COVID-19 Community Questions and Answers

The Cystic Fibrosis Foundation has prepared Q&As to address key concerns we have heard from the CF community regarding the coronavirus (COVID-19) outbreak, including information from the CDC on the risk to people with underlying health conditions and steps you can take to protect yourself and your loved ones living with cystic fibrosis.

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We are aware that the coronavirus (COVID-19) outbreak is causing significant concern, particularly within the cystic fibrosis community. The following Q&As are intended to address key concerns the Cystic Fibrosis Foundation has heard from the CF community about COVID-19, including information from the Centers from Disease Control and Prevention (CDC) on the risk to people with underlying health conditions and steps you can take to protect yourself and your loved ones living with cystic fibrosis.

Latest COVID-19 Updates

Vaccine Authorization for Children Ages 5–11

Which vaccines are authorized for children ages 5–11? (updated November 10, 2021)

The Pfizer-BioNTech vaccine (COMIRNATY®) is authorized for children ages 5 and older.

Is the vaccine safe for children ages 5 to 11 years? (updated November 10, 2021)

No serious safety concerns related to the vaccine seen in clinical trials. You can discuss the known benefits and risks with your doctor or care team. They can review the safety data from clinical trials, including the potential side effects, and discuss your child’s circumstances, such as health status, school, or household situation.

Will the vaccine be available for 5- to 11-year-olds right away? (updated November 10, 2021)
  • Vaccines for children are now available. Supply will be limited at first but should increase quickly as more doses are shipped to distribution sites.
  • You can find local vaccination sites at vaccines.gov, via local health departments, local school systems, and pediatricians’ offices.
What are the side effects in children who have been vaccinated? (updated November 10, 2021)
  • Common side effects have been similar to those of adults, including pain at the injection site, fatigue, muscle aches, chills, and fever.
  • Vaccine manufacturers and public health officials will monitor side effects in children as they have in adolescents and adults.
What safety measures are in place to ensure my child receives the appropriate dosage? (updated November 10, 2021)

To avoid confusion, vaccines for children ages 5 to 11 years has an orange label and cap unlike the vaccine for adults, which is packaged with a purple label and cap.

Is the vaccine for children the same vaccine as the one for adults? (updated November 10, 2021)
  • Yes, but the vaccine authorized for children ages 5 to 11 uses a much smaller dose than those for children 12 years and older.
  • Like the vaccine for older children and adults, it is given in two doses. The second dose is given 21 days after the first dose.
Why should I get my child vaccinated? (updated November 10, 2021)
  • Vaccination may result in fewer disruptions to normal life (school and sports) when a COVID-19 exposure occurs. Quarantines for vaccinated individuals exposed to COVID-19 are shorter or not required, depending on the circumstances.
  • Vaccination can protect against serious COVID-19 illness, including hospitalization and death.
  • Children with certain underlying medical conditions, including CF, are at higher risk for severe illness than children without underlying medical conditions.
  • Although rare, SARS-CoV-2 can also cause multisystem inflammatory syndrome (MIS-C). Many children who have gotten MIS-C have been infected or exposed to SARS-CoV-2, the virus that causes COVID-19. Although it is potentially serious, most children who have gotten MIS-C have recovered with medical care. You can learn more on the CDC’s MIS-C page.

Booster Doses

What is a booster dose? (updated September 29, 2021)

A vaccine booster dose is an additional dose of a vaccine. It is recommended if the immune response produced by a vaccine decreases over time. A booster shot works to “boost” the immune system's ability to better fight the infection.

What COVID-19 vaccines are authorized for a booster dose? (updated October 27, 2021)

The FDA and CDC have authorized booster doses for all three vaccines for individuals who meet certain requirements.

Who is eligible for a booster dose? (updated December 1, 2021)

People ages 18 and older who received the Pfizer-BioNTech (COMIRNATY®) or Moderna vaccines are eligible for a booster dose 6 months after their second dose.

People who are 18 years and older and received the one-dose J&J vaccine are eligible for a booster dose 2 months after they received their vaccination.

We encourage all people with CF who qualify to consider receiving a booster.

What are the side effects of a booster dose? (updated September 29, 2021)

Common side effects of booster doses have been similar to those from initial vaccination, including pain at the injection site, fatigue, muscle aches, chills, and fever.

Vaccine manufacturers and public health officials will monitor side effects from booster doses.

If I am eligible, how do I get a booster shot? (updated September 29, 2021)

No prescription is needed to get an additional dose. You can text your zip code to 438829 (GET VAX, in Spanish at 822862) or visit vaccines.gov for a list of vaccine locations near you that provide the Pfizer-BioNTech vaccine.

Most people will be able to get a vaccine without paying out of pocket, including those who do not have health insurance.

My child is younger than 18. Can they receive a booster dose? (updated October 27, 2021)

Not at this time as there was not enough data to support a decision. Booster doses are authorized only for those 18 years or older.

  • The best way to protect someone who cannot receive a booster dose, or be vaccinated yet, is for all household members to get vaccinated, including booster shots, if they are eligible.
I have CF. Can people in my household also get a booster dose? (updated September 29, 2021)

Members of your household are eligible for a booster dose only if they were initially vaccinated with the Pfizer-BioNTech vaccine and meet the age, health, or job requirements listed above.

Fall and Winter Holidays

How can my family and I celebrate holidays safely this fall and winter? (updated October 27, 2021)
  • The CDC states that the best way to decrease COVID-19 risk is for everyone who is eligible to get vaccinated.
  • The CDC recommends delaying travel until you are fully vaccinated.
  • Wear a mask in public indoor settings, especially in areas in which COVID-19 is spreading quickly. Avoid crowded, poorly ventilated areas.
  • For gatherings that include people from more than one household and different parts of the country, additional precautions should be considered, such as avoiding crowded indoor spaces and taking a COVID-19 test before travel.
  • The best way to protect someone who cannot receive a booster dose, or be vaccinated yet, is for all household members to get vaccinated, including booster shots, if they are eligible.
  • People with weakened immune systems, including those who are post-transplant, may not be fully protected even if they are fully vaccinated. The best protection for immunocompromised individuals is to only spend time with fully vaccinated people, as well as avoiding large gatherings and wearing masks when out in public.
  • You can learn more about celebrating holidays more safely from the CDC.

COVID-19 Vaccines

CF Foundation Supports Vaccination

The CF Foundation encourages vaccination for all people with CF and their families who are eligible to receive one. All three 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 or concerns. We also encourage people who are immunocompromised and have received an mRNA vaccine (Pfizer-BioNTech or Moderna) to talk with their transplant or care team about getting an additional dose.

Before Getting Vaccinated

What vaccines are available for COVID-19? (updated November 10, 2021)
  • Three vaccines have been proven to be safe and effective and received U.S. Food and Drug Administration (FDA) emergency use authorization (EUA), one of which recently received full approval:
    • The Pfizer-BioNTech vaccine received an EUA from the FDA on October 29, 2021 to authorize the vaccine in children ages 5 to 11 years Emergency use authorization was already in place for children ages 12 –15.

    • Pfizer-BioNTech vaccine (COMIRNATY®) received full FDA approval for people ages 16 and older on Aug. 23, 2021.

