Letter to State Health Officials Regarding Vaccine Access for Patients with Mitochondrial Disease and Metabolic Disorders

Access to COVID-19 Vaccines for the Mitochondrial Disease Community and Patients with Metabolic Disorders


January 4, 2021


Dear Administrator:

As the leading advocacy group representing patients with mitochondrial disease or metabolic disorders, we thank your state health department for its ongoing efforts to distribute COVID-19 vaccinations equitably and effectively. We respectfully write to encourage you to include individuals living with mitochondrial disease or other metabolic disorders as a priority in the administration of any FDA-approved or authorized COVID-19 vaccine.


Mitochondrial disease is an inherited chronic illness that can be present at birth or develop later in life. Mitochondrial disease is progressive and can cause physical, developmental and cognitive disabilities. Symptoms include poor growth, loss of muscle coordination, muscle weakness and pain, seizures, vision and/or hearing loss, gastrointestinal issues, learning disabilities, and organ failure. One in 5,000 individuals has a genetic mitochondrial disease. There is no cure, but there are treatments that may help with the symptoms.


The United Mitochondrial Disease Foundation (UMDF) strongly believes that individuals living with a mitochondrial disease or metabolic disorders should be included in Phase I (high-risk populations) of your state’s COVID-19 vaccination administration.  Due to the complexity of such disorders, our patients are at increased risk for COVID-19. The effects of COVID-19 could be devastating for mitochondrial disease patients and patients with metabolic disorders, both children and adults, and are at a high risk for neurological and organ damage during times of extra stress on the body. This includes during and for the two weeks following an illness, such as COVID-19.


That is why we request that individuals living with a severe, multisystemic mitochondrial disease or metabolic disorders should be included in Phase I (high-risk populations)COVID-19 vaccination administration due to the complexity of such disorders, and patients are at increased risk for COVID-19.

Cardiac, neurological, muscular, and sometimes immunological, and potential additional risk factors put individuals with these diseases at higher risk for severe COVID-19.

We welcome the opportunity to discuss our request further. For questions, please contact Philip Yeske, PhD, UMDF’s Science and Alliance Officer, at philip.yeske@umdf.org.



Brian T. Harman

President & CEO