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The following questions and answers address concerns from the community about COVID-19. It includes information on the risk to people with underlying health conditions, like cystic fibrosis, and how to protect yourself and your loved ones living with CF.
CF and COVID-19
Are people with CF at increased risk from COVID-19?
- Overall, children and adults with CF with COVID-19 are doing better than initially expected. Many have recovered by managing their illness at home.
- However, for some with underlying health conditions, including chronic lung diseases like cystic fibrosis, evidence suggests there is greater risk for serious illness if infected with the virus that causes COVID-19.
- People with CF who have had a lung or any solid-organ transplant may be particularly vulnerable to serious illness from COVID-19 due to medications that suppress their immune systems to prevent organ rejection. For this reason, the CDC has additional recommendations on vaccine doses and treatments to reduce severity of illness before exposure to the virus.
- People living in the same household as someone who has had a transplant should also be fully vaccinated and take precautions to reduce risk of spreading the virus.
"Because I am immunocompromised after having a lung transplant, I still take extra precautions with COVID-19." — Katherine, adult with CF, from the CF Community Blog
- Data from the CF Foundation’s Patient Registry help us understand how people with CF have been impacted by the pandemic.
- For more on how people with CF managed their health in 2020 amid the pandemic, download CF Care and COVID-19.
- For outcomes of COVID-19 on children and adults with CF, read the published reports from a global effort.
How can I reduce the risk of getting COVID-19?
- Guidance from the CDC to reduce risk from COVID-19 include much of the infection prevention and control precautions that people with CF and their families have always taken. These precautions include:
- Get up to date with your vaccines for COVID-19, including booster shots or an additional dose if you qualify.
- Wear a mask that fits snugly against your face.
- Keep a six-foot (2 arm lengths) distance from people outside your household.
- Avoid indoor spaces that have little air flow and outdoor spaces that are crowded.
- Test to prevent spreading the infection to others. If you test positive, let your care team know since you may qualify for specific treatments that will reduce your severity of symptoms.
- Wash your hands with soap and water or use hand sanitizer if you don’t have soap and water.
- Minimize travel and if you need to travel, take precautions.
- Your health and personal circumstances may require additional steps to protect yourself. This is where you can:
- Assess your personal risk and discuss the results with your family and friends to make informed decisions about your daily life.
- Learn about CF and workplace accommodations and how to protect yourself at work on the CDC page about workplaces and businesses.
- Partner with your CF care team, who can provide additional guidance and resources unique to CF treatments and care. If you test positive, your care team can let you know if you qualify for treatments that must be taken within 5 days of symptoms and are in limited supply.
- Share information about CF and COVID-19, including blogs from the community, to help others understand how to help protect your health and the health of those around you.
"Because my husband has cystic fibrosis, I take extra precautions to protect him from COVID-19 exposure." — Liz, married to an adult with CF, from the CF Community Blog
The CF Foundation encourages vaccination, including boosters, for all people with CF and their families who are eligible to receive one. All authorized vaccines have been shown to be safe and effective, especially at preventing hospitalizations and death. Side effects have been rare and minor for most people.
We strongly encourage all unvaccinated people with CF to get vaccinated as soon as possible and talk to their care teams if they have questions. We also encourage people who are immunocompromised and have received a vaccine to talk with their transplant or care team about getting an additional dose. Read the Foundation's statement here.
What can I do if I have COVID-19?
- If you think you’re infected with the virus that causes COVID-19, there’s a lot you can do to reduce the severity of symptoms and reduce the risk of spreading it to others:
- If you feel sick with cold or flu-like symptoms, stay home to separate yourself from others, and get tested as soon as you can. Learn about testing, including how to order free tests delivered to your home on the CDC page about testing.
- If you test positive for COVID-19, let your CF care team know. They can determine if you qualify for treatments to reduce the risk of severe symptoms or hospitalizations. These treatments must be taken within 5 days of symptoms and are in limited supply.
- If you feel severe symptoms, like more trouble breathing than usual, go to the local emergency room or call 911. Read the latest from the CDC on when to seek emergency care.
"What I thought was a cold turned out to be COVID. I shared my positive test result with my CF care team. Not only did they let me know of an important drug to reduce the risk of getting severe symptoms, but they helped me find it since the drug was in short supply." — Carmelina, adult with CF, from the CF Community Blog
I had COVID-19, should I still get vaccinated?
- Yes, the CDC recommends getting vaccinated even if you have had COVID-19 because it is not clear how long natural immunity lasts. A vaccine may offer longer-term protection from COVID-19, including new strains of the virus, than natural immunity.
Are there drug interactions with CF medications? Specifically, CFTR modulators like Trikafta®?
- For vaccines against COVID-19, there is no data that lead us to believe that the vaccines will interact with CF medications, including CFTR modulators.
- However, for oral antiviral treatments that may be prescribed to reduce severity of illness from COVID-19, there is data to suggest interaction with CFTR modulators.
- We strongly encourage that all people with CF discuss any concerns about medications and COVID-19 with their care team.
Can I get a COVID-19 vaccine at the same time as another vaccine, like for the flu?
- Yes, the CDC states that people can receive a COVID-19 vaccine at the time they receive other vaccines, such as for influenza or shingles.
- Staying up to date on all vaccines, like getting your seasonal flu shot, is really important for people with CF. Symptoms that are mild in others can be severe in people with CF who are at greater risk for developing serious lung infections like pneumonia.
How much does a COVID-19 vaccine cost?
- Most people will be able to get a vaccine, including boosters, without paying out of pocket, including those who do not have health insurance. However, in certain circumstances, you may be charged by your doctor or health care provider for giving you the shots (the cost of the vaccine itself is covered by the U.S. government).
- If you have questions about whether getting a COVID-19 vaccine is covered by your health insurance or about cost-sharing, call Compass at 844-COMPASS (844-266-7277).
Is it safe for my child to attend school in person?
- For more information on COVID-19 and school, see CF and School During COVID-19.
How is the Foundation advocating on behalf of the community related to COVID-19?
- We are actively engaged in policy efforts to protect patient safety and ensure access to care for people with CF during this difficult time. We are closely watching and advocating for the issues and policies related to support for people with CF and their families; access to care and coverage support; and ongoing research and development support.
- For an in-depth look at our advocacy efforts surrounding COVID-19, you can read more here.