The EveryLife Foundation sends letter to federal COVID-19 response leadership outlining the roadblocks the rare disease community is experiencing during the COVID-19 vaccine rollout.

The letter was informed by the members of the Community Congress COVID-19 Response Working Group, including representatives from patient advocacy organizations, industry partners and other rare disease stakeholders.

While state and local governments play a critical role in vaccine prioritization, communication and distribution, federal guidance addressing the needs of the rare disease community could improve the pace and extent of statewide efforts to meet the needs of our high-risk population. The letter was also forwarded to the leadership of the National Governors Association.

Within the letter we provided four recommended focus areas for the COVID-19 Response Team’s communication to states including:

• Reinforce to states that the list of conditions used as examples of individuals with underlying medical conditions was NOT intended to be used to strictly limit the people eligible for vaccine in Phase 1c AND encourage states to follow ACIP recommendations that high-risk adults be included in phase 1c.
• Prioritize unpaid family caregivers, including adult siblings in the household, as healthcare workers under COVID-19 vaccine allocation guidelines;
• Ensure accessible and safe vaccine administration sites, taking into consideration the needs of the blind, disabled, cognitively impaired, and elderly; and,
• Facilitate better communication to the public by drafting templates for state and local health departments to customize and use in their outreach to communicate vaccine prioritization phases, vaccination sites, resources to schedule vaccinations, required documentation, and related information.

We will continue to work with the members of the COVID-19 Response Working Group in the coming weeks to support their state-based outreach and to monitor the status of safe and timely vaccine access for rare disease patients and caregivers.

View letter