    • People ages 18 and older have two additional choices and may receive the vaccine from Moderna or Johnson & Johnson (J&J) subsidiary Janssen, which received EUAs on Dec. 18, 2020 and Feb. 27, 2021, respectively.

  • People whose immune systems are compromised, such as those who have had a solid organ transplant, may receive all available vaccines. However, the EUAs for the Pfizer-BioNTech and Moderna vaccines were amended by the FDA on Aug. 12, 2021, to include a third dose as part of the initial vaccine series due to lower immune activity in these individualsLearn more about how vaccines are evaluated for use by the FDA here.
  • The CF Foundation strongly encourage children with CF to get vaccinated as soon as possible and talk to their care teams if they have questions or concerns.
Does the CF Foundation support vaccination? (updated August 18, 2021)

Yes, the CF Foundation supports vaccination for all people with CF and their families who are eligible to receive one. All three 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 or concerns. We also encourage people who are immunocompromised and have received an mRNA vaccine (Pfizer-BioNTech or Moderna) to talk with their transplant or care team about getting an additional dose.

Should people with CF get a third dose of the vaccine? (updated August 18, 2021)
  • No, not at this time. People with CF are generally not immunocompromised. Only those who meet the criteria addressed below should receive a third dose.
  • People with moderately to severely compromised immune systems, including people who are post-transplant, have not had as strong of an immune response following standard doses of the mRNA vaccines and are encouraged to get an additional dose.
  • The FDA and CDC are monitoring the data to determine if and when vaccine protection decreases. This information will help determine if and when a booster dose is needed for people without compromised immune systems.
Who is eligible for an additional vaccine? (updated August 18, 2021)

People eligible for an additional vaccine dose are those whose immune systems are moderately to severely compromised due to:

  • Taking immune-suppressing medication following transplant
  • Having certain types of cancer that weaken the immune system
  • Having HIV/AIDS
  • Having certain inherited immune disorders
  • Long-term use of medications that weaken the immune system
What vaccines are available for an additional dose? (updated August 18, 2021)
  • The FDA amended the EUAs to provide an additional dose of the Pfizer-BioNTech and Moderna vaccines -- the mRNA vaccines -- to those who are moderately to severely immunocompromised.
  • CDC recommends getting the third dose of the same mRNA vaccine that you initially had (either Pfizer or Moderna), but if not available, then you may receive the other one.
  • You can learn more from the CDC web site.
Is an additional dose available for the J&J vaccine? (updated August 18, 2021)

Not at this time. There was not sufficient information for the FDA to determine whether immunocompromised people would have an improved immune response from a second dose of the J&J vaccine, nor how safe a second dose may be. Research is ongoing to assess the safety and efficacy of a second dose of the J&J vaccine.

I had a transplant and the J&J vaccine. Can I get an additional shot of the Pfizer-BioNTech or Moderna vaccines? (updated August 18, 2021)

Additional doses were authorized only for people who initially received the Pfizer-BioNTech or Moderna vaccines. We encourage you to discuss any options you may have with your transplant team.

If I am eligible, how do I get an additional shot? (updated August 18, 2021)
  • You should get a third dose 28 days or more after you receive your second dose. No prescription is needed to get an additional dose. You will not need to show proof of a compromised immune system before getting a third dose, but you will need to sign a document that you are immunocompromised.
  • Most people will be able to get a vaccine without paying out of pocket, including those who do not have health insurance.
Can I go back to normal activities after I get an additional shot? (updated August 18, 2021)
  • We are still learning about how additional doses of the vaccines will work in individuals who have compromised immune systems. Although preliminary data is promising, more research is needed.
  • The CF Foundation recommends that individuals with a compromised immune system continue to take precautions to ensure they limit exposure to SARS-CoV-2, such as wearing a mask when away from home, physically distancing, and washing hands frequently.
What is the difference between a booster shot and an additional dose? (updated August 18, 2021)
  • The FDA authorized an additional dose of the vaccine for people who have not developed a strong enough immune response to a standard dose to provide protection from COVID-19.
  • Booster shots are recommended if the immune response produced by the vaccine decreased over time and the booster shot would then “boost” the immune system's ability to better fight the infection.
  • Booster shots for the general population may become necessary, but neither the FDA nor the CDC have made that determination at this time as they continue to monitor the data.
  • On August 16, Pfizer-BioNTech submitted data to the FDA as part of an application to receive authorization of a COVID-19 vaccine booster shot for the general population.
Can I choose which vaccine to get? (updated May 21, 2021)

As vaccine supplies have begun to match demand, people may be able to choose a vaccine site that offers their preferred vaccine.

Does the Foundation recommend one vaccine over the other? (updated March 1, 2021)

No, the Foundation does not recommend one vaccine over another. The Foundation supports the use of the authorized COVID-19 vaccines for people living with CF and strongly encourages that people with CF discuss how to get vaccinated with their care teams. The CF Foundation's has issued two statement in support of vaccination, one from February and one from March. 

When can I get vaccinated? (updated May 25, 2021)

People ages 18 and older are eligible to receive the Moderna and J&J COVID-19 vaccines. People ages 12 and older are eligible to receive the Pfizer-BioNTech vaccine. You can also text your zip code to 438829 (GET VAX, in Spanish at 822862) or visit vaccines.gov for a list of vaccine locations near you. You can also call 800-232-0233 to speak with someone who can help you find a vaccine site. Many local sites, including pharmacies, offer vaccinations without an appointment.

How will I know if a vaccine is safe and effective for me? (updated May 21, 2021)
  • You can discuss the known benefits and risks with your doctor or care team. They can review the safety data from clinical trials and real-world use, including the potential side effects, and discuss your personal circumstances, such as your health status, employment, school, or household situation. The authorized vaccines have had relatively few reports of adverse side effects.
  • Data from clinical trials of COVID-19 vaccines evaluated by the FDA indicate very high efficacy against symptomatic illness against illness that caused hospitalization and death, and these findings were consistent across groups including those at high risk.
  • All three trials were ethnically diverse. The percentages of Black participants ranged from 10% to 13%, and the percentage of Hispanic participants ranged from 13% to 28%.
  • All trials include data on people at high risk for severe illness, such as those with chronic but stable medical conditions, like high blood pressure, pulmonary disease, and diabetes. Based on these findings, there is no evidence to suggest that people with CF would respond differently from those included in the clinical trials.
  • Following the FDA authorization of a vaccine, the safety and efficacy data are reviewed by the CDC Advisory Committee on Immunization Practices (ACIP). This independent committee includes vaccine experts who use a rigorous method to assess the data. Learn more about this process further down this page under “What is the review and approval process for vaccines in the United States?
  • study released by the CDC in late May provides strong evidence that the Pfizer-BioNTech and Moderna vaccines are highly effective in preventing COVID-19 infections in real-world use. Results show that two or more weeks after the second dose, the risk of symptomatic COVID-19 was decreased by 94%.
Is the Johnson & Johnson vaccine safe? (updated April 27, 2021)
  • The CDC and FDA recommended resuming the use of the J&J vaccine after a brief suspension to investigate a very rare side effect among a small number of people who received the vaccine. After reviewing and discussing all available data, the agencies found the vaccine's known and potential benefits outweigh the known and potential risks.
  • The CDC and FDA stated they will continue to closely monitor outcomes and side effects associated with the vaccine.
  • You can find more information in this CDC statement. In addition, your care team can discuss any concerns you may have about receiving this vaccine.
How do the vaccines work? (updated May 21, 2021)
  • All COVID-19 vaccines work by causing the body to mount an immune response to SARS-CoV-2, the virus that causes COVID-19, although they accomplish it in different ways.
  • The Pfizer-BioNTech and Moderna vaccines are mRNA vaccines. They contain information that inserts instructions into your cells to make a protein from the virus. Your body then mounts an immune response to the protein that protects against COVID-19.
  • The J&J vaccine uses a weakened adenovirus to deliver a piece of SARS-CoV-2 DNA, which has instructions for the cells of the body to make a protein from the virus. The body mounts an immune response to the protein that protects against COVID-19. The weakened adenovirus does not cause illness.
  • You can read more about different kinds of vaccines on the CDC web site.
Which vaccine is most effective? (updated May 21, 2021)
  • It is difficult to directly compare clinical trial results of the vaccines with each other because they took place under different conditions. For example, the clinical trials of the Moderna and Pfizer-BioNTech vaccines took place early in the pandemic, while the J&J vaccine clinical trials took place after SARS-CoV-2 variants had emerged.
  • All three vaccines are considered highly effective against COVID-19, especially at preventing illness that leads to hospitalization and death.
Have people with CF been in clinical trials? (updated March 12, 2021)

