Ever since Marty Parrish was 17, he has struggled with bouts of major depression.
"It tends to run in cycles," recalls the resident, now 58, of Johnston, Iowa, a suburb of Des Moines. "When I'm on medication, and medication is working, my symptoms are alleviated."
But his symptoms would often return when he had to stop taking medication because of side effects from long-term use. Finding a new medication that worked could take weeks or even months, he says, during which he'd find himself slipping back "into a brain fog, in a dark hole of depression."
Eventually his mental illness cost him his marriage, business and home. And his treatment came to a halt.
"I could go to a free county mental health clinic and see a counselor, or a therapist," he says. "I could even get a prescription for medication, but I couldn't pay for the medication."
For many Americans who, like Parrish, live with a mood disorder, cost remains a major hurdle to accessing mental health care, according to a survey on mood disorders published this week by the National Alliance on Mental Illness, or NAMI.
Over half of the survey's respondents (which included people living with mood disorders and their caregivers) said that cost prevents them from trying a treatment they're interested in, says psychiatrist Ken Duckworth, NAMI's chief medical officer.
Cost was also the reason for discontinuing treatment for about a quarter of the respondents who were able to get care.
Even finding a mental health care provider can be hard
The survey also revealed that many people don't even know how to find mental health support.
"Forty-eight percent are unsure if they're eligible to receive care, and nearly as many are unsure about how to access services," Duckworth says.
"All of those issues are barriers to care," notes Sika Yeboah-Sampong, a staff attorney at the advocacy group Legal Action Center who works with a New York state program to expand access to addiction and mental health services.
For one, many people with mood disorders are unemployed and uninsured, says David Lloyd, a senior policy adviser at the mental health advocacy group the Kennedy Forum.
"Some of these conditions — they're particularly disabling [and] can result in people being unemployed," he says. Losing insurance that way is not uncommon.
But even for people with Medicaid or private health insurance, getting access to therapy and other kinds of mental health support remains complicated, hard to navigate and expensive, Yeboah-Sampong says.
For one, insurers' directories for in-network mental health care providers "aren't always accurate or up to date," she says. It's not uncommon to find names of providers there who have died, moved away or retired.
And even accurate in-network listings for mental health tend to be small.
Why aren't more therapists in network?
"One reason that the lists are narrow, it's that historically reimbursement rates for mental health providers have been much lower than for physical health providers," Yeboah-Sampong says.
That continues to be true, according to a 2019 analysis by Milliman, a risk management company.
As a result, a large proportion of therapists and psychiatrists are out of network, she says, and in-network providers are often overworked with long waitlists.
All of this forces people with a mental illness to seek out-of-network care.
"What we see all the time is either a plan doesn't have any out-of-network benefit at all — in which case you're paying completely out of pocket — or the much higher cost-sharing for the out-of-network provider," Lloyd says. That can deter families from reaching out to get the help they need.
Why patients often ration their use of mental health care
Patients will instead pay for as long as they can — say two to three months — "and then, the funds run out, and they have no care," Yeboah-Sampong says.
Ultimately, these hurdles to getting mental health care produce a lack of parity between insurance coverage of mental and physical health, she adds, despite the 2008 Mental Health Parity and Addiction Equity Act, which requires insurers to cover mental health the same way they cover physical health.
"There's just a lack of enforcement [of] the federal parity law," Yeboah-Sampong says.
Any money insurers save there shows up as other costs, Lloyd notes — untreated mental illness is closely linked to poorer physical health. And then, there are costs associated with disability and unemployment. "And of course, we've seen huge spikes in fatal overdoses over the last year," he adds.
With the rise in mental health symptoms during the pandemic, he says, it's even more urgent to improve access to care for everybody. People are now more open to discussing their mental health, this week's survey notes.
People who do get treatment find it helpful
"The public is beginning to recognize in a new way that mental health is a health care priority, and a large percentage of people seem to appreciate that it could happen to anyone," Duckworth says.
The survey also found that when people were able to get treatment, the majority — 70% — found it helpful.
