“People’s initial reaction to this was one of disbelief,” said Katlyn Nemani, a New York University school of medicine neuropsychiatrist and the study’s lead author.
Some researchers initially questioned whether the disparate death rates could be explained by the often poor physical health of people with schizophrenia or their difficulty accessing healthcare. But Nemani’s study controlled for those factors: All the patients in the study were tested and treated for COVID, and they got care from the same doctors in the same healthcare system.
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Then studies started rolling in from countries with universal healthcare systems — the U.K., Denmark, Israel, South Korea — all with similar findings: a nearly three times higher risk of death for people with schizophrenia. A more recent study from the U.K., published in December 2021, found the risk was nearly five times as great.
“You have to wonder, is there something inherent to the disorder itself that’s contributing to this?” Nemani asked.
The immune dysfunction that causes severe COVID in people with schizophrenia could be what drives their psychotic symptoms, Nemani said. This suggests schizophrenia is not just a disorder of the brain, but a disease of the immune system, she said.
Although researchers had already been exploring this theory, the data from the pandemic has shed light on it in a new way, opening doors for discoveries.
“This is a really rare opportunity to study the potential relationship between the immune system and psychiatric illness, by looking at the effects of a single virus at a single point in time,” Nemani said. “It could potentially lead to interventions that improve medical conditions that are associated with the disease, but also our understanding of the illness itself and what we should be doing to treat it.”
In the long term, it could lead to new immunological treatments that might work better than current antipsychotic drugs.
For now, advocates want the data about risk to be shared more widely and taken more seriously. They want people with schizophrenia and their caretakers to know they should take extra precautions. Earlier in the pandemic, they had hoped people with schizophrenia would get vaccine priority.
“It’s been a challenge,” said Brandon Staglin, who has schizophrenia and is the president of One Mind, a mental health advocacy group based in Napa Valley.
When he and other advocates first saw Nemani’s data in early 2021, they started lobbying public health officials for priority access to the vaccines. They wanted the Centers for Disease Control and Prevention to add schizophrenia to its list of high-risk conditions for COVID, as it had done for cancer and diabetes.
But they heard crickets.
“It doesn’t make any sense,” Staglin said. “Clearly, schizophrenia is a higher risk.”
In several other countries, including the U.K. and Germany, people with serious mental illnesses were prioritized for vaccines from the beginning of the rollout in February 2021. In the U.S., though, it wasn’t until people were getting boosters in October 2021 that the CDC added schizophrenia to the priority list.
“We were happy when that happened, but we wish there had been faster action,” Staglin said.
It’s always like this with mental illness, said Myrick.
“It’s like we have to remind people,” she said. “It’s just sort of, ‘Oh yeah, oh right, I forgot about that.’”
This story is part of a partnership that includes KQED, NPR, and KHN.
Kaiser Health News is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.