As a pediatrician whose patients and their families sometimes develop serious mental illnesses, and as a family member and caregiver, I can tell you the word “serious” is a euphemism, a polite understatement. I have a friend with stage IV cancer who has received life-saving treatment for many years—she is able to work, care for her family, and enjoy her life despite the fatigue and side effects. If she were to stop treatment she would likely die quickly. Her illness is serious. Treated, illnesses like schizophrenia and bipolar with psychosis settle to the level of serious. They are not really “mental” either, which sounds as if we are speaking about nebulous, abstract, idea-based problems —they are brain illnesses. Let’s call them what they are. Untreated, these brain illnesses are not serious—they are devastating, catastrophic, and deadly. Those who do not die wind up far too often in prisons unprepared to care for them or homeless, living—if one can call it living—under bridges and in doorways.
Brain illness care has long been the red-headed stepchild of medicine—barely funded when required by law, and far too often, not even then. For decades, advocates have worked towards parity, the equal treatment of brain and other body illnesses by insurance, only to witness seemingly solid legislation morph into a sieve of loopholes. Anyone who has watched can testify to the creative genius of private insurers, against whom no legal barrier to patient abuse has so far succeeded. Prohibit annual or lifetime payment caps and they limit the number of visits allowed. Require inpatient hospital coverage and see new categories like “partial hospitalization” that don’t count. Require outpatient coverage and get provider networks at payment rates so low hardly any doctors sign up. Will the Affordable Care Act (ACA) along with the Mental Health Parity and Addiction Equity Act (MHPAEA) of 2008 do any better? My short answer is “no.” For the long version, read on.
Under the recently released final rules for parity, effective for plan years that begin after July 1, 2014, most private insurances (except for grandfathered small group policies) will have to provide some brain illness coverage. The exact services covered will vary between states, because of the way the Department of Health and Human Services interpreted the ACA. By making Essential Health Benefits depend on prior insurance offerings in each state, the word “essential” is stripped of any semblance of ordinary meaning and varies when we step over the state line between Alabama and Georgia.
The final parity rules removed an earlier stipulation for insurers to use clinically accepted standards of care for brain illness treatment authorization. If a treatment is recommended by national experts and advised by your own doctor, the insurer does not have to use the same guidelines and can deny payment. Although plans are supposed to use similar methods to develop provider panels for psychiatric and other medical care, the parity rule discussion says disparate results in the composition of those panels don’t prove there is a problem. So if your plan does not include sufficient psychiatrists on the panel accepting new patients (a common issue) but has plenty of other types of specialists, you may not have grounds to protest if the insurer can figure out an excuse. If insurers are only providing certain elements of brain illness treatment in order to satisfy the ACA, they don’t also have to meet the full requirements of parity otherwise.
There may be some relief to states and patients for coverage of court-ordered brain illness treatment, because insurances can’t restrict such coverage if they don’t restrict it for other court-ordered medical services. For example, if a court-ordered blood transfusion for a child would be covered, then services provided during a court-ordered psychiatric hold should be covered as well. I am uncertain if insurers will be permitted to exclude the entire category of all court-ordered treatments to evade this element—I do not see reference to this in the ACA itself. If that is an available loophole, we will certainly see it used.
If insurers cover a certain type of care for medical illnesses, such as outpatient rehabilitation or residential treatment, they must now also cover it for psychiatric illnesses. That sounds good on the face of it— funding is greatly needed for day treatment programs and other levels of supervised care. Unfortunately, the option is still wide open for insurers to deny or limit authorization for such services based on… well, whatever they want to base it on, absent any requirement for using accepted standards of care. I expect we will have services mainly in theory, denied in practice by some set of arbitrary criteria.
In a particularly odd arrangement, insurers that can demonstrate a 2% or more increase in costs during the first year of parity can request exemption from parity the next year, and afterwards a 1% cost rise gets them a one year exemption. Potentially, subscribers could have brain illness coverage every other year. If my friend with cancer got her chemotherapy only every other year, what do you suppose would have happened by now?
The point-of-service cost-sharing barriers are substantial under the ACA. For those with lower incomes who don’t qualify for Medicaid and have subsidized plans, a $30 co-pay might as well be $300 if they don’t have it. A $2000 deductible or out of pocket limit? Unimaginably out of reach. People affected by serious brain illness are more likely to have lower incomes and thus likely to forgo necessary care at a lower level of up-front cost.
