COVID-19 Community Questions and Answers

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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.

Introduction

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Updated January 21, 2021
 
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.

COVID-19 Vaccines

Watch as Melanie Abdelnour, adult with cystic fibrosis, leads a discussion about vaccines and people with CF with experts o  Christian Merlo, CF Center Associate Director and Associate Professor of Medicine & Epidemiology, Pulmonary Care, Johns Hopkins University and Mary Dwight, SVP and Chief Policy & Advocacy Officer and Al Faro, VP of Clinical Affairs at the CF Foundation.

Before Getting Vaccinated

What vaccines have been approved for COVID-19?

  • Two vaccines have received U.S. Food and Drug Administration (FDA) authorization. The first, from Pfizer, was authorized on Dec. 11. The second, from Moderna, was authorized on Dec. 18. Submissions for additional vaccines are anticipated in early 2021. Learn more about how a vaccine is evaluated for use by the FDA here. 

Can I choose which vaccine to get?

  • Because supplies of authorized vaccines are limited, you will likely only have one option when a vaccine becomes available. That option, along with all other vaccines, must meet the same, strict criteria for safety and efficacy before it can be authorized by the FDA and offered to the public.

When can I get vaccinated?

  • Because the supply of authorized vaccines is limited, they are being distributed in phases. People who are at greatest risk for exposure to the virus, including those working in health care settings or people living in congregate settings, like long-term care facilities, are being vaccinated first. Next will be those considered frontline essential workers and people age 75 and older. This group will be followed by people age 65 and older and those with certain medical conditions that put them at high risk of developing severe COVID-19 illness.
  • People with CF (age 16 and older), should consult their doctor to determine if they meet the criteria for this high-risk group as defined by their state authorities. Vaccine distribution is determined by the Centers for Disease Control and Prevention (CDC) as well as state and local authorities. Learn more about the CDC's prioritization process here.

How will I know if a vaccine is safe and effective for me?

  • To help you decide whether to get vaccinated, you can discuss the known benefits and risks with your doctor or care team. They can review the findings from clinical trials, including the potential side effects, and discuss your personal circumstances, such as your employment, school, or household situation.
  • Data from clinical trials of COVID-19 vaccines evaluated by the FDA indicate very high efficacy against symptomatic illness and were consistent across groups including those at high risk. Both the Pfizer and Moderna vaccines were shown in these trials to have over 90% efficacy in preventing symptomatic COVID-19 infection. The trials were ethnically diverse, including about 10% Black and 28% Hispanic participants, and 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 are reviewed by an independent CDC Advisory Committee on Immunization Practices (ACIP). This committee includes vaccine experts who use a rigorous method designed to protect the health and safety of the public. Learn more about this process further down this page under “What is the review and approval process for vaccines in the United States?” 

Have people with CF been in clinical trials?

  • Yes, people with CF have participated in vaccine clinical trials, although we are uncertain how many participated or what their experience was in the trials. However, 8% of people in the Pfizer 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?

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

  • Yes, people who are participating in a CF clinical trial can be vaccinated and continue participating in the trial.

Do the authorized vaccines protect against new COVID-19 variants?

  • Based on information about the COVID-19 variants from the United Kingdom and South Africa, it is believed that the authorized vaccines will protect people against these new known variants.

Does the Foundation recommend one vaccine over the other?

  • No, 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. Read more about the Foundation's statement.

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?

  • The CDC recommends that people receive a COVID-19 vaccine alone at least 14 days before or after receiving any other vaccines, such as influenza or shingles vaccines.

What if I have allergies to medications or food? Can I still get vaccinated?

  • 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.
  • 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.

I have CF. Can family members in my household also get vaccinated to keep me safe?

  • The limited supply of vaccines will be reserved for people who are at greatest risk for exposure to the virus as well as those at greatest risk of severe COVID-19 illness. If members of your household meet the criteria due to their job, age, or health condition, they may receive priority access for the vaccine. Others will need to wait until more doses are available. 

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.

When can children get vaccinated?

  • The Pfizer vaccine is authorized for people ages 16 and older. Clinical trials for the Pfizer and Moderna vaccines are currently underway in children as young as 12. Data from those trials are expected later in 2021. Authorization for use of any vaccine for children younger than 12 would also require clinical trials to show that they are safe and protect against COVID-19. The FDA may authorize emergency use of the vaccines in children once the results of clinical trials in children show that they are safe and protect children from developing COVID-19. Neither Pfizer nor Moderna has announced the timing for any clinical trials in children younger than 12.

Can those who are pregnant get vaccinated?

