Rachel and her husband adopted Marcus out of Guatemalan foster care as a 7-month-old infant and brought him home to Lansing, Michigan. With a round face framed by a full head of dark hair, Marcus was giggly and verbal — learning names of sea animals off flashcards, impressing other adults.

But in preschool, Marcus began resisting school, throwing himself on the ground, or pretending to be sick — refusals that got more intense and difficult to deal with. His parents sought therapy for him. Rachel and her husband had some savings for retirement, college, and emergencies; at first, the cost of Marcus’ therapy was not an issue. “We didn’t realize where it was going,” Rachel said.

Today, Marcus is 15 and has a younger sibling. His parents have depleted their savings and gone into debt to pay for treatments for his severe depression, anxiety, and mood disorders. Frequently agitated and increasingly violent, Marcus could not attend a regular school. Over the years, he’s needed weekly therapy, hospitalization, and specialized schooling — all of which has cost tens of thousands of dollars a month.

He required lots of medical and mental health appointments that were often many miles from the family’s home. Rachel ultimately quit her real estate broker’s job to care for her son, and with that the family took another financial hit. With no good treatment options within hours of where they live, Marcus is now in residential care out of state that specializes in therapy for children with conditions like his. That’s helped modulate his behavior, but also costs $12,500 a month.

“All of our savings is gone,” said Rachel, who spoke on condition of anonymity to protect her son’s privacy. She and her husband have taken out a second mortgage and borrowed against their retirement accounts.

“How are we going to send our kids to school?” she said. “How are we going to recover from this? I don’t know.” Just surviving the string of crises is all-consuming. “Those thoughts in your mind — there’s no space for that when you are just trying to keep your child alive.”

Untold numbers of families like Rachel’s are dealing with myriad challenges finding and paying for mental health care, and then ending up in debt. There are too few therapists and psychologists in the U.S. — and fewer still who accept insurance. That compounds the financial toll on families.

Tabulating the impact isn’t easy. Many do what Rachel did: They refinance their houses, drain college savings, or borrow from family. But that kind of borrowing often isn’t included in estimates of medical debt. As a result, it’s hard to know how much families are paying out of their pockets for mental health treatment.

A recent designed to measure the many ways people borrow to pay medical bills found that about 100 million Americans have some kind of health care debt, and 20% of those owe money for mental health services.

Those who can’t afford to borrow sometimes try to get coverage for their children under public insurance like Medicaid, which sometimes means reducing their income to qualify.

When Even Medicaid Isn’t a Safety Net

After her workplace health insurance denied coverage for her 9-year-old daughter, Colleen O’Donnell, a single mom from Providence, Rhode Island, applied for aÌýÌýto qualify her daughter for Medicaid. At the time, she earned too much to get her on Medicaid without it.

But when the pandemic started, she had to stop working and stay home to care for her daughter, who suffers from, among other things,ÌýÌý— a condition that goes far beyond normal tween moodiness.

Treatment didn’t require just medication or visits to the doctor or hospital; the girl needed wrap-around therapy that included in-home care. The child’s unpredictable moods and violent tantrums made it impossible to send her to school, or for her mother to hire a sitter to care for her.

Once she stopped working, her income was low enough that, in fact, the whole family qualified for Medicaid, including her 9-year-old.

O’Donnell, a registered nurse, could have made lots of bonus pay caring for covid-19 patients, but she continued to stay home. She took on a second mortgage for $22,000. She estimates at least $60,000 in lost wages a year.

O’Donnell recently decided to start working again. But the added income means her family could lose Medicaid coverage, so she will have to reapply for the special waiver for her daughter. If she doesn’t qualify, she may have to cut her income back to stay on Medicaid, she worries.

“Qualifying for Medicaid means essentially you’re living right around the poverty level, which means I’m not generating any sort of wealth, I’m not saving for retirement or anything like that,” said O’Donnell.

Some desperate families go to even more extreme lengths to get mental health care covered by Medicaid. Some leave their children at hospitals, relinquishing custody, so they become wards of the state. Others simply forgo care altogether.

So, how much is this costing families across America? And how many are forgoing care? It’s hard to know.

Lack of Data Keeps Struggling Families in the Shadows

“We don’t have real data,” said Patrick Kennedy, a former member of Congress and founder of the Kennedy Forum, a mental health advocacy group. Across the board, he said, there’s a lamentable lack of data when it comes to mental illness. “We don’t track this. We have a hodgepodge of reporting that’s not standardized.”

That lack of data keeps many people in the shadows, Kennedy said. It makes it hard to hold insurers accountable for they have to pay for mental health care, or to argue for specific policy changes from regulators that oversee them. Kennedy said that problem should not fall on the shoulders of the many families who are too busy fighting to survive.

“If you’re a family or someone who has one of these illnesses, you don’t have the capacity for self-advocacy, right? And shame still factors in, in a large way,” he said.

Rachel, the mother in Lansing, estimates Marcus’ treatment costs topped a quarter-million dollars over the past two years alone. Nearly all that, Rachel said, was driven by care their insurance company declined to cover.

Over the years, Marcus underwent numerous neuropsychological tests, checking everything from intelligence and personality to trauma and motor skills to gauge the gaps in how he perceives the world. Each test cost several thousand dollars. Weekly therapy cost $120. Special schools, including a wilderness therapy program, cost thousands of dollars a month, and Rachel said insurance covered almost none of it.

The insurer cited various reasons: The wilderness therapy, even if it worked, was deemed too experimental. Other treatments weren’t in-network. Even when Marcus became increasingly violent and a danger to himself and others, insurance agents repeatedly told Rachel that various types of inpatient or residential treatment programs and specialists recommended to her weren’t covered because they were “not medically necessary” or would require reauthorization within days.

Meanwhile, Marcus’ problems at home were escalating. “There were times that I hid,” Rachel said, voice breaking. “I found hiding places so that my kid couldn’t find me. He would hurt me. He would attack me, throw things at me, push me.”

Faced with this do-or-die situation, Rachel and her husband decided to pay the costs of the care themselves and fight it out with insurance and lawyers later. For the past year, they’ve spent $150,000 to send Marcus to his out-of-state school.

What About ‘Mental Health Parity’ in Reimbursement?

That growing reliance on out-of-network care for mental health treatment is a national trend, despite various federal and state laws requiring insurers to cover services like addiction treatment on par with CT scans, surgeries, or cancer treatments. found those disparities getting markedly worse, especially among children, between 2013 and 2017 — effectively forcing more patients to seek behavioral health care outside their insurer’s network.

AHIP, a health insurer trade group, said the industry complies with existing laws and is working to expand options to meet increased demand for mental health care.

“Given the workforce and capacity shortages in [mental health and substance use disorder] care, it’s important that patients receive the appropriate level of care, helping to preserve higher levels of care for those who need it most,” David Allen, an AHIP spokesperson, said in an emailed statement. He said insurers are taking measures like adding new providers to their networks, and adding telehealth options to expand their reach into places like . But, he said, not every kind of care should qualify for coverage: “It is important to make sure that people receive high-quality care based on scientific evidence.”