Some with serious brain illnesses who have not been able to get private insurance due to their pre-existing conditions may now get private policies. Those under 26 can now stay on parent plans—but will these newly covered persons have access to care? Having an insurance card is not at all the same thing as being able to get treatment. At the onset of illness, many already had private insurance that failed to meet their needs. I have seen no improvement at all in access for my privately insured patients to appropriate care for brain illnesses.
For long-standing serious brain illnesses, partly because treatment barriers and gaps have contributed to loss of function, public insurance is common—either Medicaid, for those with SSI Disability, or Medicare for those with SSDI. I do not see the kind of changes in either of these programs that would be needed to prevent care gaps. The “donut hole” for Medicare prescription coverage is closing, but there remains substantial out of pocket cost. There is no parity requirement for payment of psychiatrists in Medicare and payment is low compared to other outpatient services. Consequently, finding a psychiatrist who accepts Medicare isn’t easy. In my city, the only option is the county Mental Health Center, already overloaded.
Medicaid appears to be affected by parity only if it is administered through Managed Care Organizations or Alternative Benefit Plans. The Medicaid Expansion, in states that adopt it, will add some with brain illnesses who have not been able to get disability benefits. The main barriers to care for those with Medicaid are funding, generally severely inadequate at the state level, and commitment laws that hinder timely treatment when the patient is sick enough to be unaware of the illness (anosognosia). When it comes to strokes and heart attacks, we hear “time is tissue”—the rush is on to treat patients urgently, conscious and asking for help or not. With serious psychosis, just as damaging to brain tissue if untreated, we bizarrely decide the ill person, unable to make rational decisions, does not want help. Staffing at Mental Health Centers is limited, wait times are lengthy, and necessary community supports are minimal to absent. There is no move towards building a serious brain illness treatment infrastructure in the ACA. If care is affordable but not available, patients are left behind just the same.
Although Medicaid pays for residential care of those with intellectual disabilities, there is an “IMD exclusion” prohibiting federal matching funds for care in a psychiatric hospital. This has helped cause deteriorating service quality at state hospitals and made it appear cheaper for states to put those with serious brain illness in jail than to hospitalize them. The ACA includes a “demonstration project” to pay private psychiatric hospitals with Medicaid funds to provide emergency services in some states. Because private hospitals have higher administrative overhead, proportionately less money may be used for actual patient care than in lower overhead public facilities. The demonstration project funds are not available for public psychiatric hospitals, although the money is public in origin. Why not use those funds to improve state hospital care and coordinated transition of care to communities?
Because milder brain illnesses are more common and seem to garner more popular sympathy than serious cases, I am also concerned about wise use of scarce resources. The ACA does nothing to ensure that priority will be given to those most severely affected, both in terms of initiating treatment and maintaining it. The spectrum of brain illness is broad, just as for other medical illness. It is being absurdly stretched to include non-illness ordinary frustrations of life so providers can be paid for their preferred “patients.”
I would not begrudge a person with a mild brain illness appropriate treatment any more than I would a person with a mild asthma flare-up. Mild problems can become serious without good care. At the same time, I would not leave a person in my waiting room gasping for breath to see one with a head cold. I would not stop insulin for my patients with diabetes just because they “look good right now” in order to counsel basically healthy people on how to eat more vegetables. And that is the sort of mindlessness happening in brain illness care right now—priority is given to the worried well.
Although we have no cure for the most devastating brain illnesses, we most certainly do have multiple proven interventions that can, much of the time, bring those affected to the level of the merely seriously ill. Treatment reduces the risk of relapse and allows many to have meaningful lives in their communities. Just as with cancer, brain illness can sometimes worsen even during treatment so that the care plan needs to be adjusted—this can only be effective when care is continuous and frequent enough to catch the early signs of trouble. Each relapse not treated quickly and skillfully may cause cumulative, permanent, unrepairable damage to the brain. Treatment gaps in a system full of cost and access barriers can mean death.
Any reform of healthcare that fails to address the needs of people with serious brain illnesses, including their critical need for continuous care with no loopholes or gaps, is a sham, a travesty, and a parody of reform. I am weary of seeing tragic headlines about those we have failed, when I know we already have the knowledge and tools to do better. My grade for the ACA on brain illness? Fail.