This morning we finally heard from the Governor's Office. Unfortunately, the response was lacking. There wasn't much substance to the response other than to say, many groups need vaccination, we do not have enough supply, and that they are "largely following CDC guidelines" as to who gets vaccinated first.

In our response to their response, we reiterated the risks for adults with Down syndrome, continued to make our case that the state's plan should be based first and foremost on those at the greatest risk of serious illness and death, and pointed to the updated CDC guidelines from January 12 which advise states to expand their definition of the high-risk adult population from 75+ to also include 65+ AND those with underlying conditions and to vaccinate that group now. (https://www.forbes.com/sites/rachelsandler/2021/01/12/cdc-expands-vaccine-eligibility-to-everyone-65-and-older-anyone-with-an-underlying-health-condition).

There follow up response was as follows:
"...please understand that in my use of the word “largely,” I was referring more to the changing nature of federal guidance. We are following federal guidelines and working through what comes next. You may know that the announcement you listed about adding 65+ individuals and individuals with underlying conditions by the outgoing administration on January 12 was then followed by President-elect Biden on January 15, focusing on the 65+ population (https://www.whitehouse.gov/briefing-room/statements-releases/2021/01/15/fact-sheet-president-elect-biden-outlines-covid-19-vaccination-plan/). We are eager for more clarity from the incoming administration on any changes to priority groups."

This was tough to stomach. One, passing responsibility up the chain to the administration (whichever one) is tough when the ultimate decision is the Governor's. Two, we do not read the Biden Administration's 1/15 press release in the same way and assume as a marginalized community we were still a priority group. Three, we are fairly confident that it would have made NATIONAL news if one administration had explicitly included prioritizing underlying conditions and the other administration stripped that priority away three days later.

And that's where you all come in.  Share your own story and share this story. Write to our Governor, Health Commissioner and your legislators, both state and federal to share the need for a risk-based plan. Share the data we have presented. Send any connections or ideas my way - sarah@dsamn.org.

"The increased risk conferred by Down syndrome in terms of COVID-19 hospitalization and mortality is equivalent to adding 40 years to your birth certificate. Individuals with Down syndrome in their 40s and 50s are seeing rates of hospitalization and mortality similar to the general population in their 80s and 90s.” - Joaquin Espinosa, executive director of the Linda Crnic Institute for Down Syndrome.