Former lawmaker Mindy Greiling is her son Jim’s staunchest advocate. Since he was diagnosed with schizoaffective disorder in 1999, she’s done everything in her power to help him get the mental health support he needs, find a place to live and a job that keeps his troubled mind occupied.
As a 10-term member of the Minnesota House of Representatives, Greiling authored and advocated for legislation supporting individuals who care for loved ones with mental illness. And when COVID-19 hit, she and her husband invited Jim — recovering from a hard breakup with his girlfriend — to move in with them in their Roseville home.
This position of motherly advocacy meant that Greiling, when in her role as board president of NAMI Ramsey County learned about medical studies reporting that people with schizophrenia are the second most likely after the elderly to die if infected with COVID-19, knew that she had to jump into action.
She got online and began searching for groups around the world that were advocating for people with schizophrenia to be added to the list of individuals eligible for early vaccination. Her searches were mostly fruitless.
She visited an online schizophrenia support forum, hoping to make connections with other people who were working to get their loved ones with schizophrenia vaccination priority status.
“I put a question up there to ask if anyone knew that COVID-19 is especially dangerous for people with schizophrenia, and if they knew of organizations that are advocating around that,” Greiling said. “A couple of people from the U.S. responded, saying no one here is doing anything. I was astounded that no one was organizing the parents.”
Some countries, Greiling learned, including Denmark, Germany, the Netherlands and the United Kingdom, were allowing people with severe mental illness to be vaccinated earlier, but the movement hasn’t caught fire stateside.
This reality felt particularly frustrating for Greiling, author of the memoir “Fix What You Can: Schizophrenia and a Lawmaker’s Fight for Her Son.” She said she wants Jim — and others like him — to be eligible for the vaccine, because their lives are on the line.
“I think it is blatant discrimination that people with schizophrenia are passed over. I think some people consider them to be throwaway people.”
In late February, citing the same studies that alerted Greiling to this issue, NAMI Minnesota urged Gov. Tim Walz’s office and the Minnesota Department of Health (MDH) to consider people with schizophrenia and members of the mental health workforce for priority status for COVID vaccination.
Sue Abderholden, NAMI Minnesota’s executive director, said that as a group, people with schizophrenia need vocal advocates who can speak directly to those in positions of authority. This research, she said, pointed to serious risk of death for a marginalized group that often does not have power or influence.
“I want to make sure that people with schizophrenia, even if we cannot convince the Department of Health to move them up on the vaccination list, will at least have someone to make sure they get vaccinated when they are eligible,” Abderholden said. “Most folks with schizophrenia don’t have family members like Mindy who are strong advocates for them.”
One of many
Abderholden would be the first to admit that staff at MDH have their hands full, that many groups around the state are already barraging them with requests to move their members up on the vaccine priority list. She admits she’s not optimistic that NAMI’s request will help give people like Jim Greiling priority status.
“We recognize that the real problem is there’s a shortage of vaccines,” Abderholden said. “We get that. I know the department has been using CDC guidelines and research to do their work, to make decisions about who gets priority — not the number of people who have been calling them.”
She said she wouldn’t want to trade places with MDH staff during this stressful time. But after reading the research, she and her colleagues at NAMI felt compelled to step forward make the case for individuals with schizophrenia.
“I’m not beating up the health department,” Abderholden said. “I wouldn’t want to be them right now: They are being forced to make really tough decisions. But I also want to make sure that family members of people with schizophrenia know that their loved ones are at higher risk of dying. And if there is any way for me to help them get vaccinated sooner, I’d like to do that.”
George M. Realmuto, professor emeritus of psychiatry at the University of Minnesota, believes that the risk of serious illness and death from COVID-19 infection is significant enough for people with schizophrenia that MDH should take NAMI Minnesota’s request seriously. People with the schizophrenia often have a combination of the comorbid conditions that already qualify them for vaccination priority, he said, but even those who do not are still at greater risk of negative results from infection with the virus.
