There’s a way of talking about mental illness that emphasizes its physical components as a way to reduce stigma. It goes back to research since World War II about the brain’s biochemical role in mental illness and advocates’ subsequent push to emphasize that role in stigma education programs. If mental illness is biological, the thinking goes, the public will easily accept and emphasize with people who have, say, schizophrenia the way they do people with cancer.

It’s intuitive, it’s well-meaning, and it’s still used today. But since the late ‘90s, it hasn’t been helping. As it turns out, emphasizing the physical aspect of mental illness can actually increase stigma.

That’s the trouble for advocates who know stigma is a roadblock to effective policy and treatment but don’t know the best way to combat it. “There are many, many groups working locally or within states thinking about how they can change attitudes and behaviors around mental health,” said Rebecca Palpant Shimkets, who runs journalism fellowships for the Carter Center’s Mental Health Program. “The vast majority of that work is not evidence-based.”

Reducing stigma is important because the public’s attitudes and discriminatory actions stand in the way of people seeking treatment for their mental illness and substance abuse disorders. Nearly one-half of people with severe mental illness don’t receive treatment. And stigma isn’t bound to stay the same or get better over time — it can worsen. Since 1950, more people have started linking mental illness to violence, especially as mass shootings have increased. But people with mental illness are more likely to be victims of gun violence than perpetrators.

Combatting stigma starts with research, though that work is historically underfunded by the federal government. Each fiscal year, the National Institute of Mental Health, the primary funder of mental illness-related research, throws about $1.5 million at projects related to stigma — making up about 1 percent of the institute’s research budget, which arguably prioritizes funding biomedical work. “Our focus is specifically on understanding how we can intervene to reduce stigma and measure whether the things that we’re doing are actually helping people get treatment and stay in treatment,” says Denise Juliano-Bult, NIMH’s chief of Systems Research and Disablement and Functioning research programs. “Broader things like the impact of public health campaigns, they’re sometimes a challenge with those kind of activities and measuring whether that has led to more people getting treatment.”

Now, stigma research is at a crossroads. In a new American Psychological Association journal called Stigma and Health, there’s finally a clear, prominent home for research. Even more importantly, a team of experts delivered an April report to the Substance Abuse and Mental Health Services Administration outlining six recommendations urging them and other government agencies to focus more on reducing stigma. The report offers a scathing view of U.S. public and private anti-stigma efforts, calling them “largely uncoordinated and poorly evaluated.”

A large part of the suggested fix is a decades-long, research-based national stigma education campaign that brings together public and private sectors. “We agree that the need for ongoing evidence-based approaches, the need to use data to do a better job of tracking public attitudes, is something that both at the federal level as well as in the private sector, we can do a better job of,” says Paolo del Vecchio, SAMHSA’s Center for Mental Health Services director. While del Vecchio also notes the agency is already working on some of the report’s recommendations, the suggestions are crucial in part because the U.S. lags behind other wealthy Western nations — including Canada, Britain, and Australia — when it comes to keeping up with changing attitudes toward mental illness and scientifically evaluating stigma programs. Without evaluation, practices that don’t reduce stigma often go unchecked. “How do we reduce negative public attitudes or misunderstandings about mental illnesses? How do we prevent them from occurring in future generations?” says Otto Wahl, a University of Hartford psychology professor. “Also, how do we help people living with mental illnesses to deal with the stigma and discrimination that surrounds it?”

It’s also an election year, and mental health typically isn’t a high priority in administrations. In many cases, when a new president takes office, researchers are skeptical about how much will change. “It depends upon whether or not [the presidents] themselves have had contact with a person with mental illness,” says Bernice Pescosolido, who researches stigma at Indiana University. Tipper Gore, who advised Bill Clinton on mental health, urged the surgeon general to prepare a report on mental health in 1999. She has talked openly about her depression. George W. Bush, who arranged a President’s New Freedom Commission on Mental Health in 2003, had a close friend with depression. Those are two big mental health-related steps for the federal government, initiated by people from opposing parties.

National studies play a key role in evaluating how stigma has changed, and it’s not easy to fund them. Pescosolido has a 2018 re-study of stigma attitudes among U.S. adults about 25 percent funded. Overall, her Indiana University team is looking for $400,000 to $500,000 to carry out the study, which she also did in 1996 and 2006, and double that amount to also measure attitudes toward mental illness among children. Bureaucracy is another barrier. “Jesus Christ will not get grants through the first time,” says Stigma and Health editor Patrick Corrigan.

Not everyone even agrees that stigma is worth focusing on. The word “stigma” itself is part of the problem for some. One definition refers to blemishes, which can imply that people with mental illness bear marks of shame for their conditions. NIMH and SAMHSA are both shying away from the word, preferring instead to stress social behaviors and discrimination. Rudy Caseres, a Los Angeles man who often speaks about his bipolar disorder through the National Alliance on Mental Illness, points to areas he thinks deserve higher priority than stigma: treatment for people with the most severe cases of mental illness as well as housing discrimination and trouble getting health insurance. “Those are things that actually take people’s rights way, not necessarily making people feel good or changing language and all that stuff,” says Caseres, 28. “That stuff helps, but it shouldn’t be the main focus of getting funding for mental health programs.”

For others, like Lorenzo Washington, a 61-year-old Chicago man eight years into recovery from substance abuse, stigma is very much an obstacle for him and his peers. Through NAMI’s Honest, Open, Proud program, he guides people through deciding if, when, and how to disclose their mental illness and substance abuse backgrounds to others. “There has really been no sort of societal changes that would lead people like me to believe that we’d be embraced or that these stigmas wouldn’t manifest.”

Julie Kliegman

Follow Julie on Twitter @jmkliegman. Julie Kliegman is a freelance writer based in New York. Her work has appeared in The Week, BuzzFeed, Vox, Mental Floss, Paste, the Tampa Bay Times, and PolitiFact