Yes, people with CF have participated in vaccine clinical trials. Four people with CF participated in the J&J clinical trials. We are uncertain how many participated or what their experience was in the Pfizer-BioNTech and Moderna trials. However, 8% of people in the Pfizer-BioNTech clinical trials who received the vaccine and 5% of people in the Moderna trials who received the vaccine had chronic lung disease.

Where can I find more information about participating in a vaccine trial?

You can find more information about vaccine clinical trials by visiting:

Can I be vaccinated if I'm currently enrolled in a CF clinical trial?

People who are participating in a CF clinical trial should discuss getting the COVID-19 vaccine, and the timing of the vaccine, with the study doctor and/or research coordinator.

Do the authorized vaccines protect against new COVID-19 variants? (updated July 30, 2021)
  • There are several variants of SARS-CoV-2 in the U.S. Some variants, including the delta variant, spread more easily and may cause more severe illness.
  • Research continues to show that all vaccines are effective in preventing severe disease, hospitalization, and death due to COVID-19, regardless of the variant.
  • Because recent data has shown that it is possible for fully vaccinated people who have been infected with the delta variant to spread it to others, the CDC recommends that fully vaccinated people wear a mask indoors in certain circumstances, including in communities where COVID-19 is spreading quickly.
  • You can learn more about the COVID-19 variants from the CDC.
Do the vaccines interact with medications? Specifically, modulators like Trikafta®?

Although there is no data regarding interactions, there is no reason to believe that the vaccines will interact with CF medications, including CFTR modulators. We strongly encourage all people with CF to get vaccinated after discussing it with their care team.

Can you receive a COVID-19 vaccine at the same time as another vaccine like the flu vaccine or shingles vaccine? (updated May 21, 2021)

Yes, the CDC states that people can receive a COVID-19 vaccine at the time they receive other vaccines, such as influenza or shingles vaccines.

What if I have allergies to medications or food? Can I still get vaccinated? (updated May 21, 2021)

Talk to your doctor about what you can expect, when to seek medical attention if you experience a bad reaction, and if you have had an allergic reaction to vaccinations or injectable therapy in the past. Learn more about precautions associated with severe allergic reactions here.

The CDC recommends people who have had severe allergic reactions that are unrelated to vaccines or injectable medications get vaccinated. These include allergic reactions to:

  • Food
  • Pets
  • Venom
  • Environmental or latex allergies

People with a history of allergies to oral medications or who have a family history of severe allergic reactions can also be vaccinated.

I have CF. Can family members in my household also get vaccinated to keep me safe? (updated May 25, 2021)

Yes. People ages 18 and older are eligible to receive the Moderna and J&J COVID-19 vaccines. People ages 12 and older are eligible to receive the Pfizer-BioNTech vaccine. You can also text your zip code to 438829 (GET VAX, in Spanish at 822862) or visit vaccines.gov for a list of vaccine locations near you. You can also call 800-232-0233 to speak with someone who can help you find a vaccine site. Many local sites, including pharmacies, offer vaccinations without an appointment.

I had COVID-19. Should I still get vaccinated?

A person who had COVID-19 and recovered may be at risk of becoming infected again. Past infections may bring about some natural immunity, however, it is not known how protective natural immunity is or how long that protection would last. A vaccine may offer longer-term protection from COVID-19 than natural immunity. Your CF care team can help you determine if getting a vaccine is right for you.

Can those who are pregnant get vaccinated? (updated August 18, 2021)
  • Yes, people who are pregnant or breastfeeding are encouraged to get vaccinated because they are at increased risk for severe illness if they get COVID-19. People who are pregnant are encouraged to discuss the benefits and risks with their doctor or care team. To learn more about COVID-19 vaccines and pregnancy before discussing it with your doctor, visit the CDC website.
  • There are several safety monitoring systems in place following the COVID-19 vaccines and pregnant people. Evidence is growing that shows the vaccines are safe and effective for pregnant people. The American College of Obstetricians and Gynecologists (ACOG) has issued a statement recommending that all pregnant individuals be vaccinated against COVID-19. You can read the statement on the ACOG web site.
I had an organ transplant. Should I get vaccinated? (updated August 18, 2021)
  • Yes, the CF Foundation continues to recommend that transplant recipients get vaccinated against COVID-19.
  • We are learning that people who are post-transplant remain at increased risk for COVID-19 because they have a lower immune response to the vaccines than people who have not had a transplant. For this reason, the FDA authorized a third dose of the Pfizer-BioNTech and Moderna vaccines for people whose immune systems are compromised, including transplant recipients.
  • People who have had a transplant should continue to take precautions against infection, including physical distancing, washing hands frequently, wearing a mask, and avoiding crowds.
  • It is also important for all people who live in the same household as someone who has had a transplant become fully vaccinated and take the same precautions to avoid exposure to COVID-19.
  • The International Society for Heart and Lung Transplantation (ISHLT) has issued a statement encouraging vaccination in patients who have had a transplant. You can read the entire statement on the ISHLT website.
  • If you have had a transplant, we encourage you to talk with your transplant team or CF care team about a third vaccine dose.
I am waiting for an organ transplant. Should I get vaccinated?

Transplant candidates should be vaccinated while they are waiting for transplant. In general, vaccines are recommended more than two weeks before a transplant. If you receive the vaccine before transplant, both doses should be completed before transplant. The International Society for Heart and Lung Transplantation (ISHLT) has issued a statement encouraging vaccination in patients with advanced heart or lung disease. You can read the entire statement on the ISHLT website.

Until I get vaccinated, how can I stay safe?

There are many things you can do to protect your health and that of your household until a vaccine is available and, more importantly, until infection rates are reduced. Everyone -- even those who have been vaccinated -- should continue doing what they can to protect their health and the health of everyone around them. Learn more about prevention and safety here.

