Mar. 2—With two people in their household considered high risk for COVID-19, the Koch family has been extremely cautious during the pandemic.
They have not stepped foot in a grocery store in nearly a year, opting instead for curbside service. The two sons are distance learning this year and both parents are working from the family's Waterville home.
So when the state shifted its policy and announced on Friday that vaccine eligibility will be based strictly on age in Maine moving forward — with no consideration for underlying health conditions — Hilary Koch said she was "stupefied and really crushed."
Both Koch and her husband, who has a heart condition, may not be eligible until May, while their older son probably won't be in line for a shot until July. Meanwhile, it is unclear when or if Koch's 14-year-old son with type 1 diabetes — an autoimmune disorder that makes any illness more dangerous — will be eligible.
"For every single person who is high risk, I'm sorry but this policy doesn't serve them — it really doesn't and it puts them at the back of the line," Koch said on Monday. "I feel misled and I feel that people with medical disabilities have been misled."
The Kochs have plenty of company in their frustration.
The Mills administration's announcement that it was changing to age-based eligibility for COVID-19 vaccines provided some level of predictability to hundreds of thousands of Mainers wondering for months when it will be their turn for a shot. In addition to Mainers 60 and older becoming eligible this Wednesday, the rough timeline predicts vaccines in April for those in their 50s, in May for individuals in their 40s, in June for those in their 30s and over the summer for everyone else over age 16.
But for hundreds of thousands of others, the new policy likely means they will not be eligible for vaccination before their age group. That's because the state will no longer give higher priority to individuals with a high-risk medical condition or those in front-line positions.
Gov. Janet Mills and state health officials knew that the shift would be unpopular with people who have underlying health conditions and those who face higher risks of exposure because they are teachers, grocery store workers, postal clerks or hold other so-called "essential" jobs.
But they said the age-based system is the fastest and most efficient way to achieve "herd immunity" while offering the best chance of reducing deaths and serious illnesses among older Mainers, who have had the highest fatality rate during the pandemic.
"Given that Maine has the highest median age of any state, this approach is what is right for Maine based on the scientific data," Dr. Nirav Shah, director of the Maine Center for Disease Control and Prevention, said on Friday. "For both operational and epidemiological reasons, this age-based approach is what will be best for Maine in terms of saving the most number of lives in the shortest amount of time."
That population-wide approach does little to assuage the anger and frustration among individuals who will no longer be given priority due to high-risk medical conditions — a shift that runs counter to recommendations from the U.S. Centers for Disease Control and Prevention.
Sherri Hartwell pointed to research out of the United Kingdom showing that individuals with Down's syndrome are five times more likely to be hospitalized and 10 times more likely to die of COVID-19 than the general population.
Hartwell's 39-year-old daughter, Julie, is a high-functioning individual with Down's syndrome who lives on her own and worked for years at a local restaurant until it closed during the pandemic. Julie "does what she needs to do to be safe," including wearing a mask, washing her hands and observing all other safety protocols, Hartwell said.
But Hartwell is distressed by the risks her daughter faces and believes the state should make exceptions for people with Down's syndrome given the emerging research.
"Right now, all I care about is keeping her safe," Hartwell said. "I'm angry that the state and the medical people don't seem to know a lot about this. ... I'm not angry so much about the age piece. I get it: we are in a tough situation. But in cases like this, I wish there was a way for some of these (conditions) that they could be vaccinated earlier."
Maine has one of the lowest COVID-19 infection and death rates in the nation. But the virus has taken a deadly toll on the state's oldest residents.
Mainers 70 or older account for just 12 percent of all COVID-19 cases in Maine but more than 85 percent of all deaths. Meanwhile, just 2 percent of all deaths in Maine have occurred among people under age 50.
For months, Maine's official vaccination strategy had placed people with high-risk medical conditions within Phase 1B along with older Mainers and so-called "essential" workers consistent with federal recommendations. But states are given broad latitude to decide how to distribute vaccine doses, and last week Maine joined Connecticut and a handful of other states in adopting an age-based approach.
Research shows that obesity, diabetes, some forms of cancer and other underlying health conditions place individuals at a greater danger from COVID-19. But Maine's status as the nation's oldest state — with 21.5 percent of residents 65 or older — and the logistical challenges of prioritizing vaccines for high-risk individuals led them to the controversial, age-based approach.
Jeanne Lambrew, commissioner of the Maine Department of Health and Human Services, acknowledged that some individuals have higher risks based on their medical conditions. But the reality is that state's policy has to be based on groups, not individuals, Lambrew said.
"The evidence does strongly suggest that the grouping that matters the most is age," Lambrew said last week. "So we have to do an approach that is a population based and group-based for the state of Maine. We don't have the ability or the capacity to go one by one to do eligibility determinations. As Governor Mills articulated as well, these are hard decisions. But we went with the science."
Doctors who for months have been urging high-risk patients to sit tight now find themselves having to urge even more patience.
Dr. John Winters, an oncologist at New England Cancer Specialists, said that COVID-19 vaccination is often the very next question patients have after they are done talking about their cancer care. And he suspects many patients will feel like they've had the rug pulled out from under them after hearing for months that they would likely be eligible during Phase 1B.
Winters said cancer is not one disease — it is a thousand different diseases, some of which clearly put patients at a higher risk of serious illness or death from COVID-19. Some types of cancer, for instance, involve bone marrow transplants or treatments that inevitably kill immune system cells. In a few of his cases, Winters said, patients had actually planned to delay treatment until after vaccination.
"We're generally supportive of the Maine CDC and appreciate their efforts to get doctors and private practices vaccinated previously," Winters said. "I think they are making a calculation on trying to save as many lives as possible, so I understand that. But I do think there are a lot of people (with high-risk conditions) who are being left out in getting the vaccine and who are more vulnerable than people who are now in line in front of them."
Koch, the Waterville mother, has been urging people affected by the policy shift to contact their legislators in hopes of pressuring the Mills administration on the issue. She also is taking on the role of advocating for all people affected by the decision, not just those with diabetes.
"I would say the fact that my husband and son are still alive doesn't mean that their ages are determinant," Koch said. "It just means that we have taken extraordinary measures to keep them safe during the past year."
Like the Kochs, 44-year-old Stephen Corral of Gardiner said he has been "playing it extra, extra cautious" throughout the pandemic as he works from home, avoids the grocery store and even seeing friends. Because type 1 diabetes affects the immune system, even a common cold can pose a significant health risk and take longer for him to recover.
As a health care business analyst with a background in statistical research, Corral took a different message from the data that Shah, the Maine CDC director, presented last week to support the age-based system. While age is clearly a major indicator of risk, Corral pointed out that diabetics also are much more likely to die after contracting COVID.
"I'm hoping if there is significant pushback that the administration will reconsider," Corral said. "I think it is unfortunate they decided to go against the U.S. CDC recommendations and that they changed course and created more confusion with this policy change. Public health requires a lot of public trust ... and I'm concerned how changes late in the game will affect that trust."