Regulators Have Been Slow to Police Insurers

But Deborah Steinberg, a health policy lawyer at the Legal Action Center, which advocates for consumers, said insurers improperly deny coverage for appropriate treatments far too often. Few people know how to determine that, and end up paying the bill.

“They are actually not necessarily bills [patients and families] should be paying, because a lot of the time these are illegal practices,” Steinberg said. “There are so many complicated laws here that people don’t understand. And when people pay the bills or take it out as credit card debt, they’re not challenging those practices.”

Nor have regulators been aggressive in policing insurers, or fining them for violations.

That’s something Ali Khawar pledges to change. Khawar, an acting assistant secretary at the Labor Department’s Employee Benefits Security Administration, which oversees private insurers, said showed high levels of violations. The report also showed the insurance industry failing to keep adequate data on their compliance with parity laws.

But, Khawar said, coverage of mental health care is a problem he hears about continually, and the fact that so many families are struggling has made this a top priority for his agency. “There is a level of attention, a level of resources being put to these issues that is kind of unprecedented,” he said.

Often, it falls to attorneys general to enforce insurance rules, and the willingness and resources available to do so varies by state.

In Michigan, where attorney J.J. Conway practices, the state has not been active in investigating the industry, he said. So families must seek recourse on their own, he said, if they want to with their insurer. Conway, who represents Rachel’s family and many other parents, said he’s seeing the biggest surge in mental health disputes in his 25 years as a lawyer.

Conway said there’s a strange silver lining in the sheer number of families now struggling to get mental health coverage. The cases are so numerous, he said, he hopes collectively they’ll eventually force a change.

About This Project

“Diagnosis: Debt” is a reporting partnership between KHN and NPR exploring the scale, impact, and causes of medical debt in America.

The series draws on original polling by KFF, court records, federal data on hospital finances, contracts obtained through public records requests, data on international health systems, and a yearlong investigation into the financial assistance and collection policies of more than 500 hospitals across the country.Ìý

Additional research wasÌý, which analyzed credit bureau and other demographic data on poverty, race, and health status for KHN to explore where medical debt is concentrated in the U.S. and what factors are associated with high debt levels.

The JPMorgan Chase InstituteÌýÌýfrom a sampling of Chase credit card holders to look at how customers’ balances may be affected by major medical expenses. And the CED Project, a Denver nonprofit, worked with KHN on a survey of its clients to explore links between medical debt and housing instability.Ìý

KHN journalists worked with KFF public opinion researchers to design and analyze the “.” The survey was conducted Feb. 25 through March 20, 2022, online and via telephone, in English and Spanish, among a nationally representative sample of 2,375 U.S. adults, including 1,292 adults with current health care debt and 382 adults who had health care debt in the past five years. The margin of sampling error is plus or minus 3 percentage points for the full sample and 3 percentage points for those with current debt. For results based on subgroups, the margin of sampling error may be higher.

Reporters from KHN and NPR also conducted hundreds of interviews with patients across the country; spoke with physicians, health industry leaders, consumer advocates, debt lawyers, and researchers; and reviewed scores of studies and surveys about medical debt.

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The report on patient access to behavioral health care during the covid-19 crisis also casts doubt on whether insurers are abiding by federal law requiring parity in insurance coverage, which forbids health plans from passing along more of the bill for mental health care to patients than they would for medical or surgical care.

The are “the tip of the iceberg” in how Americans with mental, emotional and substance use disorders are treated differently than those with physical conditions, said JoAnn Volk, a research professor at Georgetown University’s Center on Health Insurance Reforms who studies mental health coverage.

The GAO report, shared before publication exclusively with KHN, paints a picture of an already strained behavioral health system struggling after the pandemic struck to meet the treatment needs of millions of Americans with conditions like alcohol use disorder and post-traumatic stress disorder.

Up to 4 in 10 adults on average reported anxiety or depression symptoms during the pandemic, the report showed, compared with about 1 in 10 adults in early 2019.

During the first seven months of the pandemic, there were 36% more emergency room visits for drug overdoses, and 26% more visits for suicide attempts, compared with the same period in 2019.

As the need grew, already spotty access to treatment dwindled, the GAO found: A survey of members of the National Council for Behavioral Health, an organization that represents treatment providers, showed 27% reported they laid off employees during the pandemic; 35% reduced hours; and 45% said they closed programs.

Worker shortages have long been an obstacle to accessing behavioral health services, which experts attribute in large part to problems with how providers are paid. Last fall the federal government estimated that more than one-third of Americans live in an area without enough providers available.

Provider groups interviewed by GAO investigators acknowledged staff shortages and some delays in getting patients into treatment. They noted that the pandemic forced them to cut outpatient services and limit inpatient options. They also told the researchers that payment issues are a significant problem that predated the pandemic. In particular, the GAO said, most groups cited problems getting reimbursed by Medicaid more often than any other payer.

Sen. Ron Wyden (D-Ore.), who chairs the Senate Finance Committee, requested the report from GAO after hearing complaints that constituents’ insurance claims for behavioral health care were being denied.

In an interview, Wyden said he plans to embark on a “long-running project” as chairman to make care “easier to find, more affordable, with fewer people falling between the cracks.”

Spurred by how the pandemic has intensified the system’s existing problems, Wyden identified four “essential” targets for lawmakers: denied claims and other billing issues; the workforce shortage; racial inequality; and the effectiveness of existing federal law requiring coverage parity.

For Wyden, the issue is personal: The senator’s late brother had schizophrenia. “Part of this is making sure that vulnerable Americans know that somebody is on their side,” he said.

State and federal officials rely heavily on people’s complaints about delayed or denied insurance claims to alert them to potential violations of federal law. The report cited state officials who said they “routinely” uncover violations, yet they lack the data to understand how widespread the problems may be.

Congress passed legislation in December that requires that health plans provide government officials with internal analyses of their coverage for mental and physical health services upon request.

Part of the problem is that people often do not complain when their insurer refuses to pay for treatment, said Volk, who has been working with state officials on the issue. She advised that anyone who is denied a claim for behavioral care should appeal it to their insurer and report it to their state’s insurance or labor department.

Another obstacle: Shame and fear are often associated with being treated for a mental health disorder, as well as a belief among some patients that inequitable treatment is just the way the system works. “Something goes wrong, and they just expect that’s the way it’s supposed to be,” Volk said.

The GAO report noted other ways the pandemic limited access to care, including how public health guidelines encouraging physical distancing had forced some treatment facilities to cut the number of beds available.

On a positive note, the GAO also reported widespread approval for telehealth among stakeholders like state officials, providers and insurers, who told government investigators that the increased payments and use of virtual appointments had made it easier for patients to access care.