“There already is a list of people who are qualified for vaccination now because of underlying medical conditions like diabetes, hypertension, obesity,” Realmuto said. “If you have schizophrenia, you may have one of those conditions or you may not, but your risk of hospitalization and death is still two and a half times greater than the general public’s, even when controlled for the underlying conditions.”
Because he believes that many people don’t think that a mental illness like schizophrenia deserves to be given the same status as a physical illness like diabetes, Realmuto said he believes that it may be hard for decision makers to wrap their heads around the concept that a mental illness might actually make a person more susceptible to a disease. But scientifically sound research backs up the belief that mental and physical illness are intertwined.
Schizophrenia is, Realmuto said, “as much of a brain disease as epilepsy.” That means it should be taken just as seriously, and that people with the disease deserve special protections.
Officials at MDH said that all requests for special vaccine status are carefully evaluated by staff. In a statement to MinnPost, representatives from the department said, in part, “The COVID-19 pandemic has taken a terrible toll on our families, our communities and our state. We know there are many who want and deserve a vaccine now. However, the current vaccine supply remains far too low to meet the strong demand across our state, and so we have needed to focus our strategy on immunizing for impact.”
The department’s strategy, the statement continues, closely follows federal recommendations for prioritizing groups they believe are known to be at increased risk: “The list of underlying medical conditions that make people eligible for vaccination in Minnesota is based on CDC’s lists of known conditions that put people at higher risk of COVID-19 as well as input from Minnesota health care providers. We know that there are other rare conditions that may put someone at higher risk for COVID-19, and we do have information in our guidance for providers to make those determinations based on their clinical judgement.”
‘We need to think creatively’
One of the reasons that the risk of negative outcomes from COVID infection for people with schizophrenia is high may be that many people with the disease lack strong social connections, said C. Sophia Albott, assistant professor of psychiatry at the University of Minnesota. This isolation makes it harder for people with schizophrenia to build connections with health care professionals or other organizations that can advocate for their care.
“I think part of the disease is that people have greater difficulty in their everyday lives accessing health care,” Albott said. “There can be beliefs and history that can make them less trustful of health care establishments — although that isn’t unique to people with schizophrenia. A number of marginalized communities are legitimately wary of the medical establishment.” When it comes to distribution of the COVID-19 vaccinations, Albott added, making sure that members of these groups have access to care “can be tricky.”
She said that the JAMA report on COVID-19 mortality and serious mental illness is “a really striking finding,” that only underlines the urgency of getting the vaccine to as many people with schizophrenia or other serious mental illness as possible. But she acknowledges that even without priority status, vaccinating the majority of the state’s schizophrenic population will likely be tricky.
“To reach these vulnerable people, we need to think creatively,” Albott said.
Abderholden agrees. Even letting people in this group know that they are eligible for a vaccine could take extra focus and ingenuity: “Many people with a serious mental illness like schizophrenia might not have a primary care physician. They might not be connected to a major insurer who would let them know when it’s their time for the vaccine. Same with members of BIPOC communities and people who are poor and live on the margins.”
Albott suggested that one approach to letting people with schizophrenia know when they are eligible for vaccination might be to make the vaccine available in places they trust.
“Wouldn’t it be nice if in our outpatient psychiatric clinic at the university were able to offer vaccines for our patients?” she asked. “There are nurses there who would be qualified to administer the shots.” The University of Minnesota also runs a program called NAVIGATE for people experiencing first-episode psychosis, Albott added. Maybe participants could get vaccinated during their regular appointments.
Another way to make sure that people with schizophrenia get vaccinated would be to distribute doses to community support programs (CSP), community mental health providers that offer support and social connections for people with serious and persistent mental illness. Abderholden said that she has been in conversation with staff at local CSPs, trying to find out more about vaccine status in their communities: “I’ve talked to some of the community mental health providers. They tell me a lot of their staff has gotten vaccinated, but not so much their clients.”
Greiling said that she believes that for people like her son Jim, family involvement will be key to successful vaccination.