  • Individuals who are pregnant can get vaccinated and are encouraged to discuss the benefits and risks with their doctor or care team. The authorized vaccines have not yet been tested in pregnant people, although both Pfizer and Moderna have agreed to include those who are pregnant in future studies. In addition, the American College of Obstetricians and Gynecologists (ACOG) has issued a statement recommending individuals who are pregnant have the option to be vaccinated. You can read the statement on the ACOG web site. To learn more about COVID-19 vaccines and pregnancy before discussing it with your doctor, visit the CDC web site.

Can you get the vaccine if you are breastfeeding?

  • Although individuals who are breastfeeding were not included in clinical trials of the authorized vaccines, the vaccines are believed to be safe for breastfeeding infants. However, more information will need to be gathered over time. If you are breastfeeding we encourage you to discuss the benefits and risks being vaccinated with their health care provider. The American College of Obstetricians and Gynecologists (ACOG) has issued a statement recommending that people who are breastfeeding have the option of being vaccinated. You can read the statement on the ACOG web site.

I had an organ transplant. Should I get vaccinated?

  • Little is known about how the vaccine may affect people who take medication to suppress their immune system after having had a solid organ transplant, including the lungs, kidneys, and liver. The authorized vaccines did not include people who take these medications. However, the International Society for Heart and Lung Transplantation (ISHLT) has issued a statement encouraging vaccination in patients who have had a transplant when a vaccine is locally available. You can read the entire statement on the ISHLT web site. Your CF and transplant care teams can help you discuss the benefits and risks to determine if you should get vaccinated.
  • Because people who have had a transplant take medication to suppress their immune system, their immune systems may not produce as strong a response to the vaccine. People who have had a transplant should continue to take precautions against infection, including physical distancing, washing hands frequently, and wearing a face covering.

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 when a vaccine is locally available. You can read the entire statement on the ISHLT web site.

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 to Expect When Getting Vaccinated

Do I need both shots to be vaccinated?

  • Currently, the authorized vaccine and those expected to be reviewed by the FDA, require two shots. Timing between the shots does vary and should be reviewed with your doctor. It is important that you receive both shots of the same vaccine to fully benefit from the protection that the vaccine provides.

What are the side effects? 

  • Although side effects from the different vaccines may vary, those that have been commonly reported include pain where the shot is injected, 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?

  • 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 unless they have a history of immediate allergic reaction after a 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 get both shots? 

  • The long-term protection from the vaccines is currently unknown as more data are being collected. Vaccine recipients in these trials will continue to be monitored for several months to years following FDA approval. Over time, we will gain a better understanding of long-term immunity.

Do I still have to wear a mask, wash my hands, and keep physically distanced after I get vaccinated?

  • Yes, you should continue to follow precautions, such as physical distancing, washing hands frequently, and wearing a mask, even after you are vaccinated, until the infection rates remain low, and public health officials change their guidance.

Can people who have been vaccinated still infect people even though they are not ill?

  • The vaccines prevent people from getting COVID-19 with symptoms (also known as symptomatic disease). It is not yet known whether individuals who have been vaccinated can spread SARS-CoV-2, the virus that causes COVID-19. Public health officials will monitor this closely. In the meantime, you should continue to maintain physical distancing, handwashing, and wearing a mask, even after being vaccinated.

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

  • Yes, we will track people with CF who have received a COVID-19 vaccine, the dates of vaccinations, and the vaccine's manufacturer. The Registry will also record 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)?

  • As public health authorities discuss the approval and distribution of COVID-19 vaccines, we continue to engage federal and state decision-makers about the dangers of respiratory infections for individuals with CF and the needs of the CF community. We continue to call on decision-makers to ensure that all vaccine allocation plans provide prioritized access for people at increased risk of serious illness from COVID-19 infection. 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.
  • We also want to ensure that the CF community has access to information to help guide their decisions and protect their health during the pandemic. It is critical that pre-clinical and clinical trial data for any vaccine be shared transparently and in a timely manner, and that COVID-19 vaccines be affordable and accessible to every person who may receive it.

COVID-19 and the Holidays

How can my family and I celebrate holidays safely this fall and winter?

  • Decisions about whether you or your family should host or participate in holiday celebrations, including Hanukkah, Christmas, and New Year's, are personal and should be based on individual circumstances, what is happening in your community, and should follow guidance from your state or local health department.
  • Hosting or attending gatherings with people who do not live in your home, including extended family, friends, and strangers, can increase your risk of exposure to COVID-19. The safest way to celebrate the holidays is to have virtual gatherings or celebrate with people who live in your home.
  • The Centers for Disease Control and Prevention (CDC) recommends that people who are at high risk for serious illness from COVID-19, or who live with someone who is, should:
    • Avoid in-person gatherings if people who don't live with you are attending
    • Avoid large in-person gatherings
    • Attend gatherings that are lower risk
  • The CDC has outlined several factors that can affect how much risk a gathering may have, including:
    • How common COVID-19 is in your area and how fast it is spreading
    • If the gathering will be indoors or outdoors. Outdoor gatherings are lower risk than indoor gatherings
    • If the gathering will be indoors, how well or poorly ventilated it is. Well ventilated facilities are lower risk than poorly ventilated facilities.
    • How long the gathering will take place. Briefer gatherings carry lower risk than longer ones.
    • How many people will be attending. Fewer people attending is lower risk than more people attending.
    • If people attending are practicing preventive measures, such as wearing masks, maintaining physical distance (at least six feet apart), and washing hands regularly.
  • You can download the Risk Assessment Grid and use it with your care team to decide how much risk hosting or attending a holiday celebration may pose for you.
  • It can be difficult to say “No” to invitations to celebrate holidays in person. Share the linked animation to help family and friends understand if you have to say no to a holiday invitation.

