The EveryLife Foundation Submits Comments on the Discussion Draft of the Preliminary Framework for Equitable Allocation COVID-19 Vaccine

Since the start of the COVID-19 pandemic, many rare disease patients and their families have largely put their lives on hold, making all possible sacrifices to reduce the likelihood that they would contract COVID-19. For many, the uncertainty over how long these sacrifices will be necessary adds to the daily challenges of increased isolation and disruption in vital services. Our community’s hope for resuming activities of daily living rest on the development, approval and distribution of a safe and effective vaccine — and on the implementation recommended COVID-19 preventive practices in the community.

We have watched with great optimism as vaccine developers work with unprecedented speed. However, we know that the regulatory review and approval of one or many COVID-19 vaccines is only the first step. The allocation, distribution and administration of vaccines is a complex process that will likely start while the available supplies do match come close to matching the demand and when there is limited evidence to guide individual’s benefit/risk discussions about getting vaccinated.

Last week, the National Academies of Sciences (NAS) took the first step in creating a framework to guide how a COVID-19 vaccine would be equitably allocated. Their report was requested by the federal government who will use it to create guidelines that will likely be operationalized by each state as vaccines are produced. While the NAS report is just the first step in the process of creating guidelines, it is important to engage early and often to make sure the needs of the rare disease community are reflected in vaccine prioritization recommendations.

After consulting with numerous partners, including the leaders of our EveryLife Community Congress COVID-19 Response Working Group and Access Working Group, The EveryLife Foundation submitted comments that emphasized the need to expressly consider people whose rare diseases make them more vulnerable to severe COVID-19 outcomes in the first group of people to be prioritized following high-risk healthcare workers. We also stressed the need to consider household members and paid caregivers of people with these high-risk rare diseases and emphasized that after the vaccine has been proven safe and effective for children, those with rare diseases should be similarly prioritized.

The draft report that the NAS issued is a good start, but unfortunately, the tools that they are using to create priority categories just don’t reflect the needs and nuances of the rare disease community. We are hopeful that by hearing from ELF and many of you in the rare disease community that also submitted comments, future iterations will come closer to ensuring this vital lifeline is available as quickly as possible after approval.

For now, it is worth stressing the importance of staying current on all recommended immunizations so that we can reduce the likelihood of being impacted by these other serious conditions and protect those among us who can’t be vaccinated. That is why we joined 185 other organizations in supporting the Keep up the Rates Campaign.

We urge all members of the rare disease community to engage with us in these critical discussions through involvement with RDLA. For organizations interested in learning more about the Community Congress COVID-19 Response Working Group, please contact Jack Meloro at jmeloro@copdfoundation.org.

View The EveryLife Foundation’s Comment

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