RARE Daily

Having a Vaccine Is Different than Getting One

September 10, 2020

While there has been much attention paid to the race to develop a vaccine for the COVID-19 virus, one question that looms is how distribution of any approved vaccine will be done. The Everylife Foundation for Rare Diseases wants to make sure people with rare diseases get their due consideration.

The question is of concern within the rare disease community because many people with rare conditions are immunocompromised, or may have heart, lung, kidney, or liver damage that makes them vulnerable to having a serious response to exposure to the virus.

Last week, the Everylife Foundation sent comments to the National Academies of Sciences, Engineering, and Medicine’s ad hoc committee working to develop a framework for vaccine allocation. The framework is intended to help policymakers and health authorities make decisions about equitable allocations for any vaccine. The NAS formed the committee in response to a request from the National Institutes of Health and the Centers for Disease Control and Prevention.

The committee is considering how to set priorities for equitable allocation of vaccine, how should it determine who should be the first recipients of any vaccine, and who should be sequentially added to such a list to receive available doses. Such considerations require weighing issues like health disparities, who is at greatest risk from the virus, which workers need to be protected, as well as populations at higher risk and geographic considerations. A report on the draft framework is available online.

The effort to create a framework is a recognition that once a vaccine is developed and approved, it will still take time to manufacture and distribute enough supply to meet the global demand. That means that policymakers will need to have a plan to determine who will get limited doses until there is an adequate supply. Everylife’s comments come in response to the NAS’ draft report as part of the public comment period that closed September 4.

Everylife emphasized the need to consider people whose rare diseases make them more vulnerable to severe COVID-19 outcomes be in the first group of people to be prioritized following high-risk healthcare workers. It 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,” the organization wrote on its website. “We are hopeful that by hearing from [Everylife Foundtation] 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.”

As part of its recommendations, the Everylife Foundation also noted that as the ad hoc committee continues its work, and as additional groups are formed at the federal, state, and local level to address implementation and distribution of an approved vaccine, that the rare disease patient community and rare disease clinical experts be included as key stakeholders.

It’s an issue rare disease advocates will want to pay attention to in the coming months as the discussion evolves. Ensuring the community’s voices are heard can be the difference between a shot in the arm and a kick in the ass.


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