The Federal COVID-19 Public Health Emergency ended on May 11, 2023. COVID-19 has not gone away, but the U.S. Centers for Disease Control and Prevention (CDC) has shifted from an emergency response to incorporating COVID-19 activities into sustainable public health practices. COVID-19 is now a part of everyday life.
COVID-19 can affect your respiratory system (nose, throat, lungs), heart (new or increased arrhythmias), and possibly lead to pneumonia and acute respiratory disease.
Based on experience with COVID-19 and other viral illnesses, patients with lung and heart disease, including congenital heart disease, are at increased risk of becoming sick if infected with COVID-19.
Those with congenital heart defects included in this higher risk group include people with:
- single ventricles or those palliated with a Fontan circulation
- chronic cyanosis (oxygen saturations <85%)
- heart failure or cardiomyopathy requiring medication
- defects requiring medication
- pulmonary hypertension (high blood pressure in the lungs)
- heart transplants
- significant co-existing conditions (such as liver, kidney or chronic lung disease)
- reduced immunity.
The best way to restore protection against COVID-19 and provide enhanced protection against current strains is to get vaccinated. This gives you greater protection against illness, hospitalizations and death, as well as protects you from Long COVID. The virus causing COVID-19 changes all the time and protection decreases over time.
- The CDC recommends that everyone 6 months and older get an updated COVID-19 vaccine. This is no longer referred to as a booster. Currently, these vaccines include Pfizer-BioNTech or Moderna (Spikevax) which are mRNA vaccines. Novavax, another COVID-19 vaccine, which is a protein subunit vaccine, is recommended for people ages 12 years and older. The updated vaccines are monovalent, meaning they based on one variant, XBB.1.5.
- If you had COVID-19 recently, you should delay getting the updated COVID-19 vaccine in the fall 2023 by three months from the date that your symptoms first started. If you did not have symptoms, you should get your vaccine two months from the date of your first positive test.
- You should wait two months from your last COVID-19 booster before getting the updated COVID-19 vaccine in the fall 2023.
- Most insurance plans, including Medicare, pay for the vaccines. If you do not have insurance or your plan doesn’t cover it, check with your local/state/tribal/territorial health department, as well as pharmacies participating in the CDC’s Bridge Access Program.
Any adult with congenital heart disease (CHD), their family members, and everyone who is caring for someone with CHD should be fully vaccinated with one of the COVID-19 vaccines.
If you have any of these conditions, you are at the highest risk of death or severe illness, and it is very important that you get fully vaccinated:
- Eisenmenger syndrome/severe pulmonary hypertension
- cyanotic CHD
- heart failure
Like people without congenital heart disease, you should test if you develop symptoms of COVID-19, including sudden fever, cough, shortness of breath, loss of smell or taste, muscle aches, headache, sore throat etc., or you are exposed to COVID-19. The CDC recommends that you test 5 days after exposure and observe for symptoms for 10 days. If you develop symptoms, start over at day 0. If you are unsure as to the time you should quarantine or isolate, use the CDC's calculator.
There are two types of tests that detect COVID-19. If you test positive with either test, call your adult congenital heart disease doctor, stay home, and isolate yourself for a minimum of five days. Wear a high-quality mask when you are around others in your home or in public. Refer to this page on the CDC website for details about isolation. The types of tests are:
Rapid or antigen tests
- At-home rapid tests are available for purchase at local pharmacies and other places. In general, health insurance providers do not have to waive costs or provide free COVID-19 tests. However, beginning September 25, 2023, each U.S. home can order four free COVID-19 tests that will be delivered to their address. A no-cost COVID-19 testing locator is available here.
- Results are available in 10-15 minutes. You may need to have a follow-up PCR test if you test negative and have symptoms.
- These tests are taken by nasal swab or saliva and must be taken in a medical facility, where they are processed in a laboratory. Results can take up to 1-3 days (maybe more), and are considered reliable, whether you have symptoms or not.
If you are likely to get very sick from COVID-19, you should do two things: notify a medical provider and access treatment.
As an adult with congenital heart disease, you should notify a medical provider if you test positive for COVID-19, either your primary care physician or your cardiologist. To decide who to notify, consider how sick you are feeling. If your symptoms feel mild, contact your PCP. Your doctor may advise you to stay well hydrated, take pain killers as needed for fevers and body aches, and potentially prescribe an oral antiviral medication. In this situation, you can report your COVID-19 diagnosis to your ACHD providers in a later visit.
If your symptoms are difficult or progress from being mild to difficult, you should notify your cardiologist or ACHD specialist right away. Your ACHD specialist should be involved in your care if you need to be admitted to the hospital or require oxygen, as might be needed for Eisenmenger syndrome or other situations.
For accessing treatment, your health care provider can prescribe medicines to help you stay out of the hospital and reduce your risk of getting sicker. Medicines should be started as soon as you test positive and within 5-7 days of developing symptoms. Your ACHD heart doctor will decide which, if any, are appropriate for you. COVID-19 treatment options include:
- Oral antiviral medications, such as Paxlovid or Lagevria: These lessen the ability of the SARS-CoV-2 virus to multiply and spread.
- Monoclonal antibodies given intravenously, such as Veklury (Remdesivir): This medicine also helps stop the virus from making copies of itself in your body.
For her contributions to this content, ACHA thanks Medical Advisory Board member Alice Chan, DNP, AGACNP, CCRN, CHFN, PCCN, clinical program manager of the Adult Congenital Heart Disease Center at Mount Sinai Medical Center, in New York, NY.
Content updated October 26, 2023.
Thank you to Johnson & Johnson for their support of ACHA's patient education and resource activities, including this Q&A.