COVID-19 Frequently Asked Questions for the Pulmonary Hypertension Community (updated 7/7/2020)

As communities adapt to the COVID-19 pandemic, the Pulmonary Hypertension Association (PHA) continues to address questions and concerns from the PH community about COVID-19. PHA provides the most recent Centers for Disease Control and Prevention (CDC) guidance to help the PH community make decisions about safety precautions and daily activities. Visit the CDC website and PHA’s COVID-19 page for current information. It is important to understand potential risks and take precautions to protect yourself and others because there is no way to ensure zero risk of transmission.

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 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 everyday safety precautions should I take to prevent infection?
A: People with PH and those close to them should continue taking precautions to keep themselves healthy and follow CDC guidelines for those at higher risk:

  • Stay at home as much as possible to reduce your risk of being exposed. The best way to prevent COVID-19 infection is to avoid being exposed to the coronavirus.
  • Keep space between yourself and others, and stay at least six feet apart from others. Look for physical barriers or visual reminders such as plexiglass screens, markings or arrows on the floor, or chair arrangements to help you keep your distance from others. Outdoor activities are safer than indoor activities because it is easier to maintain social distancing and stay six feet apart.
  • Avoid large crowds or heavy traffic areas.
  • Limit close contact with other people, especially those 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.
  • Cover your mouth and nose with a cloth face cover when in public and around others outside of your household. Continue to keep six feet between you and others while wearing a face cover. Cloth face covers aren’t a substitute for social distancing. The COVID-19 virus is thought to spread from person-to-person through respiratory droplets when an infected person sneezes, coughs or talks.
  • Monitor your health for COVID-19 symptoms, and take your temperature if symptoms develop. Stay home if you are sick. Follow CDC guidance if you have COVID-19 symptoms.

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 your concerns with your PH health care team and ask 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 teams. 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.

Consult your PH health care team for specific details before a scheduled visit, and ask whether a telemedicine visit is appropriate.

See the “PHA Connects: Preparing for a Telemedicine Appointment” video. Download the worksheet.

Q: What should I do if I am 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: What are the symptoms of COVID-19?
A: COVID-19 symptoms can include fever or chills, cough, shortness of breath or difficulty breathing, muscle or body aches, headache, new loss of taste or smell, sore throat, congestion or runny nose, nausea or vomiting and/or diarrhea, according to the CDC. Some may be a result of PH, and worsening of symptoms might be warning signs. You don’t have to be sick or have symptoms to spread the virus.

Emergency warning signs include difficulty breathing, shortness of breath, severe chest pain and blue lips, according to the CDC. This list isn’t all-inclusive. If you have these or other severe and concerning symptoms, call your doctor or EMS immediately. If you call 911 for a medical emergency, notify the operator that you think you might have COVID-19. If possible, cover your mouth and nose with a mask before medical help arrives.

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.

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.

Q: Are treatments available for COVID-19?
A: There currently are 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.

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: What risks are associated with medication for pulmonary arterial hypertension (PAH) or chronic thromboembolic pulmonary hypertension (CTEPH) when infected with the COVID-19 virus?

A: The use of PAH and CTEPH medications hasn’t been studied in PAH or CTEPH patients who contract COVID-19. Stopping or modifying your medication isn’t recommended because that could make your PAH or CTEPH worse. Talk about medication concerns with your PH health care team.

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, 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.

Q: How is COVID-19 affecting my community?
A: Johns Hopkins University, the CDC and state and local government entities provide updates on infection rates, stay-at-home orders and reopening.

Q: My city/state is reopening. What does that mean for people with PH?

A: The CDC has added additional guidance to consider as communities begin to reopen. That includes recommendations to stay safe while running errands, dining outside your home and participating in social activities. See the CDC’s updated frequently asked questions about COVID-19.

Remember: The more people you interact with, the closer the contact and the longer the time you interact, the greater your risk of COVID-19 virus infection. Some people might be infected but don’t have symptoms. It’s not known how often people without symptoms transmit the COVID-19 virus to others.

Talk with your PH health care teams about your health risks and safety measures you should take to take to protect yourself from COVID-19 infection.

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Join PHA NOW for our PHA Connects virtual town hall “Tips and Tricks to Maximize Your Energy” with nurse Rosemary Tsacoyianis and PH patients/PHA support group leaders Evette Britton, Lesley Shaffer and Amy Torgerson. http://ow.ly/CDbi50ANR1b. #PHAConnects

We’re an hour away from PHA Connects virtual town hall “Tips and Tricks to Maximize Your Energy” at 7 p.m. EDT. Experts will share strategies to find a balance that allows PH patients to enjoy life, engage in meaningful activities and prevent tiring themselves out. Register now. ow.ly/tNbl50ANQJS. #PHAConnects ... See MoreSee Less

We’re an hour away from PHA Connects virtual town hall “Tips and Tricks to Maximize Your Energy” at 7 p.m. EDT. Experts will share strategies to find a balance that allows PH patients to enjoy life, engage in meaningful activities and prevent tiring themselves out. Register now. http://ow.ly/tNbl50ANQJS. #PHAConnects

Comment on Facebook We’re an hour away...

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Join PHA TODAY at 7 p.m. EDT, for an expert virtual town hall on “Tips and Tricks to Maximize Your Energy” with nurse Rosemary Tsacoyianis and PH patients/PHA support group leaders Evette Britton, Lesley Shaffer and Amy Torgerson. Get tips to manage everyday tasks and make the most of each day. Register now: ow.ly/hDf150ANQxU. #PHAConnects ... See MoreSee Less

Join PHA TODAY at 7 p.m. EDT, for an expert virtual town hall on “Tips and Tricks to Maximize Your Energy” with nurse Rosemary Tsacoyianis and PH patients/PHA support group leaders Evette Britton, Lesley Shaffer and Amy Torgerson. Get tips to manage everyday tasks and make the most of each day. Register now: http://ow.ly/hDf150ANQxU. #PHAConnects

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Stress and anxiety can make us feel overwhelmed, especially during a global pandemic. In this PHA Connects virtual town hall, experts and PH patients provide strategies to help you and your loved ones manage challenges that can result from stress and anxiety. Watch now: http://ow.ly/EXQf50ANQ2K.  #PHAConnects

Comment on Facebook Stress and anxiety ...

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I hate PAH!!!

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