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A by Milliman, a risk management and health care consulting company, found that patients were dramatically more likely to resort to out-of-network providers for mental health and substance abuse treatment than for other conditions. The disparities have grown since Milliman published a similarly grim study two years ago.

The latest study examined the claims data of 37 million individuals with commercial PPO health insurance plans in all 50 states from 2013 to 2017.

Among the findings:

• People seeking inpatient care for behavioral health issues were 5.2 times more likely to be relegated to an out-of-network provider than for medical or surgical care in 2017, up from 2.8 times in 2013.
• For substance abuse treatment, the numbers were even worse: Treatment at an inpatient facility was 10 times more likely to be provided out-of-network — up from 4.7 times in 2013.
• In 2017, a child was 10 times more likely to go out-of-network for a behavioral health office visit than for a primary care office visit.
• Spending for all types of substance abuse treatment was just 0.9% of total health care spending in 2017. Mental health treatment accounted for 2.4% of total spending.

In 2017, 70,237 Americans died from drug overdoses, and 47,173 from suicide, according to the Centers for Disease Control and Prevention. In 2018, nearly 20% of adults experienced a mental illness, according to the National Alliance on Mental Illness.

“I thought maybe we would have seen some progress here. It’s very depressing to see that it’s actually gotten worse,” said Dr. Henry Harbin, former CEO of Magellan Health, a managed behavioral health care company, and adviser to the Bowman Family Foundation, which commissioned the report. “Employers and insurance plans need to quadruple their efforts.”

Insurance plan networks are simply inadequate, Harbin said, which is no surprise, given that insurance companies consistently reimburse behavioral health providers at lower rates. The study found, for example, that primary care office visit rates were on average 23.8% higher than rates for behavioral health office visits.

If a plan had a shortage of oncologists or cardiologists, he said, an insurance company would pay more to get additional providers into the network. “It can be done pretty quickly. Just raise rates in the areas where you’re short, like they do on the medical side.”

Dr. Tom Insel, a psychiatrist who serves as chief adviser to California Gov. Gavin Newsom on mental health issues, called the results of the study “stunning.” In California, the report found that inpatient behavioral health care was 7.8 times more likely to be out-of-network.

“For people with serious mental illness, you actually have better access to care if you have Medi-Cal than commercial insurance. That is virtually unthinkable for medical conditions,” said Insel, who led the National Institute of Mental Health from 2002 to 2015. “We would never permit this for heart disease or cancer.”

Cathryn Donaldson, a spokeswoman for America’s Health Insurance Plans, the industry’s main trade group, said insurers are working diligently to ensure they are complying with the federal parity law. But the national shortage of mental health providers, along with the many clinicians who do not want to participate in insurance networks, contribute to more patients needing to go out-of-network for care, she said.

“Health insurance providers regularly assess the adequacy of their provider networks so patients have timely access to behavioral health care while accepted metrics are used to track and improve patients’ outcomes,” Donaldson wrote in an email.

Michael Thompson, president and CEO of the National Alliance of Healthcare Purchaser Coalitions, said the Milliman report confirms what he has been hearing from employers. “This has become a situation that they can’t deal with anymore. When their people try to get appointments with network psychiatrists, they can’t even get a phone call returned.”

When employers select a plan for workers, they usually consider whether the network will be adequate, Thompson said. But often these are “phantom networks” of providers who no longer accept the insurance or are not taking new patients. “What happens if you’re effectively buying a damaged product?” he said.

Often, patients and their families suffer the consequences. In 2017, Terresa Humphries-Wadsworth took her 14-year-old son to an emergency room in their hometown of Cody, Wyo., because he was expressing thoughts of suicide. The staff sent him to the closest hospital with a psychiatric unit. It was 100 miles away in Montana. Her son spent 10 days there before Humphries-Wadsworth learned the hospital was out-of-network. The closest in-network facility was 200 miles away from their home.

The family ended up with $110,000 in out-of-pocket expenses for two inpatient visits and residential treatment. They negotiated the amount down with the hospital and a collections agency, then took out loans to pay it off, she said.

Earlier, when her son developed diabetes, there was no question of the insurer paying for his treatment, said Humphries-Wadsworth, a psychologist. “How is his mental health — which was life-threatening — not covered in the same way as his diabetes, acute care needs? Why are they not treated the same?”

Former U.S. Rep. Patrick Kennedy, who sponsored the federal parity law and now runs the Kennedy Forum, which focuses on implementing the law, said the solution is clear: “The moment [insurers] make payment the same for brain illnesses as for any other illnesses, the sooner we’re going to get to people having the access to the treatment they need.”

Following the release of the Milliman report, the Kennedy Forum and several other mental health organizations to Chairman Frank Pallone (D-N.J.) of the House Energy and Commerce Committee and Chairman Bobby Scott (D-Va.) of the House Education and Labor Committee calling for congressional hearings on parity.

Meiram Bendat, a mental health lawyer who has brought several parity lawsuits, said much stronger enforcement by states and the federal government is needed to ensure that patients get the access they are guaranteed under the law.

“Without substantial fines against insurers, nothing is going to change because there’s no incentive to change,” he said.

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por Milliman, una consultora de administración de riesgos y salud, encontró que los pacientes solían recurrir a proveedores fuera de la red para el tratamiento de la salud mental y la drogadicción. Las disparidades han aumentado desde el anterior informe publicado por Milliman hace dos años.

El último estudio examinó los datos de 37 millones de personas con planes PPO en los 50 estados entre 2013 y 2017.

Algunas de las conclusiones:

• En 2017, las personas que buscaron atención hospitalaria por problemas de salud mental tuvieron 5,2 veces más probabilidades de ser referidas a un proveedor fuera de la red que por atención médica o quirúrgica, en comparación con 2,8 veces en 2013.
• En el tratamiento por drogadicción, las cifras fueron todavía peores: fue 10 veces más probable que se proporcionara hospitalización fuera de la red, en comparación con 4,7 veces en 2013.
• En 2017, un niño tenía 10 veces más probabilidades de salir de la red para una visita de salud mental que para una cita de atención primaria.
• El gasto para todo tipo de adicción fue sólo el 0,9% del gasto total en atención de salud en 2017. El tratamiento de salud mental representó el 2,4% del gasto total.

En 2017, 70,237 estadounidenses murieron por sobredosis de drogas y 47,173 por suicidio, según los Centros para el Control y Prevención de Enfermedades (CDC). En 2018, casi el 20% de los adultos sufrieron una enfermedad mental, según la National Alliance on Mental Illness.

“Pensé que tal vez habríamos visto algún progreso. Resulta deprimente ver que en realidad hemos empeorado”, dijo el doctor Henry Harbin, ex director ejecutivo de Magellan Health, una compañía de atención de salud mental, y consejero de la Bowman Family Foundation, que encargó el informe. “Los empleadores y las aseguradoras deben cuadruplicar sus esfuerzos”.

