May 15, 2020 – UPDATED*
PFF Coronavirus FAQs
To members of the pulmonary fibrosis community,
The Pulmonary Fibrosis Foundation has been closely monitoring the impact of coronavirus (COVID-19) and its spread throughout the United States. The number of patients affected by COVID-19 is increasing and our understanding of the effects of the virus is expanding. Based on experiences throughout the world and more recently in the U.S., people who have chronic medical issues may be at higher risk for serious illness from COVID-19, including those with pulmonary fibrosis. Public health officials recommend patients in the higher risk category should reduce the risk of being exposed to COVID-19.
To limit or prevent the spread of COVID-19, several recommendations have been suggested by the Centers for Disease Control (CDC) and include:
- Wash your hands often and with soap and water for at least 20 seconds, especially after going to the bathroom, before eating, and after blowing your nose, coughing, or sneezing.
- If soap and water are not readily available, use an alcohol-based hand sanitizer with at least 60% alcohol.
- Avoid close contact with people who are sick, distancing yourself by at least six feet.
- Avoid touching your eyes, nose and mouth.
- Stay at home if you are sick.
- Cover your cough and sneeze with a tissue, then throw the tissue in the trash.
- Clean and disinfect frequently touched objects and surfaces using a regular household cleaning spray or wipe.
- Wear a cloth face mask whenever you go out in public. This is especially important when social distancing measures are difficult to maintain (grocery store, pharmacy).
- The CDC provides guidance and a video on how to make your own face mask.
- Avoid non-essential travel
- Stay at home as much as possible
- Make sure your medications and supplies are adequate for a prolonged period of time
- Avoid crowds, including in places such as entertainment venues, sporting events, and places of worship
What are the symptoms of COVID-19 infection?
While symptoms may vary from few or no symptoms to severe breathing difficulty, more common symptoms include:
- Fever (Temperature over 100.4o F)
- Muscle pain or body aches
- Worsening cough
- Increased shortness of breath
- Repeated shaking with chills
- Sore throat
- New loss of taste or smell
What should I do if I think I have been infected with COVID-19?
If you get sick, stay home and call your pulmonologist. If he/she is not available, contact your primary care physician. Let your doctor know about your symptoms and that you may have COVID-19. Get medical attention immediately if you have:
- More difficulty breathing or shortness of breath
- Persistent pain or pressure in the chest
- New confusion or inability to arouse
- Bluish lips or face
- Increased oxygen requirement
Is it safe to travel for routine clinic visits?
The risk of traveling for clinic appointments is dependent upon the spread of COVID-19 in your area and the clinic in which you are seen. If you have concerns about traveling for a clinic appointment, you should discuss your specific situation and risks with your care center. There have been expansions in telemedicine during the COVID-19 pandemic, so you should talk to your doctor to determine if telehealth visits are an option. For the most up-to-date information on COVID-19, we recommend visiting the CDC Travel Information and CDC Coronavirus Disease 2019 webpage. If you have a fever or worsened cough and shortness of breath, you should alert your physician before arriving to a clinic/hospital for an appointment.
Should I continue traveling to my pulmonary rehabilitation appointments?
To avoid person-to-person transmission of COVID-19, patients should avoid crowds and stay at home as much as possible, especially if they are at higher risk for serious illness like those with PD. We recommend discussing the risks of participating in pulmonary rehab sessions with your pulmonary rehab team and physician. Home exercise programs may be developed in discussion with your pulmonary rehab center and physician during the COVID-19 pandemic. Several online resources are available to assist patients with exercise training. Discussing the use of these tools with your physician is recommended prior to initiating a home program.
Is it safe to have a pulmonary function test (PFT) or spirometry during the COVID-19 pandemic?
Patients have expressed concerns about whether they can become infected with COVID-19 by doing PFTs and spirometry testing. First and foremost, if you have a fever or increased cough and shortness of breath, you should alert your physician before arriving to a clinic/hospital for an appointment and/or testing. If you have concerns about routine testing, you should discuss any questions with the testing center and your physician. Some centers are canceling non-urgent, routine testing during the COVID-19 pandemic and opting to reschedule at a later date.