COVID-19 and Flu

Do I still need to get a flu shot this year?

  • The flu vaccine is important to many people at higher risk for flu complications, including people with CF.
  • A flu shot decreases your chances of getting the flu. If you do get the flu, the flu vaccine can help your symptoms remain mild, which could help you miss fewer school or work days as well as possibly avoid hospitalization.
  • Many people at higher risk for severe complications from the flu also seem to be at higher risk of complications from COVID-19, making a flu shot especially important this year to avoid the flu or minimize its effects if you do get it.
  • Many employers offer free flu shots to their employees at work. Because many people are now working remotely, check with your employer to see if flu shots are are still covered if you get it somewhere else.

When should I get a flu shot?

  • The best time to get the flu shot is in September through October, but getting vaccinated in December or January is still helpful as flu season can last until spring.
  • It is best to get the flu shot early because it can take around two weeks after vaccination for the body to build up its immunity to protect itself against the flu virus.

How can I get a flu shot without increasing my risk of being exposed to COVID-19?

  • The Centers for Disease Control and Prevention (CDC) has issued recommendations for vaccinations during a pandemic, including:
    • Screening patients for COVID-19 as they arrive for their flu shot.
    • Requiring all people older than 2 years to wear a cloth face covering.
  • Many flu clinics are using methods to decrease the risk of getting COVID-19, such as touchless payment systems and drive-up flu shots.
  • In addition to frequent handwashing and physical distancing, steps you can take to lower your risk of COVID-19 exposure include contacting the flu clinic to ask what precautions they are taking to reduce the risk of exposure and times when the clinic is less crowded.

Can I get flu and COVID-19 at the same time?

  • It is possible to get both flu and COVID-19 at the same time, though there is not yet data on how common this may be, or whether co-infection with flu and COVID-19 is associated with more severe illness.
  • Many people at higher risk from severe complications from the flu also seem to be at higher risk of complications from COVID-19, making it especially important to protect your health with a flu shot this year.

Will a flu shot protect me from COVID-19?

  • The flu shot will not protect against COVID-19 because flu and COVID-19 are different viruses.
  • Many vaccines for COVID-19 are being studied. At this time the date when a vaccine will be available is unknown.

Does getting the flu shot increase my risk of getting COVID-19, or having serious complications if I do?

  • According to the CDC, there is no evidence that getting a flu vaccination increases your risk of being infected by the coronavirus that causes COVID-19.
  • The flu vaccine will not affect your immune system's ability to fight COVID-19.

School

With many schools reopening, should anyone in my household be in school if they, or someone else in our household, has CF?

  • While remote learning remains the safest option to avoid exposure to COVID-19, we recognize the decision to return to in-person learning is based on personal circumstances and what is happening in your community. Therefore, the option of distance learning should be available for all people whose health, or the health of someone in their household, may be put at risk by attending school in person. This includes people with CF, as well as parents and adults with CF and those who work in schools.
  • For many families, keeping their child out of school may not be logistically or financially possible. Some children may have specific social and emotional needs that may benefit from in-person learning. If you are considering in-person learning, we recommend that you speak with your or your child's care team to discuss the best decision for your family, and the steps you can take to reduce the risk for you or your child and other members of your household. These steps include maintaining physical distance (at least six feet), using face masks when around others, frequent handwashing, and avoiding large gatherings. Important factors to consider include how fast COVID-19 is spreading in your community, the health of the person with CF in your household, and the steps that your or your child's school are taking to reduce the risk of infection.
  • We recommend you communicate directly with your or your child's school to understand what preventative measures they will take and what considerations you or your child will receive. The American Academy of Pediatrics issued guidance for the reopening of primary and secondary schools that stressed the importance of accommodations for students and families who may be at increased risk for severe illness. This is new territory for schools and teachers. It's important to be an active advocate to ensure your family's needs are met.
  • Parents of children with CF can request an individualized education plan (IEP) or a 504 plan for their child from their school. Families and individuals who need help requesting an IEP or 504 plan, require additional support for distance learning, or who depend on school services, such as meals, can contact CF Foundation Compass. Our case managers can help put you in touch with resources on these topics.