How much will a vaccine cost?

Most people will be able to get a vaccine 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).

What should I know before scheduling my vaccination? (updated May 25, 2021)

Actions you can take to help make scheduling a vaccination easier include:

  1. Be prepared. Gather your personal details, like medical insurance information and documentation that indicates your CF diagnosis before getting started.
  2. Don't limit yourself to only one place. Check for available appointments from several trusted sources, like your local health department, hospitals, pharmacies. In addition, you can text your zip code to 438829 (GET VAX, in Spanish at 822862) or visit vaccines.gov for a list of vaccine locations near you. You can also call 800-232-0233 to speak with someone who can help you find a vaccine site. Many local sites, including pharmacies, offer vaccinations without an appointment.

What to Expect When Getting Vaccinated

How many shots will it take for me to be fully vaccinated? (updated March 19, 2021)

A person is considered fully vaccinated two weeks after receiving:

  • The first of Johnson & Johnson's single-dose vaccine
  • The second shot of Pfizer-BioNTech's or Moderna's vaccines 
Timing between shots for the Pfizer-BioNTech vaccine is 3 weeks and 1 month for the Moderna vaccine. It is important that you receive both shots of the same vaccine to be fully protected

 

What are the side effects?

Although side effects from the different vaccines may vary, those that have been commonly reported include pain at the injection site, fatigue, muscle aches, chills, and fever. These side effects usually go away within a few days and are a sign that your immune system is working. Talk to your doctor about what side effects you can expect after being vaccinated. Vaccine manufacturers and public health officials will continue to monitor side effects as the vaccines are given to the wider population.

What about severe allergic reactions? (updated May 3, 2021)
  • Severe allergic reactions to both vaccines are rare. However, if you have had a severe allergic reaction to a vaccine or injection in the past, ask your doctor if you should get vaccinated and what you can expect, including when to contact your care team or seek medical attention should you experience a bad reaction.
  • Individuals should be monitored for 15 minutes after receiving the vaccine. Those with a history of immediate allergic reaction should be monitored for 30 minutes after receiving a vaccine to ensure any adverse reaction is identified and addressed promptly. Learn more about precautions associated with severe allergic reactions here.

What to Expect Afterwards

How long will I be protected after I am vaccinated? (updated May 3, 2021)

Recent research showed that both the Pfizer-BioNTech and Moderna vaccines provide protection for at least six months after the second dose. More data are needed to determine how long the vaccine provides protection from SARS-CoV-2, the virus that causes COVID-19. The vaccine manufacturers and public health officials will continue to monitor vaccine recipients for several months to years following FDA approval. Over time, we will gain a better understanding of long-term immunity

Now that I have been fully vaccinated, should I continue to wear a mask in public spaces? (updated September 29, 2021)
  • The Cystic Fibrosis Foundation urges all people with CF and close members of their families to wear masks, regardless of vaccination status, to protect against transmission of  SARS-CoV-2, the virus that causes COVID-19. We believe that becoming fully vaccinated upon the advice of your care team along with masking is the best way to limit the risk of infection so people with CF have the best chance of staying healthy through the pandemic.
  • This is supported by the Centers for Disease Control and Prevention (CDC), which recommends that even fully vaccinated people who have weakened immune systems wear a mask. 
  • Additionally, the CDC recommends that people maximize protection by wearing masks indoors especially in areas where COVID-19 is spreading quickly, regardless of vaccination status. 
Can I go back to normal activities once I'm fully vaccinated? (updated July 30, 2021)

Masks have been found to be safe and effective at decreasing COVID-19 transmission. They protect the person wearing the mask and those they come in contact with. Unvaccinated people should continue to wear masks indoors and in public areas in which physical distancing is difficult, such as at the grocery store or the pharmacy -- especially in areas that have been highly affected by COVID-19. Vaccinated people should still continue to wear masks in certain circumstances, including:

  • When they are required by local regulations or businesses.
  • In communities where the virus is spreading rapidly.
  • In health care settings, long-term care facilities like nursing homes, and in jails or other detention facilities.
  • If they have received a lung transplant or have another health condition that is associated with a lower immune response to vaccines, if a member of their household has a weakened immune system, if they are at increased risk for severe disease, or if a member of their household is not fully vaccinated.
Masks are required for all people on planes, buses, trains, and other forms of public transportation, regardless of vaccination status. If you have questions about what precautions are appropriate given your unique circumstance, you should speak with your care team.

 

What about people who have had a transplant and are fully vaccinated? (updated May 21, 2021)
  • We are still learning, but the evidence to date shows that transplant recipients have a much lower immune response to vaccines than people who have not had a transplant.
  • Even after vaccination, people who have received a transplant remain at higher risk for COVID-19 and need to continue taking precautions, such as physically distancing, wearing a mask, washing hands frequently, and avoiding crowds.
  • It is also important for all people who live in the same household as someone who has had a transplant become fully vaccinated as soon as they are able.
  • If you are post-transplant, we encourage you to talk to your CF care team or transplant team about your individual circumstances.
  • More information about the latest transplant vaccine effectiveness data can be found here. Watch a recording of a conversation in which CF Foundation for Vice President of Clinical Affairs, Albert Faro, MD, interprets recent research about vaccines in transplant recipients on the CF Foundation's YouTube channel.
Can people who have been vaccinated still infect people even though they are not ill? (updated July 30, 2021)

People who have been fully vaccinated and become infected with the virus may still transmit the virus, but public health officials are monitoring it closely and have found evidence to indicate that vaccines reduce the risk of transmission.

Will the CF Foundation track COVID-19 vaccine data in the CF Foundation Patient Registry?

Yes, we are tracking people with CF who have received a COVID-19 vaccine, the dates of vaccinations, and the vaccine's manufacturer. The Registry are also recording people with CF who were not vaccinated and note the reason why. Information from the Registry has already been used to analyze data regarding people with CF and COVID-19.

How does the U.S. government review vaccines and what is the Foundation doing to help? What is the review and approval process for vaccines in the United States?
  • In the United States, every licensed and recommended vaccine goes through rigorous testing before it is approved by the FDA and subsequently recommended for use by the CDC. These approvals are rooted in science, data, and independent assessment that is designed to protect the public health and safety.
  • As part of the FDA review process, an independent advisory panel of experts, the Vaccines and Related Biological Products Advisory Committee, or VRBPAC, will play a key role in assessing pre-clinical and clinical trial data for each COVID-19 vaccine candidate and providing recommendations as to whether a vaccine is safe and efficacious and ready to be considered by the FDA. To learn more about the VRBPAC, please go here.
  • Once a vaccine is approved for use by the FDA, the Advisory Committee on Immunization Practices, or ACIP, will make recommendations to the CDC on appropriate use, allocation, and distribution for each COVID-19 vaccine. The ACIP is an independent advisory panel responsible for providing guidance and recommendations to the CDC on vaccines. To learn more about the ACIP and their role in making recommendations for vaccine use, please go here.
  • Additionally, public health and regulatory bodies continuously monitor vaccines once approved to understand how real-world experience may impact recommendations on appropriate use and the long-term impacts on public health. The United States has numerous programs that monitor vaccine safety after a new vaccine becomes available, and each program provides different types of data for researchers to analyze a given vaccine's safety and efficacy. You can read more here.
What is the CF Foundation doing to support the CF community related to the COVID-19 vaccine(s)? (updated May 3, 2021)

 

As public health authorities authorize and distribute COVID-19 vaccines, we continue to engage with federal and state decision-makers about the dangers of respiratory infections for individuals with CF and the needs of the CF community. The Foundation believes people with CF need a vaccine distribution strategy that is aggressive, predictable, and adheres to science and medicine. Read more about the Foundation's work here.