How can I prevent the virus from entering my portable oxygen concentrator (POC)?
The filters in POCs are not designed to filter viruses. Oxygen equipment should be cleaned, and filters replaced as specified by the manufacturer for routine maintenance. It is now more important than ever to clean and disinfect frequently touched objects, including POCs. Also, wash your hands frequently and adhere to social distancing guidelines.
I am enrolled in a clinical trial. Should I continue going to study appointments?
The FDA has issued new guidelines for clinical trial investigators in response to the COVID-19 outbreak. In addition, the FDA has developed information for patients who are enrolled in a clinical trial. If you are enrolled in a current trial, contact your trial center for information about any changes in visits. In order to avoid the risk of infection, appointments may need to be rescheduled. Ensuring your safety and limiting your potential exposure to the virus is a major concern.
I am a lung transplant recipient. How can I protect myself from infection?
Lung transplant recipients should use an abundance of caution. Stay near your home and with those you live until the outbreak subsides. If you take a walk around the block, be sure to practice social distancing (distance yourself from other people by six feet). Ask family members or neighbors for help with getting groceries and essentials. Follow the advice of your transplant team with regard to the use of a face mask. The CDC now recommends that everyone wear cloth face mask in public.
I am on the lung transplant waiting list. What should I do?
Patients on the waiting list for a lung transplant should maintain contact with their transplant center. According to the American Society of Transplantation, the risk of acquiring COVID-19 from an organ donor is low. However, transplant surgery may be delayed due to the threat of exposure in the hospital and the current strain on medical personnel and resources.
Can COVID-19 lead to pulmonary fibrosis?
Some news reports connecting PF with COVID-19 have been misleading. COVID-19 patients may develop acute respiratory distress syndrome (ARDS) which results in respiratory failure and the need for mechanical ventilation. In an attempt to heal from these overwhelming injuries, patients can lead to post-ARDS fibroproliferation or “fibrosis”. This could compound the injury which already exists in patients with PF and can be life threatening. We urge you to take the recommendations for avoiding COVID-19 infection seriously.
Will my anti-fibrotic treatment help prevent me from contracting COVID-19? Is the medication being used as a treatment for COVID-19?
While a tremendous amount of research and clinical trials for coronavirus treatments are underway, there is no clinical evidence that anti-fibrotic therapies approved to treat forms of pulmonary fibrosis are safe or effective in preventing and/or treating patients infected with coronavirus. If you're interested in learning more, the PFF's Drug Development Pipeline now includes therapeutic agents and devices that are in clinical trials to treat COVID-19.
Is hydroxychloroquine (alone or in combination with azithromycin) an effective treatment for COVID-19?
The Food and Drug Administration (FDA ) and the National Institutes of Health have cautioned against using the combination of hydroxychloroquine and azithromycin as a treatment for COVID-19 outside of clinical trials. There is insufficient clinical data to recommend using chloroquine or hydroxychloroquine for the treatment of COVID-19. In fact, preliminary data suggests that hydroxychloroquine alone has the potential to be harmful to COVID-19 patients. At this time, there are more than 25 clinical trials investigating hydroxychloroquine in the U.S.
Is remdesivir an approved treatment for COVID-19?
The FDA has issued emergency use authorization for remdesivir, an investigational antiviral drug, as a treatment for patients who are hospitalized and severely ill with COVID-19. Although information about the drug’s effectiveness is limited, it was shown in a clinical trial to shorten the time to recovery in some patients.
When will it be safe to go out again?
This is an important question that cannot be generalized to any one country, state, or region. Given the risks of COVID-19 to the PF community, a personal plan should be discussed with your pulmonologist before resuming public interactions. Individuals living with PF should continue to practice social distancing and minimize exposure to social settings where distancing may not be practical. Be sure to continue to use everyday preventive actions such as washing your hands, covering coughs and sneezes, avoiding touching your face, disinfecting frequently used items and surfaces, and wearing face coverings to reduce the spread of infection. If you are sick, contact your doctor.
The Pulmonary Fibrosis Foundation is monitoring the dynamic situation with COVID-19 and will address additional questions and future plans for PFF events and programs depending of the evolving situation throughout the United States.