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.

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?

  • Recent evidence has shown that some people may spread the coronavirus when they have no symptoms or before they develop significant symptoms, putting others around them at risk. As a result, the CDC recommends that the general public wear cloth face coverings 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.
  • These cloth face coverings are not N95 masks or surgical 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 homemade cloth face coverings are intended to prevent the wearer from spreading the virus to others. Surgical masks and face coverings have not been shown to protect the wearer from exposure to the coronavirus.
    • It's important to wash face coverings after wearing them, to keep them as germ-free as possible. The CDC provides instructions for washing face coverings.
  • 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 has found no evidence that face shields protect against infection.
  • Therefore, the CDC does not recommend using face shields for everyday activities or as a substitute for 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

How do I get tested for COVID-19? 

  • If you have symptoms of COVID-19 (fever, cough, shortness of breath), contact your doctor. Your doctor may recommend you be tested, and the CDC recommends doctors work with local and state health departments to coordinate testing through public health laboratories. Testing requirements, availability, and procedures may vary by location.

What is the difference between viral testing and antibody testing?

  • Two kinds of test are available for COVID-19.
  • A viral test tells you if you currently have COVID-19.
  • An antibody test can tell you if you were infected with the novel coronavirus or possibly a related coronavirus in the past.

What is viral testing?

  • 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.
  • The presence of genetic material from the novel coronavirus indicates you currently have COVID-19.
  • Results can take from less than an hour to two days, depending on the type of test and where the sample will be analyzed.

What is antibody testing?

  • Antibodies are proteins that help fight infections. They develop a few weeks after infection from the novel coronavirus, the virus that causes COVID-19, or a related coronavirus.
  • 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.
  • If antibodies are found, it indicates that a person has been infected with the novel coronavirus in the past.

Which test should I get?

  • Your health care provider can advise you if you need to be tested and what kind of test you should get based on your circumstances.

Should I get tested?

  • Talk to your CF care team to discuss if testing is the right decision for you and what the results might mean.
  • Some care teams may ask you to be tested for COVID-19 before certain procedures, such as pulmonary function tests.
  • Because the novel coronavirus is so new, it is not yet known if a positive antibody test means that you are protected against becoming infected again.
  • In addition, only a few tests have been validated and found to be  accurate. Talk with your health care provider about any test results.

Is testing covered by insurance?

  • Under the Families First Coronavirus Response Act, health insurers are required to pay for testing free of charge if the test is ordered by a health care provider.
  • If the test is not ordered by a health care provider, the person tested must pay for the test out of pocket.

Does a positive antibody test mean I can't get COVID-19 and I can go back to normal life?

  • Because the novel coronavirus is so new, it is not yet known if a positive antibody test means that you are protected against becoming infected again.
  • Because of this uncertainty, it is important to talk with your care team about what a positive antibody test means and the risks and benefits of ending physical distancing.

What do viral test results mean?

  • 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.

Treatment

Are there any treatments for COVID-19?

  • There are no medications approved by the U.S. Food and Drug Administration (FDA) to prevent or treat COVID-19.
  • Most people recover from COVID-19 at home. For individuals who are hospitalized, care typically involves supportive measures such as intravenous fluids, supplemental oxygen, and mechanical ventilation, if necessary.
  • Treatment guidelines from the National Institutes of Health (NIH) recommend the antiviral medication remdesivir under certain circumstances for people who have been hospitalized severe COVID-19. Remdesivir is an investigational drug that has s been approved by the FDA for emergency use during the crisis.
  • Numerous drugs are in development as possible COVID-19 treatments. For more, see section on COVID-19 vaccines below.

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. 

What is the Foundation doing about COVID-19 triage plans?

  • As states and health systems prepared for potential surges in COVID-19 cases and intensified demand for intensive care, many are assessed how to prioritize services and equipment. This is referred to as triage planning.
  • First and foremost, the Foundation believes that all human life is valuable and that there should never be a circumstance where clinicians and caretakers are forced to consider unthinkable choices as they care for their patients.
  • While frontline health care workers need guidance during this crisis, it must be rooted in an accurate understanding of the patient's condition and prognosis. There is no evidence to suggest that people with cystic fibrosis cannot make a full recovery from COVID-19. Any policy that unnecessarily disadvantages people with cystic fibrosis due to outdated information and perceptions is unacceptable.
  • We are taking steps to educate policymakers in states and clinicians everywhere about how CF has changed. For more information, read our statement and principles on these policies and watch our recent “In a Minute” video. The community is also encouraged to take action and tell their lawmakers why the mere presence of cystic fibrosis should never disqualify someone from receiving lifesaving care.

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 my child to participate in extracurricular activities? (See answer above)

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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