After years of homelessness, Parrish was eventually able to get the mental health support — including the medications — he needed to get his health and life back. He credits his recovery to the undying support of one person in his life.
"I ultimately found support in an individual who later became my wife — who understood the challenges [I] faced," he says. She "was down there with me, even to the point of assisting by taking me to appointments, to make sure that I got my medications."
MARY LOUISE KELLY, HOST:
More than a year into the pandemic, people have become more open to discussing their mental health. But getting help for mental illness remains a big challenge, with cost being a major hurdle. Those are the main findings of a new national survey. NPR's Rhitu Chatterjee reports.
RHITU CHATTERJEE, BYLINE: The survey asked respondents a range of questions about mood disorders.
KEN DUCKWORTH: And mood disorder is defined as depression, postpartum depression, bipolar disorder, seasonal affective disorder - kind of the spectrum of mood.
CHATTERJEE: Dr. Ken Duckworth is a psychiatrist and the medical director for the National Alliance on Mental Illness, or NAMI, which conducted the survey.
DUCKWORTH: The public is beginning to recognize in a new way that mental health is a health care priority, and a large percentage of people seem to appreciate that it could happen to anyone.
CHATTERJEE: However, Duckworth says the survey also found that access to care was still a big problem. Many weren't sure how to access services, and a majority felt that the cost of care was inhibitive.
DUCKWORTH: Fifty-two percent of people said cost prevents them from trying a treatment they're interested in, and the population of uninsured people reported 74% say cost prevents them from trying a treatment (ph).
CHATTERJEE: Over 6 in 10 people who sought treatment stopped because they couldn't afford it anymore. Sika Yeboah-Sampong is a staff attorney at the advocacy group Legal Action Center. She says most people who are insured and seeking mental health care often start with a list of in-network providers.
SIKA YEBOAH-SAMPONG: But the issue with that is that the directory isn't always accurate or up to date.
CHATTERJEE: She says it's not uncommon to find providers who have died, moved away or retired. And she says these directories for mental health are often narrow to begin with.
YEBOAH-SAMPONG: One reason that the lists are narrow - it's that, historically, reimbursement rates for mental health providers have been much lower than for physical health providers.
CHATTERJEE: And it continues to be low even today, she says, which is why many therapists and psychiatrists aren't part of insurance plans. And providers who are in-network are often overworked and have long waitlists. All of this forces people to seek out-of-network care.
YEBOAH-SAMPONG: So they're paying more out of pocket. And maybe they're able to do that for a couple of months, three months, and then the funds run out, right? And then you have no care.
CHATTERJEE: Untreated mental illness can have devastating consequences on people's lives. Marty Parrish lives in a suburb of Des Moines, Iowa. And at one point, he lost everything because of his depression.
MARTY PARRISH: I ended up actually losing marriage, family and home and business, and I became homeless.
CHATTERJEE: That stopped the treatment he could afford when he was employed.
PARRISH: I could go to a free county mental health clinic. I could even get a prescription for medication, but I couldn't pay for the medication.
CHATTERJEE: He eventually got better, he says, because his now-wife stood by him and helped him get the care he needed. David Lloyd is a senior policy adviser for the Kennedy Forum, a mental health advocacy group.
DAVID LLOYD: We're foolish if we think we're saving money by making these types of health care, you know, unaffordable to people.
CHATTERJEE: He says untreated mental illness can add to other societal costs.
LLOYD: You know, higher costs associated with unemployment, disability. And of course, you know, we've seen huge spikes in the - you know, in fatal overdoses over the last year.
CHATTERJEE: And with the rise in symptoms of mental illness during the pandemic, Lloyd says it's even more urgent to improve access to care for everybody. Because as the new survey shows, of the people with mood disorders who did get treatment, the vast majority found it helpful.
Rhitu Chatterjee, NPR News.
(SOUNDBITE OF TRENT REZNOR AND ATTICUS ROSS' "PIECES FROM THE WHOLE") Transcript provided by NPR, Copyright NPR.