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COVID-19 Frequently Asked Questions for the Pulmonary Hypertension Community (updated 5/11/2020)

The COVID-19 outbreak is causing significant concern worldwide and especially within the Pulmonary Hypertension (PH) community. The Pulmonary Hypertension Association (PHA) has prepared these Frequently Asked Questions (FAQ) to address many of the questions and concerns that we have heard from the PH community regarding COVID-19. This includes information from Centers for Disease Control and Prevention (CDC) on the risk to people with underlying health conditions and the steps you can take to protect yourself and your family. Please call your PH physician or care provider if youare feeling unwell or have further questions.

Q: Are people with PH at greater risk for COVID-19 virus infection?
A: According to the CDC, there is no evidence to suggest that people with underlying health conditions are at higher risk of becoming infected with the COVID-19 virus. However, there is evidence that people with underlying health conditions, including all types of heart and lung diseases, have a higher risk of developing serious illness from the COVID-19 virus if they become infected. It is currently unknown whether the risk of COVID-19 virus infection is higher in PH patients compared to the general population. Researchers and clinicians are gathering information through PHA-accredited PH
Care Centers to understand the impact of COVID-19 on PH patients.

Q: What safety precautions should I take as a PH patient?
A: These are challenging times and require some rethinking of approaches to daily living. Individuals should consult their PH health care teams with specific questions about personal health risks and safety.

The CDC has provided guidelines for people who are at higher risk. PHA recommends that you check the CDC website frequently for the most current guidelines. The CDC guidelines include:

  • Stay at home as much as possible to reduce your risk of being exposed.
  • Avoid crowds.
  • Keep space between yourself and others. It is recommended to keep at least 6 feet apart from others. Avoid large crowds or heavy traffic areas.
  • Limit close contact to other people who are sick.
  • Frequently wash your hands with soap for at least 20 seconds or use hand sanitizer with at least 60% alcohol content.
  • Avoid touching your face, especially your eyes, mouth and nose.
  • Avoid all non-essential travel, even short trips.
  • The CDC currently recommends covering your mouth and nose with a cloth face cover when around others. Everyone should wear a face covering in public settings such as the grocery store or pharmacy.
  • Cloth face coverings should not be used on young children under 2 years old and anyone who has trouble breathing or is unconscious, incapacitated or otherwise unable to remove the mask without assistance.
  • The recommended face coverings are not surgical masks or N-95 respirators which must continue to be reserved for health care workers and other first responders.
  • The CDC provides instructions on how to wear face coverings, how to make homemade cloth face covers, how to safely remove used face covers and how to safely clean cloth face covers.
  • Continue to keep 6 feet between you and others. Cloth face coverings are not a substitute for social distancing.

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

Q: Is it safe for me to go to work or my children to go to school?
A: It is recommended that children with PH avoid crowds (fewer than 10 people). A child who is sick with a fever, cough, sore throat or difficulty breathing should not attend school. Distance learning or other remote options should be discussed with teachers and school administrators. Some school districts or local or state governments may decide to close schools. When schools are closed, children should avoid contact with other children outside of their households and avoid public parks and playground equipment. Monitor your local news for more information about any school district closings. Federal guidance on school responsibility for students with disabilities during COVID-19 can be found here.

It is recommended that adults with PH who are employed try to work remotely whenever possible. PH patients may be eligible for protections under the Americans with Disabilities Act (ADA), such as reasonable accommodations to perform the essential functions of their job. Find out more information about working with PH, including information about your rights, here.

Refer to your state or local government for specific restrictions. Specific questions about your personal risk factors and related actions should be directed to your care team who can help you determine if courses of action.

Q: Am I at risk of getting COVID-19 from food or from mail?
A: Coronaviruses are thought to spread from person to person by respiratory droplets. COVID-19 is a new disease and we are still learning about how it spreads. Currently, there is no evidence to suggest that COVID-19 can be transmitted through food. For general food safety before preparing or eating food, wash your hands with soap and water for at least 20 seconds.

Although the virus can survive for short periods of time on some surfaces, health experts consider it unlikely that the virus spreads through mail or packaging products. While it may be possible to get COVID-19 by touching an object like a packaging container with the virus on it and then touching your mouth, nose, or eyes, this is not thought to be the main way that coronaviruses spread. It is good practice to wash your hands after receiving deliveries and collecting mail and to routinely clean frequently touched surfaces.

