Former first lady Rosalynn Carter championed many causes during her lifetime. But she held a special place in her heart for mental health.

Carter, who died on Sunday at age 96, used her platform to sound the alarm about the inadequacies of the nation's mental health system.

"She was in it way before anyone else, and she really used her position as first lady to advance the whole cause of those with mental illness," says former Rep. Patrick Kennedy, D-R.I.

Rosalynn Carter's interest in mental health dated back to her husband's run for governor of Georgia. On the campaign trail, family members of people with mental illness would tell her in hushed tones how difficult things were. Half a century ago, people were ashamed to talk about mental illness, but Carter did not shy away.

"She imagined that we would have mental health treatment, just the same way that people were going to the doctors for their physical health," says Dr. Rebecca Brendel, a past-president of the American Psychiatric Association.

The landmark Mental Health Systems Act of 1980, which Carter championed while President Jimmy Carter was in office, was a game changer, Brendel says. It called for major investments in community-based mental health treatment.

The measure passed but would later be stripped of funding after President Ronald Reagan took office in the '80s.

"If we had followed Mrs. Carter's lead, from the time that she began advocating for the availability of mental health [services], we would be in a very different place than we are, really playing catch up in making mental health services available to every American," Brendel says.

Despite the setback, Rosalynn Carter persisted.

Though the nation's mental health system still falls short in myriad ways, Carter didn't give up on the idea that it could be better. She titled her 2010 book on the issue Within Our Reach, because she believed the problems could be solved.

Eve Byrd, director of the Carter Center's mental health program, says Carter in recent years would tell stories about her struggles getting policymakers to engage on the issue.

"She said, 'I was first lady and you would not believe how difficult it was to get people to come and talk about these services, these needs and this issue,'" Byrd says. "She was persistent and worked very hard to get people to talk about it. What sets her apart is that she recognized the stigma, and really more so the discriminatory behaviors that come from that stigma."

It would be another three decades before community mental health treatment would be federally funded again, through the Affordable Care Act, which was signed into law by President Barack Obama in 2010.

Before the ACA, Rosalynn Carter lobbied for another federal bill: the 2008 Mental Health Parity and Addiction Equity Act.

The measure, co-sponsored by Kennedy, would require insurance companies to cover mental illness on par with other medical issues.

Kennedy says the Parity Act passed in part because it got tacked onto the $700 billion bailout for banks aimed at stabilizing the economy; but also because it got a big boost from Carter, who came to Capitol Hill to testify in support of the measure.

"Mrs. Carter was key," Kennedy says. "I don't think we passed it because there was any great outcry to finally end the separate and unequal treatment of those who have a brain illness versus another illness of their body. There was just really not a whole lot of other people coming in with any kind of celebrity at all wanting to associate themselves with this cause."

Fast forward to 2023, and there are numerous examples of how Carter's persistent work, over so many years, has born fruit.

Earlier this year, the Biden administration strengthened a rule to make insurance cover mental health care.

Dr. Brendel with the American Psychiatric Association says Carter's efforts also helped spur federal funding for research on mental illnesses.

There's also the new national three-digit mental health crisis line, 988, she says, which "parallels emergency medical services, and can put any American and every American in touch with a trained crisis counselor when they're experiencing any kind of mental health crisis or emergency."

And Carter's mental health work was not limited to the U.S. In the early 2000s, she focused on Liberia, where the mental health workforce was essentially non-existent.

"We've been in Liberia for 15 years," says Byrd. "[We've] gone from one psychiatrist to over 350 clinicians... helped them pass their first mental health law."

Carter also understood the power that the media has in shaping public perception. For so long, harmful depictions of people with mental illness in movies and news coverage perpetuated stereotypes and fueled stigma and discrimination.

To help counter those negative impacts, the Carter Center established the Rosalynn Carter Fellowships for Mental Health Journalism. Since 1996, hundreds of Carter Fellows, myself included, have been trained in how to dismantle stigma through storytelling and report on mental health accurately and with compassion.

Kennedy, who went on to found the mental health advocacy organization the Kennedy Forum, says he came to the Carter Center in Atlanta on numerous occasions to speak with Carter Fellows.

"It's not a very romantic kind of legacy to say how you're going to train reporters to write about this stuff," Kennedy says. "But if you think about it, it had profound implications in terms of policy towards mental health, if reporters can really write about it in a way that educates people. And boy, what an impact that has for the whole field."

Rosalynn Carter's strength was her "dogged persistence," Kennedy says. "She definitely was one for the ages, because she was around all the way through. It wasn't just a brief period where she lent her name. She was in it to win it, as we like to say."

Byrd attributes Carter's persistence to her faith and commitment to living her life in service to society.

"Also, in working with the community of persons with lived experience, she saw remarkable transformation and success when people got the treatments and supports that they needed," Byrd says. "That instilled great hope for her."

Brendel says she's grateful to Rosalynn Carter for being an example of compassion and dedication for anyone who hopes to bring about lasting change.

"We have to stick with it, it doesn't happen overnight," Brendel says. "Her legacy will always be that she stuck with it right until the end ... and her legacy will live on with all of us."

Christine Herman is a journalist based in Champaign, Ill., and a 2018-19 Rosalynn Carter Mental Health Journalism Fellow.

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