Las redes de las aseguradoras son simplemente inadecuadas, señaló Harbin, lo que no es ninguna sorpresa dado que las compañías de seguros reembolsan sistemáticamente a los proveedores de salud mental tarifas más bajas. El estudio encontró, por ejemplo, que las visitas al consultorio de atención primaria fueron en promedio 23.8% más altas que las visitas al de salud mental.

Si un plan tuviera una escasez de oncólogos o cardiólogos, dijo, una aseguradora pagaría más para incrementar el número de proveedores en la red. “Es rápido de hacer. Sólo hay que subir las tarifas en las áreas donde te faltan, como lo hacen en el área médica”.

El doctor Tom Insel, asesor del gobernador de California Gavin Newsom en temas de salud mental, calificó de “impactantes” los resultados del estudio. En California, el informe encontró que la atención de salud mental de los pacientes hospitalizados tenía 7,8 veces más probabilidades de realizarse fuera de la red.

“Las personas con enfermedades mentales graves tienen mejor acceso a la atención con Medi-Cal que con un seguro privado. Algo prácticamente impensable para las afecciones médicas”, explicó Insel, que dirigió el Instituto Nacional de Salud Mental de 2002 a 2015. “Nunca permitiríamos esto para enfermedades cardíacas o cáncer”.

Cathryn Donaldson, vocera de America’s Health Insurance Plans, el principal grupo de la industria, dijo que las aseguradoras trabajan con diligencia para cumplir con la ley federal de paridad. Pero la escasez nacional de proveedores de salud mental, junto con los muchos médicos que no quieren participar en las redes de seguros, contribuyen a que más pacientes necesiten salir de la red para recibir atención, aseguró.

“Los proveedores de seguros de salud evalúan regularmente la idoneidad de sus redes de proveedores para que los pacientes cuenten con acceso adecuado a la atención de salud mental, al tiempo que se mide el impacto para mejorar los resultados de los pacientes”, escribió Donaldson en un correo electrónico.

Michael Thompson, presidente y CEO de la National Alliance of Healthcare Purchaser Coalitions, dijo que el informe Milliman confirma lo que ha escuchado de los empleadores.

“Es una situación que les supera. Cuando su gente trata de conseguir citas con psiquiatras de la red, ni siquiera les devuelven la llamada”.

Cuando los empleadores seleccionan un plan para los trabajadores, suelen considerar si la red será la adecuada, señaló Thompson. Pero a menudo se trata de “redes fantasmas” de proveedores que ya no aceptan el seguro o no aceptan nuevos pacientes. “¿Qué pasa cuando compras un producto inadecuado?”, se preguntó.

Quienes sufren las consecuencias son los pacientes y sus familias. En 2017, Terresa Humphries-Wadsworth llevó a su hijo de 14 años a una sala de emergencias en su ciudad natal de Cody, Wyoming, porque hablaba de suicidio. El personal lo envió al hospital más cercano con una unidad psiquiátrica. Estaba a 100 millas de distancia, en Montana. Su hijo estuvo internado 10 días hasta que Humphries-Wadsworth supo que el hospital estaba fuera de la red. La institución más cercana, dentro de la red, quedaba a 200 millas de su casa.

La familia enfrentó $110,000 en gastos por dos visitas como paciente y tratamiento de internación. Negociaron la cantidad con el hospital y una agencia de cobros, y luego pidieron préstamos para pagarla, contó.

Poco antes, cuando su hijo desarrolló diabetes, sabía que la aseguradora pagaría por el tratamiento, dijo Humphries-Wadsworth. “¿Cómo es posible que su salud mental, que podía llevarle a la muerte, no esté cubierta de la misma manera que el cuidado de su diabetes? ¿Por qué no se les trata igual?”

El ex legislador Patrick Kennedy, quien patrocinó la ley federal de paridad y ahora dirige el Kennedy Forum, enfocado en implementar la ley, dijo que la solución es clara: “Cuando las aseguradoras hagan que el pago por las enfermedades mentales sea igual que el de cualquier otra enfermedad, conseguiremos que las personas tengan acceso al tratamiento que necesitan”.

Después de la publicación del informe Milliman, el Kennedy Forum y otras organizaciones de salud mental al Presidente del Comité de Energía y Comercio de la Cámara de Representantes, Frank Pallone, demócrata de New Jersey, y al Presidente del Comité de Educación y Trabajo de la Cámara de Representantes, Bobby Scott, demócrata de Virginia, solicitando audiencias sobre la paridad.

Meiram Bendat, un abogado de salud mental que ha presentado varias demandas de paridad, indicó que se necesita una aplicación más estricta por parte de los estados y del gobierno federal para asegurarles a los pacientes el acceso que la ley les garantiza.

“Sin multas sustanciales contra las aseguradoras, nada va a cambiar porque no hay incentivo para el cambio”, concluyó.

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“We made parity between mental health and physical health,” Biden told CNN’s Chris Cuomo. “It was a fundamental breakthrough in how we thought about how things should work.”

This gets at a health care issue that — as a federal appeals court weighs Obamacare’s constitutionality — is now particularly relevant. Did the ACA create equal coverage of mental and physical health?

We decided to investigate. We contacted the Biden campaign and never heard back.

But our own reporting shows that while Biden’s claim is mostly accurate concerning the health law’s provisions, its implementation has yet to trigger the systemwide changes necessary to achieve the goal of parity.

One Problem, Two Laws

The ACA, which became law in 2010, does include provisions meant to strengthen access to and insurance coverage of mental health care. But it wasn’t the first statute to take on this challenge.

Two years earlier, before Barack Obama became president, Congress passed the Mental Health Parity and Addiction Equity Act. It said that if insurance offered by large employers — an organization employing more than 50 people — included mental health benefits, it had to structure those benefits, as well as associated copayments or caps on visits, equal to — “at parity” with — physical health benefits.

A key thing to note, though, is that this 2008 law did not specifically mandate coverage of mental health services.

Obamacare went further by requiring most plans to cover mental health and substance abuse. And it extended the parity requirement beyond large-employer-sponsored coverage to plans offered by small employers and those bought on the individual market.

estimate that the ACA extended mental health benefits to 62 million people.

“It substantially expanded the reach of the parity law,” said Sherry Glied, a health economist and dean at New York University.

Both Glied and Richard Frank, a health economics professor at Harvard University, agreed that the first part of Biden’s claim checks out. The health law certainly brought in new standards for parity and expanded the rules already on the books. (Frank and Glied both served in the Obama administration.)

But the law also operates in tandem with the earlier legislation. One could reasonably question whether it constitutes a “fundamental breakthrough” or represents the next step in a broader trajectory.

Holes In The System

Perhaps more important, though, is the current state of parity. To be sure, the ACA’s requirements created a clear set of parity standards. In some respects, though, these standards exist on paper but don’t always play out in practice.

“It’s huge that the guaranteed protections are there,” said JoAnn Volk, a research professor at Georgetown University. “The challenges remain in delivering on them.”