School

Is it safe for my child to attend school in person? (updated July 30, 2021)
  • In person learning is vital for children's social development and emotional well-being. The CDC recommends that all children attend school in person as long as safety measures are in place. This includes the recommendation that all people in K-12 schools -- including teachers, staff, children, and visitors -- wear masks, even if they are vaccinated. Parents of children with CF who are not yet old enough to receive the COVID-19 vaccine should speak with their care teams about their individual circumstances.
  • The option of distance learning should be available for all people whose health makes the risk of attending school in person too great.
My child’s school district is not requiring masks. Should I still send them to school? (updated August 18, 2021)
  • Until children younger than 12 have access to authorized vaccines, precautions like masking remain a vital tool in preventing infection and spread of the virus; both the CDC and American Academy of Pediatrics recommend universal masking in schools at this time, with the goal of keeping students safe and physically present in school.
  • Your care team can help you decide whether it's safe to return to in-person learning based on your child's individual circumstances. Families who have made the decision not to return their student to in-person learning because of the risk to their health are encouraged to ask for alternative accommodations, such as remote learning.
  • The Foundation issued a statement supporting both the Centers for Disease Control and Prevention and the American Academy of Pediatrics recommendations that teachers, staff, children, and visitors at K-12 schools wear masks during the COVID-19 pandemic, regardless of whether they have been vaccinated. Read our statement of support here.
  • If you have concerns about protections from COVID-19 at your school, contact CF Foundation Compass who can connect you with experts to help you navigate legal questions around school accommodations.
My state has banned mask mandates. What can I do? (updated August 6, 2021)
  • The Foundation is aware of several states that have moved to prohibit school districts from requiring masks. We are monitoring this issue closely and weighing in to urge impacted states to provide all K-12 schools with the necessary flexibility to protect students and staff during the ongoing COVID-19 pandemic.
  • Additionally, we continue to urge school districts to offer remote learning during the 2021-2022 academic year as an accommodation for students at higher risk for severe illness from the virus, including those with CF.
  • Compass can help families facing these bans by connecting them to resources to discuss school accommodations. If you are interested in learning more about the status of the Foundation's advocacy in your state, we encourage you to speak with a member of our advocacy team by emailing publicpolicy@cff.org.
Are there any helpful resources for parents considering what to do about school?

Resources that can help you in weighing the risks and benefits of school include:

  • The CDC, which offers resources to help families decide between in-person and virtual learning for their children.
  • Your care team, who can help you consider the risks and benefits of in-person or distance learning.
  • CF clinicians discussed school reopening as well as answered audience questions during a virtual event in July. You can view the recording on the Foundation's YouTube channel.
  • You can learn more about independent education plans (IEPs) and 504 plans on cff.org. CF Foundation Compass case managers can help connect you to resources to understand your legal rights and how to navigate the process.
  • The administrator or counselor at your child's school can discuss the school's plan for reducing the risk of COVID-19 and actions they will take if there are confirmed COVID-19 cases at the school.
What should I do if there is a confirmed case of COVID-19 at my child's school?

The CDC advises that any school with a confirmed case of COVID-19 may need to close for 2-5 days.

Temporarily closing the school would allow local health officials to help the school determine appropriate next steps, including disinfecting the facility and identifying people who may have come into contact with those who were infected.

Flexibility may be important if your child's school has to close because of a positive test. This may result in the school closing and students resuming learning from home.

If you have a prepared a 504 plan for your child, make sure it includes wording that gives you the flexibility to change your decision.

We recommend speaking with your child's care team to discuss the best decision for your child. You can prepare for the discussion by considering the following factors:

  • Your child's health
  • If there has been a confirmed COVID-19 case at your child's school
  • How common COVID-19 is in your community
  • The COVID-19 plan at your child's school to address infections
Talk to the administrators at your child's school plan to ensure that your child has the option of virtual learning if there is a positive test for COVID-19 at the school.

 

What are 504 plans and IEPs? When could I request one and would they even help?
  • Parents of children with CF can request an individualized education plan (IEP) or a 504 plan for their child from their school.
  • IEPs are generally used for students whose health conditions affect their ability to learn.
  • 504 plans are used for students who need accommodations to access their education.
  • Some schools will recommend 504 plans since CF does not cognitively affect a student's ability to learn; however, many schools will recommend an IEP since missing school due to an exacerbation affects the student's ability to learn.
  • For IEPs and 504 plans, you will need to request an evaluation from the school.
  • Ask your CF care center for a sample letter that your doctor can send to the school, explaining how CF affects your child and identifying accommodations that may help.
  • Once a student qualifies for services, the school will hold a team meeting with the family to make an IEP or 504 plan.
  • CF Foundation Compass case managers can help connect you to resources to understand your legal rights and how to navigate the process.
Is it safe for my child to participate in extracurricular activities?

Like other decisions during this pandemic, the decision to allow your child to participate in extracurricular activities is based on personal circumstances. We recommend you speak with your child's care team to discuss the best decision for your child. You can prepare for the discussion by considering the following factors:

  • Your child's health
  • How common COVID-19 is in your community
  • Is the activity taking place outside and/or with a smaller group?
  • The plan the facility has for decreasing the risk of COVID-19 spread, such as physical distancing, mask use, or disinfecting equipment or the facilities.
  • If the activity's risk is lower (singles tennis) or higher (wrestling)
What should I (or my child) do about college in the fall?
  • Distance learning should be an option for all students with CF, including those attending colleges and universities. Although colleges will take precautions to limit the spread of COVID-19, students with CF may find the risk too great to attend in person.
  • We recommend speaking with your care team to discuss the best decision for you (or your child) based on your specific circumstances.
  • We believe that high-risk college students who decide not to attend classes in person -- either before or during the school term -- and who do not have a distance-learning option, should not forfeit their tuition dollars or be subject to other financial penalties. You can contact CF Foundation Compass if you have questions about your rights or need support in communicating with your college or university.
Additional Resources

Watch as Ginger Birnbaum, mother of a child with cystic fibrosis, leads a discussion about school reopening and people with CF with experts Clement Ren, MD, Professor of Clinical Pediatrics and CF Center Director, Riley Hospital for Children and Indiana University School of Medicine, Sarah Strong, School Liaison Specialist, Cincinnati Children's Hospital, Sue Sullivan, Senior Director, Head of Community Partnerships at the CF Foundation.

CF and COVID-19

Are people with CF at increased risk for COVID-19 infection?

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

The CDC has issued guidelines for people who are at higher risk.

