the best way to stay safe and manage your stage of CF.

The information in this article is current as of the date listed. As new research becomes available, we’ll update this article. For the latest on COVID-19, visit our coronavirus news page.