That’s because some coverage inequities are easier to spot than others. If a health plan caps how many times you can see a psychiatrist but doesn’t do so for an allergist or oncologist, that’s a clear violation. If mental health care visits have higher coinsurance than do physical health visits, that’s also obviously illegal.

Evidence suggests those quantitative barriers are less common now than they were before the passage of these two laws. Those changes, Glied said, have most clearly benefited people with severe psychiatric conditions.

But other barriers remain — many of which are quite nuanced and therefore more difficult to spot and enforce.

For instance, health plans aren’t supposed to require prior authorization for a psychiatrist visit unless they also do so for a “comparable” physical health service. The problem, of course, is how the word “comparable” is defined and interpreted.

“Even if you’re not trying to exploit the ambiguities but are trying to do a good job, you still might get into some controversial situations where folks might disagree, and disagree on a legit basis,” Frank said.

And, both Frank and Glied noted, there are cases in which insurance plans might try to take advantage of those ambiguities.

Take, for instance, the question of “medical necessity.” Insurance plans can argue that a mental health service isn’t required for someone’s well-being. , even in the wake of the parity laws, that argument is used as an excuse to deny care, and that it is used more often for psychiatric cases than for, say, treating someone with diabetes or a hip injury.

These barriers more often affect people with less severe mental health conditions, but who still require care, Glied said.

States have amped up their enforcement, in part due to federal support, Volk said. But they often rely on reports from consumers who have experienced parity violations, which assumes people will realize their plan has broken the law.

And issues exist beyond parity. Research suggests that insurance networks still fall short when it comes to including an adequate or even robust panel of behavioral health providers who accept their coverage.

That’s in part because of distinctions in mental health care — whether someone specializes in cognitive behavioral therapy or talk therapy, for instance, or a psychiatrist’s age or gender or life experiences. Plus, many behavioral health specialists simply don’t take insurance.

Those issues, Frank said, come in part because of the distinct complexity of mental health coverage.

“Mental health is not just one thing — it’s a whole bunch of illnesses. You want people to get the care they need,” Frank said. That means that devising effective policy “is a balancing act.”

Our Ruling

Biden told CNN that the ACA “made parity between mental health and physical health,” describing that policy as a “fundamental breakthrough.”

It’s clear the 2010 law’s parity requirements had a major impact: 62 million people gaining coverage is nothing to sneeze at.

But the ACA wasn’t the first piece of legislation to take this issue on. And major issues remain when it comes to making sure insurance treats mental health needs the same way it does physical health ones.

Biden’s statement is accurate, but it would benefit from additional information. We rate it Mostly True.

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Pero, para la compañía de atención administrada que gerenciaba su plan de salud de Medicaid eso no era estar lo suficientemente enferma para recibir tratamiento. En 2017, le dijeron que tendría que pesar 10 libras menos, 5’ 7” y 90 libras, o ingresar a una unidad psiquiátrica.

“Recuerdo que pensé: ‘Voy a morir'”, recordó la residente de Las Cruces, en Nuevo Mexico.

Finalmente, Bacon, ahora de 35 años, se cambió a un plan que pagó por el tratamiento, aunque dijo que aún era tedioso obtener la aprobación de los servicios.

Muchos pacientes como Bacon tienen problemas para obtener cobertura para tratamientos de salud mental, aunque dos leyes federales fueron diseñadas para brindar paridad entre la cobertura de salud mental y física. Estudios recientes y un caso legal sugieren que siguen existiendo graves disparidades.

La Ìýde 2008 requirió que los planes de salud de grupos grandes que brindaban beneficios de salud mental pusieran esa cobertura en pie de igualdad con la salud física. Dos años después, la Ley de Cuidado de Salud a Bajo Precio (ACA) exigió que los planes de salud individuales y de grupos pequeños disponibles en los mercados de seguros a niveles comparables con los servicios médicos. (En 2016, las reglas de paridad se aplicaron a los planes , que cubren a la mayoría de las personas en ese programa de salud federal-estatal para residentes de bajos ingresos).

Las leyes han sido parcialmente exitosas. Las aseguradoras ya no pueden tener planes que cobren copagos y deducibles más altos por la atención de salud mental, ni pueden establecer límites anuales o de por vida sobre cuánto se pagará por esta atención. Pero los defensores de los pacientes dicen que las compañías de seguros todavía interpretan los reclamos de salud mental de manera más estricta.

“Las compañías de seguros pueden eludir fácilmente los mandatos de paridad de salud mental imponiendo estándares restrictivos de necesidad médica”, dijo Meiram Bendat, abogado que encabeza una demanda colectiva contra una subsidiaria de salud mental de UnitedHealthcare.

Un tribunal federal en marzo que alegaban que la aseguradora estaba deliberadamente obstaculizando los reclamos de salud mental. El juez del Tribunal de Distrito de los Estados Unidos para el Distrito Norte de California dictaminó que United Behavioral Health para el tratamiento de manera mucho más limitada que las normas médicas comunes, que cubren solo lo suficiente para estabilizar a los pacientes “al tiempo que ignoran el tratamiento efectivo de las condiciones subyacentes de los miembros”.

UnitedHealthcare trabaja para “garantizar que nuestros productos satisfagan las necesidades de nuestros miembros y cumplan con las leyes estatales y federales”, dijo la vocera Tracey Lempner.

Sin embargo, varios estudios han encontrado evidencia de disparidades en las decisiones de los aseguradores.

En febrero, investigadores de la informaron que las compañías de seguros privadas están pagando entre un 13% y un 14% menos por la atención de salud mental que Medicare.

Los propios datos de la industria de seguros muestran entre la cobertura de la atención física y mental en los hospitales y los centros de enfermería especializada. De acuerdo con los datos de pacientes hospitalizados reportados en febrero por el Health Care Cost Institute, durante los cinco años que finalizaron en 2017, el gasto de bolsillo en atención de salud mental para pacientes hospitalizados creció casi 13 veces más rápido que la atención de todos los pacientes. Aetna, Humana, UnitedHealthcare y Kaiser Permanente. (Kaiser Health News no está afiliada con Kaiser Permanente).

Y un informe de 2017 realizado por la firma actuarial Milliman encontró que una visita al consultorio de un terapeuta tiene cinco veces más probabilidades de estar fuera de la red y, por lo tanto, ser más costosa que una cita de atención primaria.

En este entorno, solo la mitad de los que han sido diagnosticados con depresión, ansiedad o trastorno por déficit de atención con hiperactividad reciben tratamiento, según una carta publicada en febrero en JAMA Pediatrics. Menos de 1 de cada 5 personas con adicciones y, en general, casi 6 de cada 10 personas con enfermedades mentales no reciben tratamiento ni medicamentos.