  • Stay at home as much as possible to further reduce your risk of being exposed.
  • Stock up on supplies.
  • Take everyday precautions to keep space between yourself and others.
  • When you go out in public, keep away from others who are sick, limit close contact, and wash your hands often. 
  • Avoid crowds.
  • Avoid cruise travel and non-essential air travel.
Recognizing that CF is a complex disease and affects each person living with it differently, we recommend you speak with your care team directly with specific questions about your personal health and risk factors, and continue to check the CDC website for complete guidelines and the most up-to-date information.
Am I at increased risk for COVID-19 because I had a transplant?
  • Since people who are post-transplant must take medication that suppresses their immune systems to prevent organ rejection, they are at greater risk of serious illness from COVID-19.
  • Talk to your transplant team about precautions you can take beyond what the CDC recommends.
Is there any way to tell the difference between normal CF symptoms and COVID-19 symptoms?
  • According to the CDC, the most common symptoms of COVID-19 are fever, cough, shortness of breath, and muscle aches.
  • Call your CF care team as soon as possible if you notice any change in your cough, increased shortness of breath, or muscle aches, or if you develop high fevers, very diminished appetite, vomiting or diarrhea, or loss of sense of smell and taste. 
What has been the impact of COVID-19 infection on people with CF?
  • Overall, we are encouraged that people with CF infected with COVID-19 are doing better than we initially expected.
  • Many people with CF and COVID-19 have been able to manage their treatment at home.
  • A recent international analysis of 181 people with CF showed that two groups of people may be at increased risk for severe illness, which includes hospitalization and death:
    • People whose best FEV1 was less than 40 percent predicted in the year before they were infected (advanced lung disease)
    • People who have had a lung transplant
  • All people with CF should continue to be very careful to reduce exposure to COVID-19, especially if they have advanced lung disease or have had a transplant.
  • We encourage people with CF to work closely with their care teams to assess their personal risk as well as follow CDC guidelines for those at high-risk for severe illness.
  • We are gathering information through the CF Foundation Patient Data Registry to understand any long-term impacts.
How has COVID-19 affected children with CF?
  • A recent international analysis of 105 children with cystic fibrosis diagnosed with COVID-19 found that COVID-19 in children with CF was usually associated with mild illness in those who did not already have severe lung disease.
  • The findings are highly encouraging for children with CF, but all people with CF should continue to take extreme caution to avoid exposure to COVID-19. As always, people with CF are encouraged to work closely with their care teams to assess their personal risk during this time.
  • The full case report, including detailed demographic data on the cases included in the study, can be viewed online.
  • In addition to tracking outcomes through the CF Foundation Patient Registry and participating in coordinated global efforts to understand the impact of COVID-19 on individuals with CF, the Foundation supports scientific research to further understand how SARS-CoV-2, the virus that causes COVID-19, works in CF cells.

Prevention and Safety

What precautions should people with CF be taking related to COVID-19? Is there anything I can do beyond handwashing to protect myself/my family?

People with CF and those close to them should continue taking precautions to keep themselves healthy and follow the CDC's guidance for those at higher risk.

Should I wear a mask? (updated July 30, 2021)
  • Masks have been found to be safe and effective at decreasing COVID-19 transmission. They protect the person wearing the mask and those they come in contact with.
  • Unvaccinated people should continue to wear masks indoors and in public areas in which physical distancing is difficult, such as at the grocery store or the pharmacy -- especially in areas that have been highly affected by COVID-19.
  • Vaccinated people should still continue to wear masks in certain circumstances, including:
    • When they are required by local regulations or businesses.
    • In communities where the virus is spreading rapidly.
    • In health care settings, long-term care facilities like nursing homes, and in jails or other detention facilities.
    • If they have received a lung transplant or have another health condition that is associated with a lower immune response to vaccines, if a member of their household has a weakened immune system, if they are at increased risk for severe disease, or if a member of their household is not fully vaccinated.
  • Masks are required for all people on planes, buses, trains, and other forms of public transportation, regardless of vaccination status. If you have questions about what precautions are appropriate given your unique circumstance, you should speak with your care team.
What kind of mask should I wear? (updated May 21, 2021)
  • The CDC states that different masks, such as cloth, surgical, disposable, and KN95 masks, can be effective in protecting a person from being infected with SAR-CoV-2, the virus that causes COVID-19.
  • The CDC has created a guide to masks where you can learn more.
  • Surgical masks and cloth masks are not N95 masks:
    • N95 masks are intended to help health workers reduce their exposure to the coronavirus virus from an infected person. N95 masks are not recommended for anyone other than health workers.
    • Surgical masks and cloth masks are intended to prevent the wearer from spreading the virus to others. The CDC notes that they may offer some protection for the wearer as well.
How should I wear my mask? (updated May 21, 2021)
  • The CDC recommends checking to see how well a mask fits, how well it filters the air, and how many layers it has. SARS-CoV-2, the virus that causes COVID-19, is spread mainly through respiratory droplets. A mask with more than one layer will help prevent your droplets from reaching others and those from others from reaching you.
  • The CDC recommends the following:
    • Make sure the mask fits snugly over the nose, mouth, and chin to prevent air from leaking around the edges of the mask
    • Use a nose wire, a mask fitter, or brace to prevent air from leaking around the edges of the mask
    • Wear a cloth mask with two or three layers or a disposable surgical mask underneath a cloth mask, which should push the edges of the inner mask against your face.
    • Adjust the fit by tying knots in the ear loops of a three-ply mask and tucking the extra material under the edges It's important to washcloth masks after wearing them, to keep them as germ-free as possible. The CDC provides instructions for washing cloth masks.
  • People with CF should continue to follow Cystic Fibrosis Foundation infection prevention and control guidelines, which recommend that people with CF wear a surgical mask in health care settings to reduce the risk of cross-infection from CF germs.
Are face shields as effective as cloth face coverings?

The CDC does not recommend using face shields instead of masks because face shields do not provide as much protection against respiratory droplets as masks.

