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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


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.

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.

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

  • People who received the Pfizer-BioNTech (COMIRNATY®) or Moderna vaccines are eligible for a booster dose 6 months after their second dose and if they are:

    • Ages 65 years and older.
    • Ages 18 and older who live in a long-term care facility, or have an underlying medical condition that puts them at high risk for severe illness, such as CF.
    • Ages 18 and older who have jobs that increase their risk of exposure to, or transmission of, SARS-CoV-2.
  • 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.
  • 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.
  • 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.
  • 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.

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.

  • 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:

    • People ages 16 and older may receive the Pfizer-BioNTech vaccine, now known as Comirnaty, which received full FDA approval on Aug. 23, 2021.
    • People ages 12 to 15 years may also receive the Pfizer-BioNTech vaccine, which received EUA from the FDA on May 10, 2021. 
    • People ages 18 and older may receive the vaccine manufactured by Moderna and Johnson & Johnson 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 be provided as a third dose. Learn more about how vaccines are evaluated for use by the FDA here.

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.

  • 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.
  • 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
  • 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.

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.

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.

  • 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.
  • 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.
  • 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.

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

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. 

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.

  • 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?”
  • A 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%.
  • 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.
  • 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.
  • 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 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.

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.

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

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.

  • 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.

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.

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.

  • 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.

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.

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 12 and older.
  • Clinical trials for the Pfizer-BioNTech and Moderna vaccines are underway in children as young as 6 months.
  • Data from trials in children younger than 12 are expected later in 2021.
  • J&J has stated it intends to begin clinical trials of its vaccine in children under 18 but has not announced specific timing for those trials.
  • 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.
  • 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 web site.
  • If you have had a transplant, we encourage you to talk with your transplant team or CF care team about a third vaccine dose.

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 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).

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.

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.

  • 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. 
  • 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 in 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.
  • 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.

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.

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 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.

  • 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.
  • 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.
  • 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 [email protected]

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.