{Note: this letter was written by me and Andrea Lytle Peet, and co-signed by over 50 people with ALS and their caregivers in NC, to petition for higher priority access to COVID vaccines for people with ALS and others with high-risk medical conditions.}
February 5, 2021
Dear Members of the NC COVID-19 Vaccine Advisory Committee,
We write to you as a group of NC citizens in a high-risk medical category, to petition you to press the NC DHHS to reconsider its prioritization plan for access to the COVID-19 vaccine. Though we represent only one rare disease — all of us are living with the neurological disease ALS (or are caregivers) – we advance an argument that speaks to the urgent needs of many other North Carolinians living with other serious medical conditions.
At present, the portion of the NC population most at risk of dying or developing severe complications from COVID (“Adults at High Risk of Exposure and Increased Risk of Severe Illness”) are (unless a health care worker, resident or staff in a long-term care setting, over the age of 64, or an essential frontline worker) relegated to category 4, only one level above the general population, and below a number of other categories.[1]
We are, moreover, disappointed to learn that the current prioritization plan is the result of a change made in January 2021 that demoted people with high-risk medical conditions from category 2.2 to category 4.[2] The earlier plan had placed people with high-risk medical conditions ahead of (non-frontline) essential workers.[3]
The new NC prioritization protocol is at variance with the spirit of CDC guidelines[4], which places people at high risk in the same category (1c) as “other essential workers” and the general population age 65 and over. Those same CDC guidelines list as one of three goals to “decrease death and serious disease as much as possible,” which clearly signals the ethical imperative to prioritize people with serious preexisting health conditions.
We do not see the logic in prioritizing healthy 65 year olds or the broad category (as North Carolina has defined it) of “essential workers” over the portion of the population living with high- risk medical conditions. For a patient group like ours, with weakened respiratory functions, exposure to COVID-19 puts us at enormous risk.[5] Though we are sure that the NC DHHS did not intend to send a message that it puts less value on our lives than those of the healthy population, it is hard not to interpret the revised NC guidelines any other way.[6]
We note as well that some other states have placed their medically high-risk populations nearer to the top of priority groupings, rather than near the bottom. In its ongoing assessment of how states are prioritizing groups, the Kaiser Family Foundation found that 19 states include younger adults with high-risk medical conditions in phase 1a or 1b, including six states that have updated their priority groups since mid-January.[7]
Our understanding is that the prioritization guidelines each state is adopting are living documents and are frequently updated, as government authorities respond and adapt to new circumstances and knowledge. We hope that flexibility can facilitate a revision of the NC guidelines in a way that levels the playing field for people living with serious medical conditions.
We thank you for your service to the community in providing guidance to DHHS on the difficult decisions related to vaccine access. We are grateful for your time and consideration of this request, which is made not just for those of us with ALS, but for all NC residents suffering from high-risk medical conditions. We hope to hear back from you at your earliest convenience. Our points of contact are Dr. Ken Menkhaus, at kemenkhaus@davidson.edu, and Andrea Lytle Peet, at andreapeet@yahoo.com.
Sincerely,
Ken Menkhaus
Andrea Lytle Peet
Larry Falivena
David Lloyd
Ed Rapp
Dana Baker
Jeanne Luther, and caregiver John Luther
Michael S. Bereman, PhD, and caregiver Meagan Bereman
Chris Heal, and caregiver Laura Heal
Kristin McCoy
Coral Thorpe
Willie Mae Oldham, and caregivers Dalton Neal Olham, Christopher Neal Oldham and
Christain Curtis
Nancy Meres
Corinne Crownover, and caregiver Christopher Eckert
Linda M. Kubis
Randy Floyd
Margaret Broadwell
Ben Matthews, and caregiver Deborah Matthews
John Chamblin, and caregiver Beth Chamblin
Emily and David Milliot, caregivers to Kathryn Stocum
Sally Weber
Rubi and Darvin Cante Lemus, caregivers to Jose Flores Cante
Jeff Farlow, and caregiver Elizabeth Farlow
William Crocker
Pat and Nancy Bowes
Bruce Oberhardt and caregiver Mindy Oberhardt
Stephen Poe
Roger Faulkner
Roz Skidmore and caregiver Tommy Skidmore
Gary Cole and caregiver Mary Lou Cole
David M. Williams, Jr, and caregiver Jeanette M. Williams
Lawrence Cepuran
Thomas Corbett, and caregiver Doris Corbett
Amy R. Peacock, caregiver
Edith E. Eichler
Marie-France Eloi
Donald W. Wilson, and caregiver Becky Wilson
Roger Friedensen
Gail Hardy, caregiver
James D. Baker, and caregiver Nancy Baker
Kenneth Moffitt
Debra James, and caregiver William James
Randall Keen
Seth Hicks, and caregiver Kimberly Hicks
Napoleon Wallace, and caregiver Edna Wallace
Robert Kubis
Jonathan David Rodden, and caregiver Debby Rogan Rodden
Sebrina Hernandez
[1] Based on the NC DHHS “Find My Vaccine Group” website: https://findmygroup.nc.gov/
[2] Lexi Wilson, “As North Carolina Expands Who Can Get the COVID-19 Vaccine, Some Are Being Bumped Down the List” WCNC (January 16 2021) https://www.wcnc.com/article/news/health/coronavirus/covid-vaccine-priority-list-north-carolina-chronic-illness-high-risk/275-55809e67-0b81-4453-b56c-0bf7886f7e52
[3] “NCDHHS Shares Updated Rollout Plan for COVID-19 Vaccinations” (December 30, 2020) https://www.ncdhhs.gov/news/press-releases/ncdhhs-shares-updated-rollout-plan-covid-19-vaccinations
[4] CDC, “When Vaccine is Limited, Who Should Get Vaccinated First?” (January 21, 2021) https://www.cdc.gov/coronavirus/2019-ncov/vaccines/recommendations.html
[5] The ALS Association has just sent a letter to CDC reporting new data from the Veterans Administration confirming that veterans with ALS who contract COVID-19 are three times more likely to die than veterans with COVID-19 who do not have ALS. https://www.als.org/navigating-als/living-with-als/covid-vaccines
[6] We note that other people with disabilities and high-risk medical conditions have objected to vaccine prioritization plans that appear to enshrine discrimination against high-risk populations. See for instance Elliot Kuklas, “Where’s the Vaccine for Ableism?” New York Times (February 4 2021) https://www.nytimes.com/2021/02/04/opinion/covid-vaccine-ableism.html?searchResultPosition=7
[7], Jennifer Tolbert, Jennifer Kates, and Josh Michaud, “The COVID-19 Vaccine Priority Line Continues to Change as States Make Further Updates” (Kaiser Family Foundation, January 21, 2021) https://www.kff.org/policy-watch/the-covid-19-vaccine-priority-line-continues-to-change-as-states-make-further-updates/
Ken's Caucus 