“You have to activate the families,” she said. “Most people with schizophrenia aren’t going to advocate for themselves.”
But family support only goes so far. Jim is an adult, and Greiling knows she can’t live his life for him. Lately, he’s been struggling with sinus congestion, a common side effect of one of his antipsychotic medications. When Jim scheduled an appointment with his primary care physician, Greiling encouraged him to ask if he could get a COVID vaccine.
“I said,” she recalled, “‘Why don’t you ask if there are any leftover vaccines? Tell her you are three times more likely to die of COVID because you have schizophrenia.’” Jim did ask for a vaccine, Greiling said, but, “he was told no, they aren’t vaccinating for any preexisting conditions.”
Later, Jim was scheduled for a visit with an ear-nose-and-throat specialist. Greiling urged her son to ask about the vaccine again.
The urging was an exercise in futility, Greiling said: “I know he won’t ask a second time. People with schizophrenia are easily punched in the head as far as asking questions. If someone looks at them cross-eyed, they quit.”
The long history of discrimination against people with schizophrenia, from painful and ineffective treatments to unnecessary hospitalizations and debilitating medications, means that many people with the diagnosis avoid seeing physicians at all costs, Realmuto said.
“If you have a mental illness and you know you’re stigmatized and discriminated against, you are going to need serious encouragement to go and get your shot.”
Not every person with schizophrenia maintains close family ties, but for those who do, educating caring family members about the risks associated with COVID infection could save lives, Greiling said.
“There’s no strong organization for the families to inform them about these dangers. I think some families aren’t aware of this, and the truth is, in many cases it will be up to them to make sure their loved one gets in for their shot. I don’t think anyone with schizophrenia is going to be begging for a vaccine.”
Not enough of a priority
Greiling said she understands that there are many people in Minnesota clamoring for a vaccine. But she said she still believes that the fact that despite strong scientific evidence of their serious risk of hospitalization and death, people with schizophrenia haven’t been given priority status is evidence of a larger societal discrimination against those with serious mental illness.
“I’m quite incensed about this,” she said. “It’s the tip of the iceberg of all this junk that goes on for people with schizophrenia. All of us who deal with schizophrenia feel extra layers of discrimination everywhere.”
Albott said that she’s also inclined to see reluctance to put move people with schizophrenia up on the vaccination list as a sign of a general attitude of disinterest in their well-being.
“There is a lot of stigma associated with mental illness. I hate to think that discrimination and stigma are behind the reluctance to prioritize this group [for vaccination], but I’m not sure why there isn’t better acknowledgement of the vulnerability and risk for these patients.”
This concern extends to members of other marginalized communities, Albott said. In Minnesota, and across the United States, COVID has revealed deep differences between the level of care received by different groups.
“What is so heartbreaking is that people who are already struggling are the ones who are impacted by this economic downturn and they also seem to be the ones who are most impacted by COVID,” she said. “The divide that already existed just got wider because of COVID.”
People with schizophrenia are already discriminated against every day, Realmuto said: “Because I’m a skeptic, I go right away to the idea that this lack of prioritization is discrimination, because they don’t want to identify mental illness as a problem.”
Even before COVID-19, people with schizophrenia faced significant health challenges, he continued: “The mortality of people with schizophrenia is different. Their life span is 20 years less than the general population.”
The MDH statement stressed the need for all Minnesotans, including those with schizophrenia or other serious mental illnesses, to take the steps needed to get in line for vaccination.
“We encourage people to talk to their health care provider and make sure they are signed up for the Vaccine Connector to receive additional information on vaccine opportunities when they are eligible,” the statement read. “Everyone who wants a vaccine will be able to get one, but it will take some time.”
Suggesting that people with schizophrenia take their place in line and wait patiently for a vaccine doesn’t sit well with Greiling.
“I think it just isn’t enough of a priority,” she said. “It’s feels like more low expectations for people with schizophrenia, like, ‘They can’t do any better. We should focus on people who can do better.’ It’s really frustrating.”