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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.
COVID-19 Vaccines
Watch as Melanie Abdelnour, adult with cystic fibrosis, leads a discussion about vaccines and people with CF with experts 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. Este video también está disponible en español.
Three vaccines have received U.S. Food and Drug Administration (FDA) emergency use authorization:
- A vaccine from Pfizer-BioNTech, authorized on Dec. 11, 2020
- A vaccine from Moderna, authorized on Dec. 18, 2020
- A vaccine from Janssen, a subsidiary of Johnson & Johnson (J&J), authorized on Feb. 27, 2021 (*NOTE: Out of an abundance of caution, the FDA has recommended a pause in use of this vaccine as the agency reviews data involving six reported U.S. cases of a rare and severe type of blood clot in individuals after receiving the vaccine. Please see the FDA's statement for further information.)
Learn more about how vaccines are evaluated for use by the FDA here.
Because supplies of authorized vaccines continue to be limited, you will likely only have one option when scheduling an appointment.
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. Read the Foundation's statements.
- Because the supply of authorized vaccines is limited, they are being distributed in phases. The ACIP recommendations priority access to COVID-19 vaccines for people with high-risk medical conditions before the general public, including those with CF. Some states have started offering vaccines to all individuals 16 and up, and more states are expected to offer vaccines to all those 16 and older as the supply continues to increase.
- 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 CDC as well as state and local authorities. Learn more about the CDC's prioritization process here.
- For the latest information on the vaccine rollout in your state visit the National Academy for State Health Policy (NASHP) resource that outlines state vaccine allocation plans.
- 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 vaccine advocacy here.
- 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 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 were consistent across groups including those at high risk.
- All three trials were ethnically diverse. The percentages of participants who were Black 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 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?”
- A study released by the CDC in late March 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 2 or more weeks after the second dose the risk of infection was decreased by 90%, including COVID-19 that does not cause symptoms.
- All COVID-19 vaccines work by causing the body to create 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 insert instructions into your cells. The instructions causes cells to make a protein from the virus. Your body then creates an immune response to the protein.
- The Janssen vaccine uses a weakened adenovirus to deliver a piece of SARS-CoV-2 DNA, which has instructions that cause the body to make a protein from the virus. This causes the body to create an immune response to the protein. The weakened adenovirus does not cause illness.
- You can read more about different kinds of vaccines on the CDC web site.
- 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 Janssen vaccine took place after SARS-CoV-2 variants had emerged, which the Pfizer-BioNTech did not.
- All three vaccines are considered highly effective against COVID-19, especially at preventing illness that causes hospitalization and death.
Yes, people with CF have participated in vaccine clinical trials. Four people with CF participated in the Janssen 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.
You can find more information about vaccine clinical trials by visiting:
Before getting a vaccine, 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.
- Multiple variants of SARS-CoV-2, the virus that causes COVID-19, which were initially detected in Brazil, South Africa, the United Kingdom, and the United States, appear to spread more easily than other variants.
- Vaccine manufacturers are performing laboratory tests of the existing vaccines to determine if they are effective against the variants.
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.
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.
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.
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. Vaccine appointments are opening up to the general public as supply increases.
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.
- The Pfizer-BioNTech vaccine is authorized for people ages 16 and older
- Clinical trials for the Pfizer-BioNTech and Moderna vaccines are underway in children as young as 6 months. Initial information from a Phase 3 clinical trial of the Pfizer-BioNTech vaccine in children aged 12 to 15 showed it was highly effective. The companies plan to submit these data to the FDA in the coming weeks to request expansion of the Emergency Use Authorization (EUA).
- Data from trials in children younger than 12 are expected later in 2021. Janssen has stated it intends to begin clinical trials of its vaccine in children under 18 but has not announced specific timing for those trials.
Pregnant people with COVID-19 are at increased risk for severe illness. Individuals who are pregnant can get vaccinated and are encouraged to discuss the benefits and risks with their doctor or care team. Pfizer-BioNTech has begun clinical trials to study the safety and effectiveness of the COVID-19 vaccine in individuals who are pregnant as well as in babies from birth until 6 months. Moderna has begun a patient registry to track individuals who are pregnant who receive the vaccine. Janssen plans to begin clinical trials to study the safety and effectiveness of the COVID-19 vaccine in individuals who are pregnant. 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.
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.
- Yes, the CF Foundation continues to recommend that transplant recipients get vaccinated. Although 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, being vaccinated against COVID-19 is helpful. 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. Read more about the National Vaccine Research Study for Transplant Recipients and watch our video explaining the study and its results.
- 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 and take the same precautions to avoid exposure.
- 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.
- If you have had-a transplant, we encourage you to talk to your CF care team or transplant team about your individual circumstances.
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.
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.
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).
Here are three tips that can help make scheduling a vaccination easier:
- Be prepared. Gather your personal details, like medical insurance information and documentation that indicates your CF diagnosis before getting started.
- Don't limit yourself to only one place. Check for available appointments from several trusted sources, like your local health department, hospitals, pharmacies, or VaccineFinder that are giving vaccinations.
- Sign up for alerts. Many state and local governments, hospitals and pharmacies have websites where you can enter an email or phone number to have them notify you when appointments become available.
More data are needed to determine how long the vaccine provides protection from SARS-CoV-2. 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.
- Based on growing evidence that people who are fully vaccinated are less likely to spread COVID-19, the CDC has recommended that fully vaccinated people can:
- Visit with other fully vaccinated people indoors without wearing masks or physical distancing
- Visit with unvaccinated people from a single household who are at low risk for severe COVID-19 illness indoors without wearing masks or physically distancing
- Not quarantine themselves or get tested for COVID-19 after they have been exposed to SARS-CoV-2, if they have no COVID-19 symptoms
- Fully vaccinated people should still wear masks, physically distance, avoid crowds and areas with poor ventilation when:
- In public
- Visiting unvaccinated people who are at high risk for severe COVID-19 illness or who have an unvaccinated household member who is at high risk for severe COVID-19 illness
- Visiting unvaccinated people from more than one household
- You can read more about what the CDC recommends for those who have been fully vaccinated on the CDC web site.
- We are still learning, but the evidence to date shows that people who are post-transplant 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 vice president of clinical affairs, Albert Faro, MD, interprets recent research about vaccines in transplant recipients on the CF Foundation's YouTube channel.
Although individuals who have been vaccinated may still transmit the virus, public health officials are monitoring this closely and have found evidence to indicate that vaccines may reduce the risk of transmission. In the meantime, you should continue to maintain physical distancing, handwashing, and wearing a mask, even after being vaccinated.
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.
- 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.
As public health authorities authorize and distribute 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.
- 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.
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.
- 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.
- 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.
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)
- 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.
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.
- 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.
- 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.
- 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.
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.
- 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.
- 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.
- 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.
- 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.