Advocacy Groups Call on Governors to Prioritize Vaccination of Rare Disease Patients and Caregivers

Rare Daily Staff

A group of more than 70 advocacy groups, healthcare providers, and biotech companies issued a letter to the National Governors Association that calls on states to immediately prioritize Americans with life-threatening rare diseases in their COVID-19 vaccine rollouts.

In late January, President Biden announced a strategy committed to vaccine distribution for high-risk individuals, specifically those with underlying conditions, including rare diseases. However, the 25-30 million individuals in the United States with rare diseases and their caregivers have yet to be prioritized in many states. The letter has already been submitted to several states and will be presented to every state in the coming weeks.

“Due to the complexity of such diseases like TSC, rare disease patients are at an increased high risk for neurological and organ damage if they are infected with COVID-19,” said Kari Rosbeck, president and CEO of the TS Alliance. “Additionally, if their caregivers are exposed and forced to quarantine, it adds additional concerns for irreversible outcomes associated with lack of care and potentially catastrophic consequences for those with rare diseases. This is why prioritizing individuals with rare diseases—as well as their caregivers—in state vaccination plans is an urgent matter.”

Over the course of the past year, the pandemic has uniquely impacted the rare disease community, in some cases leading to disease regression. Families have lost access to vital resources such as physical, occupational, and speech therapies, and many have also experienced delays in routine care management due to the high risk of exposure to COVID-19 in their communities.

Global Genes, publisher of Rare Daily, is a signatory of the letter.