More information on what is known about how COVID-19 may spread can be found here on the CDC website.

Q: What should I do if I am worried that someone I live with may be at risk of being infected due to their work or other circumstances (e.g. spouse works in a medical setting or in a profession in frequent contact with other)?

A: To reduce the risk of spreading the virus, a household member who may be at risk of being infected may want to change clothes before entering the house, keep potentially contaminated shoes outside, sanitize hands before entering the house, wash potentially contaminated clothes in hot water, and shower before interacting with other household members.

The CDC provides guidance on reducing the risk of infection when someone in the house is sick. This includes having the sick member of your household stay in a separate room away from others in your home and use a separate bathroom if possible. Do not share linens/towels and food. Discuss with your PH health care team your concern and whether they recommend additional precautions.

Q: Is it safe for me or my family member to have an in-person visit with my doctor or schedule non-emergency medical procedures?
A: PH patients should continue with their regular daily care regimens per instructions by their PH health care team.

Routine PH clinic visits or non-emergency doctor’s visits can be conducted by telemedicine approaches (telephone, videoconferencing etc.) or postponed whenever possible to avoid unnecessary risk of exposure to COVID-19.

If you go to a hospital or care facility outside of where your PH health care team is located, have the health care providers reach out to your PH health care team for guidance and recommendations. Bring all your PH medicines and supplies with you.

Please consult your PH health care team for specific details prior to arriving for a scheduled visit, and ask whether a telemedicine visit is appropriate.

Q: What should I do if I am currently participating in a clinical trial?
A: If you are participating in clinical research, please contact the research team about your study visits. While some research studies are temporarily pausing new patient enrollment, many clinical trials are making changes that will allow you to stay in the study while limiting in-person visits and/or relying on telemedicine visits.

Q: How do I know if my breathing issues are due to PH or COVID-19?
A: Symptoms of COVID-19 may be difficult to distinguish from your PH and from other viral infections, especially during cold and flu season. The current symptoms of COVID-19 as reported by the CDC may include fever, cough, shortness of breath or difficulty breathing, chills, repeated shaking with chills, muscle pain, headache, sore throat and/or new loss of taste or smell. Some of these symptoms may be present as a result of PH and warning signals may
be a worsening of symptoms. Children may have similar symptoms to adults but more mild illness. You also do not have to be sick or have symptoms to transmit spread the virus.

Leaving your home may place you at a greater risk of COVID-19 exposure and may put others at risk. If you have symptoms of COVID-19 and are considering visiting a clinic, urgent care or emergency room for testing, please contact your PH health care team first to see if they will see you. Some doctors’ offices are not doing in-person visits during the COVID-19 pandemic unless it is an emergency. Telemedicine options with a health care team by video/phone may be a possibility. COVID-19 specific testing sites and stand-alone respiratory clinics have also open in certain locations to evaluate nonurgently ill individual who may have COVID-19. Your health care team will be able to work with you on how to proceed.

A list of emergency warning signs of COVID-19 can be found on the CDC website. Emergency warning signs include difficulty breathing, shortness of breath, severe chest pain, and blue lips. If you have these symptoms, please contact your doctor or EMS immediately.

Q: Are there treatments available for COVID-19?
A: There are currently no antiviral medications recommended or licensed by the FDA for COVID-19. There is no evidence that PH medications provide a protective or curative benefit for COVID-19. Care includes managing symptoms and any complications. Pharmaceutical companies and scientists are
actively working in this area and hopefully there will be treatment options in the future.

As with any non-prescription, over-the-counter medications, there is a high potential for interactions with PH medications or for these agents to have a direct effect on the heart or lungs. Do not take herbal supplements, high amounts of vitamin supplements, or any “antiviral cures” without first consulting your PH care team. Herbal therapies should be viewed as drugs and potentially harmful.

Currently, the best way to lessen the impact of COVID-19 is to slow the spread of the virus to others. This will ensure that our healthcare system is not too overwhelmed and allow researchers time to develop vaccines or treatments for the infection. If you are sick with COVID-19, you want to stay home and away from others until you have no fever for 72 hours (without the use of fever reducing medicine) and at least seven days have passed since you first had symptoms. Additional information can be found on the CDC website.