Should we be taking chloroquine or hydroxychloroquine to prevent getting COVID-19?
  • Any prevention or treatment strategies for COVID-19 that involve the use of medicines should be discussed with your care team. However, clinical care guidelines for the treatment of COVID-19 that were recently published by the National Institutes of Health (NIH) found no medications that have been shown to prevent COVID-19.
  • Hydroxychloroquine in particular may be associated with severe side effects and should never be taken outside the supervision of a medical professional.
Can the Foundation provide masks, hand sanitizer, and/or gloves to care givers or members of the CF community?
  • The Foundation does not provide these supplies. Currently, there is a shortage of protective supplies across the country, including N95 facemasks, which should be saved for people who are caring for the sick, such as health care workers.
  • The best way to reduce your risk of infection is to follow the CDC guidance on ways to protect yourself.
I'm worried the person I live with could get infected. What should I do?
If you are concerned that someone you live with may risk infecting you at home because of their job, such as health care workers, or circumstances, there are steps you can take:
  • Discuss with your employer any alternative accommodations that may be possible, such as remote work or paid leave.
  • CF Foundation Compass case managers can help you determine if your or your family member's employer offers any paid family leave options.
  • For those who live with someone who does not work remotely, create a routine you can follow when arriving home to decrease the infection risk to others in the home, including:
    • Remove shoes outside
    • Shower immediately after arriving home
    • Disinfect objects you touched before washing your hands like door knobs
    • Disinfect personal objects like cell phones, keys, or earbuds
    • Place clothes worn outside the home in a separate container if you can't wash them immediately
The CDC provides some guidance on reducing the risk of infection when someone in the house is sick.
Is it safe for me/my loved one with CF to travel?
  • Traveling can increase your chances of becoming infected with COVID-19 or spreading it to others. 
  • You can be exposed to the virus that causes COVID-19 in the air and on surfaces in buildings, such as airports, bus and train stations, and rest stops. It may also be more difficult to keep a six-foot distance from other people in these environments.
  • Although traveling by car can help you avoid continuous contact with people who are unknown to you, you may face exposure from people and surfaces at rest stops, gas stations, convenience stores, and fast foot restaurants.
  • For travel inside the US, the CDC recommends considering:
    • Learning how widespread COVID-19 is in your local area or in any of the places you plan to visit. Please refer to the CDC and Johns Hopkins maps for the latest information on affected areas.
    • How you plan to travel and the mode of transportation, such as by car, bus, train, or RV.
  • The CDC recommends that people at higher risk for severe illness, including people with CF, take extra precautions when traveling.
What if I can't work remotely?
  • There are many jobs that make remote work difficult. We encourage you to discuss with your employer alternative accommodations that may be possible to distance yourself from others (at least six feet away) or ways to take additional precautions to reduce your risk of infection.
  • People with CF may be eligible for protections under the Americans with Disabilities Act (ADA), such as reasonable accommodations to perform the essential functions of their job.
  • If you have questions about this topic, please contact CF Foundation Compass. Our case managers can help you determine if your or your family member's employer offers any paid family leave options or can connect you with legal experts.
How can I protect myself at work?
  • Working remotely may decrease your risk of exposure because you will be less likely to encounter others outside your household. If you cannot work remotely, the level of risk in your workplace depends on several factors, including:
    • Your health
    • If you must work in close contact (within six feet) of others, especially for extended periods of time
    • The level of risk you are comfortable with.
  • In addition to infection prevention measures, such as wearing a cloth face covering and washing hands frequently for at least 20 seconds, remember that commonly used areas and devices, such as elevators, bathrooms, doors, break rooms, and surfaces, can be sources of infection.
How can I protect myself commuting to and from work?
  • Walking, biking, or driving alone are the safest ways to commute to and from work.
  • Commuting on buses or subways increases your risk of becoming infected with COVID-19 because passengers can be within six feet of each other for extended periods of time.
  • If you must use public transportation, wearing a cloth face covering, sitting as far from others as possible, and using hand sanitizer can decrease your risk of becoming exposed on public transportation.

CF Care

Clinic Visits

Is it safe for me/my loved one to continue going to clinic visits?
  • In areas that are highly affected by COVID-19, care centers are offering telehealth visits for routine care, connecting by phone or video to avoid unnecessary risk of exposure and pressure on their patients and families, in staff, and health care institutions. 
  • Care teams in areas that are reopening are gradually resuming in-person visits based on how common COVID-19 is in the local area, as well as recommendations by local and state public health agencies.
  • Different centers may take different approaches, but in the early stages of reopening, most care teams will work with you to help you determine if an in-person visit is recommended for you.
  • Care teams will also implement processes and procedures to reduce the risk of exposure to COVID-19.
How should we handle medical appointments that can't be avoided, such as blood draws?
  • Hospitals are using stricter infection control practices during the pandemic. Beyond regular precautions, like wearing a mask and practicing handwashing, your care team is the best source of information on how to minimize your risk of exposure to COVID-19 if you need to be seen for an appointment.
  • In some instances, you may be able to attend appointments virtually; and many labs have implemented strategies to decrease the risk of exposure to COVID-19, such as allowing patients to wait outside the lab until they receive a text message that notifies when it is time for their test.
Is it safe for me to take ibuprofen?
  • Currently, there is no evidence that ibuprofen increases the risk of developing serious complications or of acquiring the coronavirus that causes COVID-19.
  • People with CF -- including those on high-dose ibuprofen -- should contact their care team before stopping any of their prescribed medications for CF. There is no evidence to suggest patients should stop high-dose ibuprofen because of COVID-19 at this time. 
How is the Foundation helping to fund spirometers in support of telehealth?
  • With the rapid shift to telehealth visits for routine CF care, care teams have experienced challenges finding home spirometers for patients whose lung function requires close monitoring.
  • To meet this critical need, the Foundation has secured and is supplying home spirometers for care centers to make available to patients.
  • We have provided care teams with instructions for obtaining the devices. They will communicate directly with affected individuals and arrange shipment of the device to their home address.
  • Because the supply of home spirometers is limited, care teams are prioritizing which patients receive spirometers first based on their need.
  • We plan to expand this program over the next several months as more supply becomes available.

Clinical Trials

What should I do if I am currently participating in a clinical trial?

If you are participating in clinical research, please communicate with the research team about your study visits. Many studies are making changes which will allow you to stay in the study while also making your safety the top priority.

Testing

Should I get tested? (updated October 20, 2021)
  • The CDC recommends that you get tested if you have COVID-19 symptoms or have been in close contact with someone who has COVID-19. Close contact is being closer than six feet from someone else for a total of 15 minutes in any 24-hour period.
  • If you are fully vaccinated, you should be tested 3 to 5 days after being exposed to someone who has COVID-19 or is believed to have COVID-19.
  • If you are unvaccinated and have been unable to physically distance from others because of travel, attending a large social or mass gathering, or being in a crowded or poorly ventilated indoor area, you should be tested.
  • Some care teams may ask you to be tested for COVID-19 before routine visits with your CF care team as well as other medical appointments and certain procedures, such as pulmonary function tests.
How do I get tested for COVID-19? (updated October 20, 2021)
  • Testing is available at many locations, including hospitals and clinics, labs, and pharmacies. Visit your local or state health department's website to find a testing location near you.
  • At-home testing is also available.
What kind of testing is available? (updated October 20, 2021)
  • There are two kinds of tests: viral and antibody testing.
  • A viral test tells you if you currently have COVID-19.
  • An antibody test can tell you if you were infected with SARS-CoV-2, the virus that causes COVID-19, or possibly a related coronavirus in the past.
  • The FDA has authorized several at-home tests that are available online or at local drugstores and do not require a prescription. With some tests, results can be returned in less than an hour. Other tests require you to send a sample to a lab and results come in days.
  • Your care team can help you decide what type of testing is right for you.
  • You also can learn more about self-testing for COVID-19 from the CDC.
What is viral testing? (updated October 20, 2021)

A viral test analyzes a sample taken from your respiratory system, such as a sample from where your nose meets your throat using a cotton swab in your nose.

Types of viral testing include:

  • Molecular, or PCR, testing. This is considered the most accurate form of viral testing. It tests the sample for genetic material from the virus. Results can take less than 24 hours to several days if it has to be sent to a lab.
  • Antigen (also called rapid testing). This type of test, which measures a type of protein for the virus, is considered less accurate than molecular testing but the results are much faster, usually within an hour. Many schools use this type of test to screen staff and students.
  • Other viral tests (multiplex assay) that can test for COVID-19 and other infections, such as the flu.

