Updated COVID-19 Recommendations from UMDF’s Science & Medical Advisory Board – May 2023

COVID-19 Update – Posted May 23, 2023

Although the COVID-19 pandemic is declared over, the COVID-19 virus is still causing illness and death in the United States and around the world.  We now enter the endemic phase, which means that it will be present in the community for the long-term much like the flu virus. Vaccines are widely available, and treatment options continue to improve outcomes for those affected.

We continue to recommend that all patients with PMD ages 6 months and older receive the COVID-19 vaccine as per the Center for Disease Control and Prevention’s recommendations, unless they have a specific contraindication to the vaccine, which should be discussed with their treating physician(s).  The Mitochondrial Medicine Society (MMS), a national organization of mitochondrial disease clinical experts, also recommends vaccination.  Similar recommendations exist from other international health authorities and the UMDF advises reviewing your local health authorities’ recommendations and discussing your specific needs with your local treating health care provider.

The potential short-term side-effects from the vaccine are generally much milder than having the infectious disease itself. If a patient has a specific history of developing side effects after routine vaccination or is severely ill at baseline, certain precautions, and specific Mito-centered care before and after the vaccination should be individually discussed with the treating provider. These may include admission to the hospital for supervision of any reactions, intravenous fluid administration and anti-pyretic medications to control any fever.  Immunologist consultation may also be considered to address specific immune system concerns in each patient.

Most patients with PMD who received the vaccine (85% received mRNA vaccines) had no or very mild reactions after the vaccine. Symptoms within one week of the vaccine were similar to the general population, with fatigue and injection site reaction being more common in patients with PMD. Approximately 10% reported that these symptoms lasted more than one week (Gordon-Lipkin et al. Side Effect Profiles of the COVID-19 Vaccine Amongst Patients with Mitochondrial Disease, 2022 UMDF Mitochondrial Medicine Symposium /2022 Child Neurology Society Annual Meeting).

There are individuals with certain health conditions who require additional vaccine boosters to achieve immunologic protection to COVID-19 compared to most people who receive the usual two or three vaccine doses.  The supplemental vaccine boosters help increase waning immunologic protection from the original vaccines and include new variants of the COVID-19 virus that may not have been covered in the original vaccine, thus enhancing one’s immunity further.

The Food and Drug Administration (FDA) announced, and the Centers for Disease Control and Prevention (CDC) recommended that certain people whose immune systems are compromised moderately to severely might need to receive additional doses of either the Moderna or Pfizer-BioNTech vaccine after the initial two doses. This would include the following patients:

o are actively receiving treatment for cancer, such as leukemia.
o have received an organ transplant and taking medicines to suppress the immune system.
o received a stem cell transplant within the past 2 years.
o are on active treatment with high-dose corticosteroids or other drugs that may suppress an individual’s immune response.
o have advanced or untreated HIV.

Persons, ages 12 and older, who fall into one of the categories above are also recommended to get two booster vaccines.  The CDC outlines the timing of these additional doses depending on the original vaccine. If you or a loved one with PMD has any of these conditions above, please discuss vaccine and booster needs with your treating health care provider.

COVID-19 therapies are improving and increasingly being approved by the FDA for pre- and post-exposure protection, as well as for the treatment of acute COVID-19 infections in the hospital and home setting. These include monoclonal oral antiviral pills (e.g., Paxlovid) and antibody (mab) infusions. No contra-indications for PMD patients to take these drugs are known at this time. Gathering data for many years to come will be necessary to gain a more accurate assessment of what the specific side effects of these drugs might look like in PMD patients.

We continue to observe our patients with primary mitochondrial disease (PMD) tolerate COVID-19 infections well, with the large majority having mild or no symptoms that can be treated at home. In a study of 20 families including 22 children with PMD, at the height of the 2020-2021 pandemic, COVID-19 infection was highly prevalent and undiagnosed in these households despite those families observing strict isolation precautions. In this first major wave of the pandemic, these children with PMD tolerated the COVID-19 infection well with 91% of all children exhibiting an immune marker of recent COVID-19 infection without apparent clinical manifestations (Gordon-Lipkin EM et al. Clinical Trans Med November 2022 doi: 10.1002/ctm2.1100). Despite these encouraging small studies, patients with severe mitochondrial disease, especially those with immune dysfunction or with breathing difficulties (e.g., tracheostomy) remain at higher risk and may develop symptoms deterioration during COVID-19 infections, complications and experience slow recovery.