Q: Should I worry about running out of medicine or supplies?
A: The CDC recommends that you maintain enough medicine and supplies for several weeks in case you need to stay home for prolonged periods of time. Currently there is no indication that there will be any interruption for PAH prescriptions and refills. PHA is not aware of any manufacturing disruptions of PH medication caused by COVID-19. Current information of the impact of COVID-19 on access to PH therapies, supplies, oxygen, and lab tests can be found here.

There may be shortages throughout the United States of some supplies and other medications. FDA’s drug shortage database may be queried for a specific medication for current and resolved drug shortages.

Certain PH medications may require blood and/or urine tests to be run to refill your prescription. If you are concerned about going to the hospital to have these tests, but you are short on medication, contact your PH care provider and/or specialty pharmacy. Other medications may require home visits by the specialty pharmacy. Most have halted these home visits for now, but again, speak to your healthcare provider and specialty pharmacy about any
changes in services.

PHA will continue to monitor the availability of PAH medications and supplies during the COVID-19 outbreak.

Q: COVID-19 has caused a lot of anxiety for me and my family. What can I do?
A: PHA is here to help! The “Living with PH” section of PHA Classroom provides resources to learn about
coping, diet and nutrition, and exercise to help manage stress.

You may also experience a sense of loneliness or isolation due to social distancing, and PHA encourage you to use its many platforms to connect with other patients. Connect with another patient or caregiver now at PHAssociation.org/support, call 800-748-7274 or download an overview of PHA’s
virtual support resources. CDC provides information on coping with the fear and anxiety caused by the COVID-19 outbreak.

Our understanding about COVID-19 is continually evolving. It is important to maintain regular contact with the CDC website, PHA website and reliable news organizations and state health departments. Social media may be overwhelming at this time so please use good judgment with anything you read or hear.

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If you missed PHA’s "Preparing for a #Telemedicine Appointment" virtual town hall with cardiologist John Ryan and nurse practitioner Jennalyn Mayeux, you can watch the recorded online discussion here: ow.ly/v63150zN34I #PHAConnects ... See MoreSee Less

If you missed PHA’s Preparing for a #Telemedicine Appointment virtual town hall with cardiologist John Ryan and nurse practitioner Jennalyn Mayeux, you can watch the recorded online discussion here: http://ow.ly/v63150zN34I #PHAConnects

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Thank you for having this teleconference call with regard to telemedicine. I learned so much and have a teleconference appt on Monday so I am able to get ready for it. Very informative!

Join us NOW for our Preparing for a Telemedicine Appointment virtual town hall! ow.ly/fy2150zMUf5 #PHAConnects ... See MoreSee Less

Join us NOW for our Preparing for a Telemedicine Appointment virtual town hall! http://ow.ly/fy2150zMUf5 #PHAConnects

We're one hour away until our Preparing for a Telemedicine Appointment virtual town hall at 3 p.m. EDT! Make the most out of your #telemedicine visits by registering now: ow.ly/fy2150zMUf5 #PHAConnects ... See MoreSee Less

Were one hour away until our Preparing for a Telemedicine Appointment virtual town hall at 3 p.m. EDT! Make the most out of your #telemedicine visits by registering now: http://ow.ly/fy2150zMUf5 #PHAConnects

Need help navigating your online doctor visits? Check out PHA’s telemedicine worksheet to learn how to prepare and make the most out of your telemedicine appointments. ow.ly/97PB50zSUEq
And tune in tomorrow, May 29 at 3 p.m. EDT, for our Preparing for a Telemedicine Appointment virtual town hall. Register now: ow.ly/ZP9U50zSUEo #PHAConnects
... See MoreSee Less

Need help navigating your online doctor visits? Check out PHA’s telemedicine worksheet to learn how to prepare and make the most out of your telemedicine appointments. http://ow.ly/97PB50zSUEq
And tune in tomorrow, May 29 at 3 p.m. EDT, for our Preparing for a Telemedicine Appointment virtual town hall. Register now: http://ow.ly/ZP9U50zSUEo #PHAConnects