 

What is antibody testing? (updated October 20, 2021)
  • In an antibody test, a small amount of blood is analyzed to see if antibodies are present. The results take from two to three days.
  • Antibodies are proteins that help fight infections. They develop a 10 to 12 days after infection from the SARS-CoV-2, the virus that causes COVID-19, or a related coronavirus.
What do test results mean? (October 20, 2021)
  • If the results of a viral test are positive, it means you currently have COVID-19.
  • Notify your care team and let them know your results.
  • If you test negative for COVID-19 via a viral test, it means you do not currently have COVID-19.
  • Although a negative viral test means you do not currently have COVID-19, it does not mean you will not get it in the future. It is important to maintain preventive measures, such as physical distancing and frequent handwashing, to protect yourself from becoming exposed to COVID-19.
  • If antibodies are found, it indicates that a person has been infected with SARS-CoV-2 in the past.
Is testing covered by insurance? (October 20, 2021)
  • Under the Families First Coronavirus Response Act, testing is free to anyone in the U.S. Contact your local or state health department to find testing locations.
  • Certain tests, such as at-home tests, may not be covered and may require an out-of-pocket payment.

Treatment

Are there any treatments for COVID-19? (updated October 20, 2021)
  • Prevention through vaccination remains the best course of action for all people, including people with CF. The three vaccines available to people in the U.S. have proven effective at preventing SARS-CoV-2 infection. In vaccinated people who develop COVID-19, the vaccines are extremely effective at preventing hospitalizations and deaths.
  • People who experience mild symptoms recover from COVID-19 at home with rest and over-the counter-medications, such as acetaminophen or ibuprofen when they experience symptoms like fever and body aches.
  • For people at increased risk of developing severe COVID-19, including people with CF and those who have had an organ transplant, outpatient monoclonal antibody treatment may be appropriate. You can learn more about monoclonal antibodies from the U.S. Department of Health and Human Services.
  • For those who've been exposed to the virus and are at high risk for severe illness, the FDA has issued EUA for two treatments, casirivimab and imdevimab (REGEN-COV) and bamlanivimab and etesevimab.
  • Those experiencing severe symptoms that warrant hospitalization may receive supportive measures, such as intravenous fluids, supplemental oxygen, and respiratory support devices, as needed. In addition, treatment with corticosteroids and remdesivir may be used for those hospitalized with COVID-19 who require oxygen.
  • Numerous other treatments for COVID-19 are in development.
Are routine CF medications helpful for treating COVID-19?
  • We are not aware of any research that suggests medications used to treat CF are effective in treating COVID-19. Clinical care guidelines for the treatment of COVID-19 that were recently published by the NIH do not reference any CF-specific therapies.
  • There have been some small studies testing the potential of azithromycin, an antibiotic that is widely used to treat different types of infections and is regularly prescribed to people with CF. This research is still in its early stages. 

Daily Life

My state is reopening. Is it safe for me/my loved one to resume normal activities?
  • States, cities, and local governments may have different plans for resuming normal activities, which they may continue to adjust them based on local transmission. You can check with your state or local health agencies to find out the plan in your area. 
  • People with CF and others in their households should carefully consider the level of risk presented by normal activities.
  • The more people you come in contact with, particularly face to face, and the longer you are in close contact with them (within six feet), the higher your risk of getting COVID-19. This is especially true if you are in contact with individuals who are not wearing a mask. The CDC has a detailed explanation on how masks impact transmission
    • There are different levels of risk:
      • Being outside, with only a few people who are six or more feet apart is considered relatively low risk.
      • Being inside, where it is difficult to keep a six-foot distance and air is re-circulating, increases the risk.
      • Being in an environment where the people around you are not wearing cloth face coverings increases your risk in any situation.
      • Your care team can help you decide if re-engaging in normal activities is the right decision for you based on:
        • Your health
        • How common the spread of COVID-19 is in your area
        • The risk and potential benefits associated with a particular activity
        • How comfortable you are with that risk
  • Need help deciding what activities are safe? Download this risk-assessment grid.
Can I go on regular errands, like shopping for groceries?

The CDC recommends limiting errands to those you cannot avoid for essential goods and services, such as groceries or medications.

The CDC also recommends:

  • Limiting your exposure to COVID-19 by ordering online for delivery or using curbside pickup. 
  • Limit your exposure to COVID-19 by shopping in stores, such as grocery stores or pharmacies, if you have to.
  • For shopping in store:
    • Ask if the store has special hours for people at higher risk for severe illness
    • Wear a cloth face covering
    • Use hand sanitizer after leaving the store
    • Wash your hands for at least 20 seconds after you get home

 

Should I stockpile medicines or supplies?
  • The CDC recommends you have access to several weeks of medicines and supplies in case you need to stay home for prolonged periods of time.
  • We are not currently aware of any CF medication shortages caused by COVID-19.
  • We are actively monitoring the Food and Drug Administration's list of medication and supply shortages and are in contact with the manufacturers of many widely used CF medicines.
Can people go outside during the COVID-19 outbreak?

Yes! In fact, we encourage people with CF to get fresh air by going for walks or exercising while staying at least six feet apart from others. We recommend avoiding playground equipment at this time.

Is it safe for me/my loved on with CF to go to work?
  • Working remotely may decrease your risk to exposure because you will be less likely to encounter others outside your household.
  • For those who do have to work outside of the home, the CDC has guidance on reducing your risk of infection.
  • The CDC also has information for employers on how to reduce the risk of exposure to COVID-19 in workplaces.
  • As local areas begin to reopen, people with CF and their care teams should work together to weigh the risks and benefits of returning to work and make the decision that is right for them.
This situation has left my family and me overwhelmed. What can I do?
  • Many people with CF are experiencing increased stress, anxiety, or depression because of the uncertainty and isolation around COVID-19, particularly because of the higher risk. People who are feeling overwhelmed are encouraged to reach out to their care teams for help.
  • The CDC provides information on coping with the fear and anxiety caused by the COVID-19 outbreak.
  • The CF Foundation has developed resources on general emotional wellness and resilience. You can also view recordings of virtual events focused on coping with the emotional aspects of COVID-19 on our YouTube channel, including:
    • Navigating Uncertainty, a discussion with mental health professionals that focuses on tools for navigating uncertainty, managing dilemmas, and “living in the gray.”
    • Emotional Wellness and COVID-19, a discussion of active approaches to maintaining your well-being and resources for anyone coping with stress and anxiety.

CF Foundation Policy & Advocacy Support

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 patients and families:

  • Expand paid Family and Medical Leave to ensure people at risk for severe complications from COVID-19 are not forced to work if it will jeopardize their health, or the health of their loved ones.
Access to care and coverage support:
  • Increase federal Medicaid funding to ensure the program remains available to eligible people with CF during the pandemic
  • Expand access to telehealth services
  • Premium support for COBRA insurance
  • Expanded access to medication and medical supplies during the pandemic
  • Ensure regional treatment allocation plans do not discriminate people with chronic conditions 
Ongoing research and development support:
  • Increase in federal research funding
  • Continued support of proposals to incentivize antimicrobial research and development
  • Provide expertise on vaccine development and its impact on rare disease populations 
  • We continue to monitor policy proposals, and the unique issues people with CF are facing during the outbreak. For an in-depth look at our advocacy efforts surrounding COVID-19, you can read more here.

 

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