“Criterios erróneos”

El doctor Eric Plakun, director ejecutivo del Austen Riggs Center, un hospital psiquiátrico y programa residencial en Massachusetts, dijo que a menudo las aseguradoras están “utilizando criterios incorrectos” sobre lo que es médicamente necesario. Pagan lo suficiente para estabilizar la condición de un paciente, dijo, pero no lo suficiente para mejorar su enfermedad subyacente. Plakun fue uno de los expertos que testificaron en el caso ante el juez Spero en California.

Las aseguradoras dicen que reconocen la importancia de la cobertura de atención de salud mental y que están cumpliendo con la ley.

Cathryn Donaldson, portavoz del grupo comercial America’s Health Insurance Plans, dijo que la industria apoya la paridad, pero que también es más difícil demostrar cuándo se necesita tratamiento de salud mental.

El doctor Frederick Villars, quien revisa los reclamos de salud mental de Aetna, recuerda haber discutido con las aseguradoras para aprobar un tratamiento cuando ejercía como psiquiatra. Su equipo decide qué cubrir basándose en los estándares clínicos, dijo, y los proveedores molestos por una decisión de cobertura “son muy conscientes de cuáles son estas pautas”.

“No es un proceso agradable”, dijo, “pero es la única herramienta que existe para tratar de mantener los costos bajo control”.

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But that wasn’t sick enough for her Medicaid managed-care company to cover an inpatient treatment program. She was told in 2017 that she would have to weigh 10 pounds less — putting her at 5-foot-7 and 90 pounds — or be admitted to a psychiatric unit.

“I remember thinking, ‘I’m going to die,’” the Las Cruces, N.M., resident recalled recently.

Eventually, Bacon, now 35, switched to a plan that paid for treatment, although she said it was still tedious to get services approved.

Many patients like Bacon struggle to get insurance coverage for their mental health treatment, even though two federal laws were designed to bring parity between mental and physical health care coverage. Recent studies and a legal case suggest serious disparities remain.

The 2008 required large group health plans that provide benefits for mental health to put that coverage on an equal footing with physical health. Two years later, the Affordable Care Act required small-group and individual health plans sold on the insurance marketplaces and do that at levels comparable with medical services. (In 2016, parity rules managed-care plans, which cover the majority of people in that federal-state health program for low-income residents.)

The laws have been partially successful. Insurers can no longer write policies that charge higher copays and deductibles for mental health care, nor can they set annual or lifetime limits on how much they will pay for it. But patient advocates say insurance companies still interpret mental health claims more stringently.

“Insurance companies can easily circumvent mental health parity mandates by imposing restrictive standards of medical necessity,” said Meiram Bendat, a lawyer leading a class-action lawsuit against a mental health subsidiary of UnitedHealthcare.

In a closely watched ruling, a and patients alleging the insurer was deliberately shortchanging mental health claims. Chief Magistrate Judge that United Behavioral Health , covering only enough to stabilize patients “while ignoring the effective treatment of members’ underlying conditions.”

UnitedHealthcare works to “ensure our products meet the needs of our members and comply with state and federal law,” said spokeswoman Tracey Lempner.

Several studies, though, have found evidence of disparities in insurers’ decisions.

In February, researchers at the reported that private insurance companies are paying 13% to 14% less for mental health care than Medicare does.

The insurance industry’s own data shows a between coverage of mental and physical care in hospitals and skilled nursing facilities. For the five years ending in 2017, out-of-pocket spending on inpatient mental health care grew nearly 13 times faster than all inpatient care, according to inpatient data reported in February by the , a research group funded by the insurance companies Aetna, Humana, UnitedHealthcare and Kaiser Permanente. (Kaiser Health News is not affiliated with Kaiser Permanente.)

And a by the actuarial firm Milliman found that an office visit with a therapist is five times as likely to be out-of-network, and thus more expensive, than a primary care appointment.

In this environment, who have been diagnosed with depression, anxiety or attention deficit hyperactivity disorder receive treatment, in JAMA Pediatrics. with substance use disorder are treated and, overall, people with mental illness get no treatment or medication.

Amanda Bacon, who is still receiving care for her eating disorder, remembers fearing that she wouldn’t get treatment. She was at one point rushed to an emergency room for care, but after several days she was sent home, no closer to getting well.

Today, because of her disability, Bacon’s primary insurance is through Medicare, which has paid for treatment that her earlier Medicaid provider, Molina Healthcare, refused. She has been treated in four inpatient programs in the past two years — twice through Presbyterian Centennial Care, a Medicaid plan she switched to after Molina, and twice though her current Medicare plan. Bacon is also enrolled in a state-run Medicaid plan.

Molina said it could not comment on Bacon’s case. “Molina complies with mental health parity laws,” said spokeswoman Danielle Smith, and it “applies industry-recognized medical necessity criteria in any medical determinations affecting mental health.”

The ‘Wrong Criteria’Ìý

Dr. Eric Plakun, CEO of the Austen Riggs Center, a psychiatric hospital and residential program in Massachusetts, said that often insurers are “using the wrong criteria” for what makes something medically necessary. They pay enough to stabilize a patient’s condition, he said, but not enough to improve their underlying illness. Plakun was one of the experts who testified in the case before Judge Spero in California.

Insurers say they recognize the importance of mental health care coverage and that they are .

Cathryn Donaldson, a spokeswoman for the trade group America’s Health Insurance Plans, said that the industry supports parity but that it is also harder to prove when mental health treatment is needed.

Compared with medical and surgical care, the data and standards to measure mental health care “trail far behind.” She cited of Minnesota hospitals, where nearly one-fifth of the time patients spent in psychiatric units occurred after they were stabilized and ready to be discharged.

“Just like doctors use scientific evidence to determine the safest, most effective treatments,” insurers do the same to cover treatment “consistent with guidelines showing when and where it’s effective for patients,” Donaldson said.

Health plans commonly apply several controls for mental health care. The techniques are legal — unless they are applied more strictly for mental health care than medical care.

They often require patients to try cheaper options first, a strategy called “fail first.” Patients referred by their doctors to a residential program for opioid addiction, for example, might be denied by their insurers until they try, and fail, to improve at a less expensive part-time program.

Hiring doctors, nurses and pharmacists to review claims is another technique.

Dr. Frederick Villars, who reviews mental health claims for Aetna, remembers arguing with insurers to approve treatment when he was a practicing psychiatrist. His team decides what to cover based on clinical standards, he said, and providers upset about a coverage decision “are well aware of what these guidelines are.”

“It’s not a pleasant process,” he said, “but it’s the only tool that exists in this setting to try to keep costs under control.”

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That’s the conclusion of published Thursday by Milliman Inc., a national risk management and health care consulting company. The report was released by a coalition of mental health and addiction advocacy organizations.

Among the findings:

• In 2015, behavioral care was four to six times more likely to be provided out-of-network than medical or surgical care.
• Insurers pay primary care providers 20 percent more for the same types of care as they pay addiction and mental health care specialists, including psychiatrists.
• State statistics vary widely. In New Jersey, 45 percent of office visits for behavioral health care were out-of-network. In Washington D.C., the figure was 63 percent.

