Charlotte Observer story on COVID vaccine access and ALS

Note: this article quotes three of us from the ALS community — Andrea Lytle Peet, Larry Falivena, and me.

NC residents with severe health problems worry about COVID vaccine delays

BY HANNAH SMOOT

FEBRUARY 22, 2021 12:15 PM, 

Charlotte Observer

https://www.charlotteobserver.com/news/coronavirus/article249317405.html?fbclid=IwAR25TUIuqccm7JzGdzYV7kcLnkIL2iQSkB4hIjIZFMNqbkSUDmMErqTcuT8

For Maura Wozniak’s family, wearing masks and social distancing is nothing new.

The Huntersville woman has cystic fibrosis, and has undergone two double lung transplants. She wears a mask every time she goes to the doctor’s office or hospital — even before the coronavirus pandemic hit — to protect herself and her lungs.

When vaccines first became available, the state prioritized certain groups of people to get the vaccine first — and people with chronic illnesses were initially in an early group. So Wozniak began making plans for after her vaccinations — including sending her kids back to school in person, for one.

Instead, the state changed priority orders. So Wozniak, like thousands of North Carolinians dealing with chronic or even terminal health conditions, must wait until three other groups get vaccines first. And that could take weeks or months.

The delay in getting vaccines has added to the worries of people like Raleigh resident Andrea Lytle Peet, who has ALS. “This time is really precious to us,” she said.

NC CHANGES VACCINE PRIORITIES

In an October plan, North Carolina first divided the vaccine rollout into phases that prioritized the order in which groups would be vaccinated. That plan, and the composition of the priority groups, has changed multiple times since then.

In the earliest plan, people with chronic health conditions were in Phases 1b and 2. Adults age 18 through 64 with one chronic condition — which the state estimated would include roughly 557,000 to 775,000 North Carolinians — fell into the same category (Phase 2) as essential frontline workers, like law enforcement and teachers.

But in late December, the state announced it had updated its vaccination plan — moving the frontline essential workers to Phase 1b. Adults with medical conditions that increased the risk of severe COVID-19 complications would fall under Group 2.

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“The changes simplify the vaccine process and continue the state’s commitment to first protect health care workers caring for patients with COVID-19, people who are at the highest risk of being hospitalized or dying, and those at high risk of exposure to COVID-19,” the N.C. Department of Health and Human Services said at the time.

In mid-January, the vaccination plan was updated once more, moving away from the phased breakdown and separating North Carolinians into broader groups.

Now, people like Wozniak fall into Group 4, the last group prioritized before vaccine eligibility opens up to the general public. And frontline essential workers — which the state estimated could include up to 441,000 people — are prioritized in Group 3, ahead of people with chronic health conditions.

Wozniak said she has heard people argue that unlike essential workers, people with chronic conditions can just stay home. But that’s not true, Wozniak said.

Last and early winter, Wozniak said she was at the doctor’s office once or twice a week. And just this month, she had surgery at Atrium Health, staying in the hospital for two nights.

For people with chronic conditions, not going to doctor’s appointments isn’t an option, she said. “You’re putting yourself at risk by going in — and you have to go,” Wozniak said. “It’s essential.”

LOSING TIME

Apex resident Larry Falivena was diagnosed with ALS in 2017. ALS is a terminal disease. The average survival time is about three years, according to the ALS Association.

Progression of ALS can mean losing the ability to speak and breathe, which means catching a respiratory virus like the coronavirus could be deadly.

At the same time, staying home to avoid exposure to the coronavirus means losing time with loved ones or missing out on experiences people with terminal diseases may not be able to get back, Falivena said.

“You don’t know how much time you have left,” Falivena said.

“So you try to make the most of life. But then on the other hand, now there’s COVID, that puts you at greater risk,” he said. “It’s kind of this strange balancing act of. If I don’t do this now, will I be able to? But at the same time, it’s not worth the risk (of catching COVID-19).”

Like most people, Falivena’s family, including his 16-year-old and nearly 14-year-old sons, have canceled trips and vacations to limit the spread of COVID-19. But like Wozniak, Falivena can’t fully isolate. He’s in a clinical research study at Johns Hopkins, so he flies to Maryland once a month.

Every time he goes to Johns Hopkins, he’s most interested in the tests that evaluate his breathing capacity.

“Losing the ability to breathe is is the biggest factor in terms of longevity of life with ALS,” Falivena said. “…Now you’re facing a virus that attacks and damages your lungs and your nervous system. Maybe even permanently.

“Then to learn that now you’re near the bottom of the list for receiving that vaccine. It was pretty disheartening, especially for people who already need something to hope for.”

FEARING FOR FRIENDS DURING COVID

Lytle Peet, who turned 40 last week, was diagnosed with ALS when she was 33.

She has some trouble speaking due to ALS, but feels lucky that she’s been able to maintain her breathing for so long. Lytle Peet credits that to exercising. She swims every week, meeting her mom at the Life Time pool in Raleigh. They do water aerobics, keeping masks on even in the water.

And she’s done 25 marathons, using a recumbent bike. Lytle Peet is trying to be the first person with ALS to do a marathon in every state.

Her most recent marathon was in December. Fewer people than normal ran, due to COVID-19. But it was still “pretty nerve-wracking” to be in public during the pandemic, she said.

It was a shock to Lytle Peet when she realized people with chronic conditions wouldn’t be able to get the COVID-19 vaccine until after thousands of others took their turns.

“I think of my friends who are declining fast than I am,” she said. “To think that they are spending their last months isolated, away from loved ones, for fear of the virus — that weighs on me. Most people have decades ahead of them. But we don’t.”

‘A MATTER OF LIFE AND DEATH’

Many people with ALS in N.C., including Lytle Peet and Falivena, wrote to the NC COVID-19 Vaccine Advisory Committee. They asked it to press the state Department of Health and Human Services to reconsider the prioritization plan, that puts people with chronic health conditions in Group 3.

Davidson College Professor Ken Menkhaus, an ALS Association Board of Trustees member, said getting the COVID-19 vaccine is “a matter of life and death” for people with chronic health conditions.

The main difference between the state’s first vaccination plan and the current one is the shifting of people with chronic health conditions behind frontline essential workers, Menkhaus said.

“That’s a huge group of people,” Menkhaus said of essential workers. “You get behind that, and you’re months and months away from getting a vaccine.

“The message that they sent, whether they meant to or not, is that our lives matter less than other members of the community,” said Menkhaus, who was diagnosed with ALS in 2018.

North Carolina DHHS did not answer a question from The Observer about whether the state has plans to reassess the priority groups. But DHHS spokeswoman Catie Armstrong said in a statement: “The vaccine prioritization is designed to save lives and prevent spread while vaccine supplies are limited.”

The state is aligned with CDC recommendations on priority order, Armstrong said.

Wozniak understands the vaccine rollout can’t be perfect. Still, she says the state has had months to plan for this and put priority groups in place.

“For someone like me, who fought like hell to live through two double lung transplants, and am in the prime of my life with a young family — I don’t want to get this (virus),” she said. “I want the vaccine. I want to be able to go on.”

Petition to the NC COVID Vaccine Advisory Committee

{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/