The researchers at Milliman examined two large national databases containing medical claims records from major insurers for PPOs — preferred provider organizations — covering nearly 42 million Americans in all 50 states and the District of Columbia from 2013 to 2015.

“I was surprised it was this bad. As someone who has worked on parity for 10-plus years, I thought we would have done better,” said Henry Harbin, former CEO of Magellan Health, a managed behavioral health care company. “This is a wake-up call for employers, regulators and the plans themselves that whatever they’re doing, they’re making it difficult for consumers to get treatment for all these illnesses. They’re failing miserably.”

The high proportion of out-of-network behavioral care means mental health and substance-abuse patients were far more likely to face the high out-of-pocket costs that can make treatment unaffordable, even for those with insurance.

In a statement issued with the report, the coalition of mental health groups, includingÌýMental Health America, the National Association on Mental Illness, and The Kennedy Forum, called on federal regulators, state agencies and employers to conduct random audits of insurers to make sure they are in compliance with the parity law.

Harbin, now a consultant on parity issues, said the report’s finding that mental health providers are paid less than primary care providers is a particular surprise. In nine states, including New Hampshire, Minnesota, Vermont, Maine and Massachusetts, payments were 50 percent higher for primary care providers when they provided mental health care.

Because of such low reimbursement rates, he said, mental health and substance abuse professionals are not willing to contract with insurers. The result is insurance plans with narrow behavioral health networks that do not include enough therapists and other caregivers to meet the demands of patients.

For years, insurers have maintained that they are making every effort to comply with the , which was intended to equalize coverage of mental health and other medical conditions. And previous research has found that they have gone a long way toward eliminating obvious discrepancies in coverage. Most insurers, for example, annual limits on the therapy visits that they will cover. Higher copayments and separate mental health deductibles have become less of a problem.

Still, discrepancies appear to continue in the more subtle ways that insurers deliver benefits, including the size of provider networks.

Kate Berry, a senior vice president at America’s Health Insurance Plans, the industry’s main trade group, said the real problem is the shortage of behavioral health clinicians.

“Health plans are working very hard to actively recruit providers” and offer telemedicine visits in shortage areas, said Berry. “But some behavioral health specialists opt not to participate in contracts with providers simply because they prefer to see patients who are able to pay out of their pocket and may not have the kind of severe needs that other patients have.”

“This is a challenge that no single stakeholder in the health care infrastructure can solve,” she added.

Carol McDaid, who runs the Parity Implementation Coalition, countered that insurers have been willing and able to solve provider shortages in other fields. When there was a shortage of gerontologists, for example, McDaid said, insurers simply increased the rates and more doctors joined the networks. “The plans have the capacity to do this; I just think the will hasn’t been there thus far,” she said.

The scarcity of therapists who accept insurance creates a care landscape that is difficult to navigate for some of the most vulnerable patients.

Ali Carlin, 28, said she used to see her therapist in Richmond, Va., every week, paying a copay of $25 per session. But in 2015, the therapist stopped accepting her insurance, and her rate jumped to $110 per session.

Carlin, who has both borderline personality disorder and addiction issues, said she called around to about 10 other providers, but she couldn’t find anyone who accepted her insurance and was taking new patients.

“It’s such a daunting experience for someone who has trouble maintaining their home and holding a job and friendships,” said Carlin. “It makes me feel like no one can help me, and I’m not good enough, and it’s not an attainable goal.”

In Virginia, the Milliman report found that 26 percent of behavioral health office visits were out-of-network — more than seven times more than for medical care.

With no alternative, Carlin stuck with her old therapist but must save up between sessions. She has just enough to cover a visit once every few months.

“I make $30,000 a year. I can’t afford an out-of-pocket therapist or psychiatrist,” said Carlin. “I just can’t afford it. I’m choosing groceries over a therapist.”

Angela Kimball, director of advocacy and public policy at the National Alliance on Mental Illness, said she worries many patients like Carlin simply forgo treatment entirely.

“One of the most common reasons people give of not getting mental health treatment is the cost. The other is not being able to find care,” she said. “It’s hurting people in every corner of this nation.”

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The ,Ìýpublished online this week by JAMA Oncology, found these so-called state “parity” laws have not uniformly reduced patients’ out-of-pocket spending.

The laws became popular in the past decade as pricey anti-cancer oral medications grew more common. They were intended to address the variation in what insurers expected patients to pay, depending on the form of chemo they received.

In many plans, oral anti-cancer drugs were placed in high cost-sharing tiers in patients’ prescriptionÌýcoverage. Drug infusions — which took place at a doctor’s office — were handled as an office visit and sometimes required minimal copayments.

The researchers analyzed health plan claims of 63,780 adult cancer patients younger than age 65. All lived in the 43 states and the District of Columbia that passed parity laws from 2008 to 2012.

KHN contributing columnist Michelle Andrews writes the series , which explores health care coverage and costs.

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They compared the use of oral anti-cancer medicines andÌýout-of-pocket spending between patients in two types of health plans: state-regulated plans and “self-funded” employer health plans. The employer plans pay workers’ claims directly and therefore are not subject to state parity laws. Just under half of the patients involved in the study had coverage through a self-funded plan.

They came to various conclusions.

First, “these laws have not consistently reduced out-of-pocket spending for orally administered anticancer medications,” they wrote. More broadly, they noted, while these parity laws offered many patients “modestly improved financial protection,” the laws alone “may be insufficient to ensure that patients are protected from high out-of-pocket medication costs.”

And the researchers were surprised and concerned by these findings.

“When you think about who would have been the target of the law, parity is intended to help people afford the cost of their treatment,” said Stacie Dusetzina, an assistant professor of pharmacy and public health at the University of North Carolina-Chapel Hill, who was the study’s lead author. “The most expensive fills got more expensive after parity. That’s concerning.”

Among their specific findings:

• The number of prescriptions requiring high out-of-pocket spending grew, despite parity laws. The proportion of prescriptions filled in plans subject to parity that cost more than $100 out-of-pocket per month increased from 8.4Ìýto 11.1Ìýpercent, the study found. That figure declined slightly for prescriptions in plans that weren’t subject to parity, from 12 to 11.7 percent.
• In plans subject to parity laws, the proportion of prescription fills for orally administered therapy without copayment increased from 15 to 53 percent, more than double the increase in plans not subject to parity. Those plans increased from 12 to 18 percent.
• Parity laws did not increase six-month total spending for users of any anti-cancer therapy or for users of oral anti-cancer therapy alone.

The researchers suggested that continuing growth in high-deductible plans and high coinsurance charges may have contributed to the rise in the number of patients with high out-of-pocket costs for cancer treatment, even in states that have parity laws.

The study also found that out-of-pocket spending on infused drugs, which are typically older and less expensive than oral anti-cancer therapies, remained stable during the study period and was unaffected by parity laws.

A federal law that would extend parity to the seven states that don’t have it has been proposed in the past, most recently in March. Such a law could also benefit people in self-funded plans that aren’t subject to state laws, as well as Medicare beneficiaries.

“A federal law would potentially provide a lot of benefit, because we do feel parity has a net benefit for patients,” Dusetzina said.

Update: This story was updated at 5:40 p.m. ET.Ìý

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The Senate voted 94-5Ìýto approve the act, which sailed through the House of Representatives last week. Although the 21st Century Cures Act has been championed as a way to speed up drug development, it also includes provisions aimed at improving mental health care for millions of Americans and fighting the opioid epidemic. Mental health advocates have described it as the most significant piece of mental health legislation since the 2008 law requiring equal insurance coverage for mental and physical health.

The new legislation places a strong emphasis on science, pushing federal agencies to fund only programs that are backed by solid research and to collect data on whether patients are actually helped. The bill strengthens laws mandating parity for mental and physical health care and includes grants to increase the number of psychologists and psychiatrists, who are in short supply across the country.

The bill, which combines mental health proposals from several lawmakers, also pushes states to provide early intervention for psychosis, a treatment program that has been hailed as one of the most promising mental health developments in decades.

“It is time to fix our brokenÌýmental health care system,” said Sen. Bill Cassidy, R-La., a physician whose mental health bill was folded into the 21st Century Cures Act.

Sen. Chris Murphy, D-Conn., who worked with Cassidy on the bill, said he hopes to alleviate the suffering of people with serious mental illness.

“I’d heard too many devastating stories of people struggling with serious mental illness and addiction whose lives were forever changed because they couldn’t get the care they need,” Murphy said. “I’d seen up close the heartbreak and frustration that families suffered trying to find care for a loved one —Ìýcare that seemed impossible to find and even harder to pay for.”

But Rep. Frank Pallone, D-N.J., said he’s concerned that proposed Republican changes to the health care system could undercut any progress made by the bill. Millions of Americans with mental illness could lose coverage if Congress repeals the Affordable Care Act or cuts spending on Medicaid, which pays for about 25Ìýpercent of all mental health care, he said.

“The benefits of the mental health bill will be far outweighed by the catastrophic harm caused to individuals with mental illness if the Republicans move forward with their radical plans to repeal the Affordable Care Act, block grant Medicaid and cut benefits for low-income individuals,” Pallone said.

Many mental health advocates celebrated the bill’s passage.

Ronald Honberg, national director of policy and legal affairs at the National Alliance on Mental Illness, called the bill’s mental health provisions “necessary and promising.” He said he appreciated the bill’s focus on “preventing the most horrific consequences of untreated mental illness,” including homelessness, incarceration and suicide.

The bill generally requires states to use at least 10Ìýpercent of their mental health block grants on early intervention for psychosis, using a model called coordinated specialty care, which provides a team of specialists to provide psychotherapy, medication, education and support for patients’ families, as well as services to help young people stay in school or their jobs. Research from the National Institutes of Health shows that people who receive this kind of care stay in treatment longer; have greater improvement in their symptoms, personal relationships and quality of life; and are more involved in work or school compared to people who receive standard care.

The bill also sets up a $5 million grant program to provideÌý, one of the most successful strategies for helping people with serious mental illnesses, such as schizophrenia. Like the early intervention program, assertive community treatment provides a team of professionals that isÌýon call 24 hours a day. The bill also expands a grant program for assisted outpatient treatment, which provides court-ordered care for people with serious mental illness who might otherwise not seek help.

Although the bill authorizes these grants, a future Congress would have to approve funding for the programs. “The fact that a program has been authorized is no guarantee that it will be funded,” Honberg said. “It’s a necessary first step.”

Mental health advocates will lobby for Congress to approve funding for the most critical programs, Honberg said.

While funding treatments for mental illness is expensive, “it’s more expensive to ignore it,” said Rep. Eddie Bernice Johnson, D-Texas, who co-sponsored mental health legislation in the House that folded into the 21st Century Cures Act.

Other sections of the bill, based on legislation introduced by Sen. John Cornyn, R-Texas, give communities more flexibility in how they use federal grants. For example, communities could use community policing grants to train law enforcement officers to deal with patients in the midst of a psychiatric crisis. Another provision would require the U.S. attorney general to create at least one drug and mental health court pilot program, which would aim to help people with mental illness or drug addiction receive treatment, rather than jail time, after committing minor offenses.

The legislation will help “those suffering from mental illness in the criminal justice system can begin to recover and get the help they need instead of just getting sicker and sicker,” Cornyn said. “This bill also encourages the creation of crisis intervention teams, so that our law enforcement officers and first responders can know how to deescalate dangerous confrontations. This is about finding ways to help the mentally ill individual get help while keeping the community safe at the same time.”

The mental health provisions have been scaled back significantly since they were first introduced.

Many health professionals misunderstand HIPAA, refusing to listen to the families of patients who are too disabled by psychosis to provide key details of their medical history, said Rep. Tim Murphy, R-Pa., who first introduced the House bill in 2013 in response to the shootings at Sandy Hook Elementary School in Newtown, Conn.

Some advocates for the disabled objected to that change, however, arguing that patient privacy is essential, and that people might avoid care if they believe their doctors might disclose confidential information.

The new bill instructs the secretary of the Department of Health and Human Services to clarify when doctors can share patients’ medical information with family caregivers, as well as educate health care providers about what the law actually says.

“It’s a step in the right direction,” Honberg said. “There is so much misinformation about HIPAA. It’s one of the most mischaracterized laws out there.”

The bill also aims to better coordinate mental health care. Although eight federal agencies today fund 112 programs that provide mental health care, these agenciesÌýÌýto make sure patients get the help they need and to avoid duplicating services, said Tim Murphy.

The bill would make structural changes to the way federal agencies provide mental health services.

• A new committee would link leaders of key agencies involved in mental health care, such as the Department of Veterans Affairs, the Department of Justice and the Substance Abuse and Mental Health Services Administration, or SAMHSA.
• A new position —Ìýthe assistant secretary for Mental Health and Substance Use —Ìýwould oversee SAMHSA and disseminate the most successful approaches to treating mental illness.
• An advisory board, the National Mental Health and Substance Use Policy Laboratory, would also analyze treatments and services to help decide which ones should be expanded.

Chris Murphy said he wishes the final bill had includedÌýmore resources forÌýoutpatient mental health care, as well as inpatient hospital bills for people in psychiatric crisis. He also said the current bill provides a starting point but that he hopes Congress will continue working to improve mental health care in its next session.

“This doesn’t solve all the problems in the mental health system,” said Chris Murphy, noting that Congress may still need to change the HIPAA law to allow families to better care for people with mental illness. “We may still have to look at this down the line.”

KHN’s coverage of prescription drug development, costs and pricing is supported in part by the .

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