In November, the season five premiere of the popular Netflix show Patriot Act tackled the complex issue of insurance coverage for mental health and addiction treatment in America. Host (and comedian) Hasan Minhaj educated viewers on the 2008 Mental Health Parity and Addiction Equality Act (Federal Parity Law)—co-sponsored by The Kennedy Forum founder and former U.S. Congressman, Patrick J. Kennedy—and humorously explored some of the more common ways insurers have been known to violate the law. Minhaj ultimately directed viewers to ParityRegistry.org, a Kennedy Forum website where consumers can learn to file appeals and register complaints against their health plan for unlawful denials of coverage for mental health and addiction treatment services.
In just the first thirty days after the episode aired on November 9, 2019, we received hundreds of new Parity Registry complaints. This flood of entries underscores what we already know to be true: insurers are still not being held accountable under the law.
When someone files a complaint with the Parity Registry, they are asked to identify why their insurer denied coverage (if given a reason). They are also asked to explain their unique situation.
We feel that the collection of anonymous submissions below does a good job of illustrating common reasons for denial cited by insurers, potential parity violations that may have occurred, and powerful personal accounts of the impact felt.
We are sharing this information in hopes that other readers will recognize such injustices and feel empowered to share their stories as well.
As Patrick J. Kennedy points out, “We must break the silence and bring transparency to a system that oppresses those with mental health and substance use disorders.”
Barrier to getting care: My copay or deductible for mental health or substance use disorder treatment was too high.
Possible parity violation: Separate deductible or higher copays for behavioral health services.
Personal Story: “The deductible for mental health care is separate from physical health care and is twice as high.”
Barrier to getting care: My insurer would only cover part of my recommended treatment.
Possible parity violation: Limits on how many days a patient can stay in a treatment facility or how many times they can see a behavioral health provider.
Personal Story: “I could not get counseling more than 6 times a year without paying significant co-pay. After 12 sessions I have to pay the [entirety] of the cost. Because I could not afford it, I had to stop seeing my therapist and put myself at great danger. I felt alone against the institution and stuck in an endless maze of administrative dead ends. This hell of an unfruitful process had and still does impact my mental progress.”
Barrier to getting care: My provider/facility was out-of-network.
Possible parity violation: Narrow networks of behavioral health providers.
Personal Story: “I currently have a plan that offers a very limited choice of psychiatrists. We have to pay out of pocket to get adequate mental health treatment. The company thinks it’s enough to offer mental health benefits without having a sufficient amount of providers that accept their insurance.”
Barrier to getting care: The cost of my medication was too high.
Possible parity violation: Higher costs for prescription medication for behavioral health treatment.
Personal Story: “My visits to my therapist are somewhat covered, but my prescription drug is barely covered…It currently costs about $250.”
Barrier to getting care: My insurer refuses to cover needed treatment.
Possible parity violation: Requirements for prior authorization before starting and/or continuing treatment.
Personal Story: “My mental health provider has been attempting to get my prescription prior- authorized—the insurance has denied it every time. They are refusing unless I go back on medicines that I have had negative reactions to before. I have even had a genetic test done that shows a genetic predisposition to reactions from these medicines that they are insisting I need to attempt again. I have either had to pay out of pocket, go without my needed medicine, or try medicine that causes me to have reactions that will affect my ability to work and function.”
Barrier to getting care: My insurer claims that the care I am seeking is not medically necessary.
Possible parity violation: Using flawed clinical review criteria not consistent with generally accepted standards of care.
Personal Story: “My 13-year-old daughter was a self-harmer for 1 year before she took her own life…I was told I couldn’t put her in a residential facility unless she attempted suicide 10 times or [was] in a unit 10 times. She took her life in 2015 after our system failed her…How can you tell a suicidal person they can’t get help unless they attempt suicide 10 times? Nobody attempts 10 times before they actually succeed.”
Barrier to getting care: My insurer claims that the care I am seeking is not medically necessary.
Possible parity violation: Using flawed clinical review criteria not consistent with generally accepted standards of care.
Personal Story: “My daughter was sent to the emergency room for self-harm and suicidal intentions…After 7 days, they transferred her to the trauma side for help with her PTSD. After 2 days in the trauma unit, [our insurer] refused more treatment saying it was not medically necessary. They said they would authorize an outpatient program (which is a 4 week program). After 2 days in the outpatient program, they decided care was not medically necessary. Now she has NO mental health care whatsoever. This “doctor” at the insurance company has denied her coverage at this hospital several times this year, even though my daughter’s real doctors insist she needs it. We’ve been through this same cycle many times.”
In addition to potential parity violations, an overwhelming number of complaints describe an inability to access care at all, due to wait times, geographic limitations, providers who no longer accept new patients, and “ghost networks.” This is symptomatic of insurers’ grossly inadequate mental health and addiction networks, which result in patients having to go out of network more than five times more often for behavioral health care than for physical health care, according to the actuarial firm Milliman. These narrow networks and the inadequate number of individuals choosing to be mental health and addiction providers are significantly driven by inequitable insurance reimbursement, which itself can be a parity violation.
Clearly, we need stronger enforcement of federal (and state) parity laws to hold insurers accountable for covering illnesses of the brain no more restrictively than illnesses of the body and for equitably reimbursing behavioral health providers. Advocacy groups across the country, including The Kennedy Forum, are fighting to advance legislation that will do just that. For example, H.R.2848 – Parity Enforcement Act of 2019.
In the meantime, consumers should continue to report and appeal illegal denials of coverage so we can shine a bright light on this critical issue that affects so many. Without data and real-life accounts of how our broken system currently operates, advocacy efforts are simply not as strong. Join the fight and make your voice heard!
Parity Resources from The Kennedy Forum
DontDenyMe.org
A website that educates consumers and providers about patient rights under the Federal Parity Law, which requires insurers to cover illnesses of the brain, such as depression or addiction, no more restrictively than illnesses of the body, such as diabetes or cancer. Providers are encouraged to download and print posters, brochures, and infographics to use in patient settings.
ParityRegistry.org
A website where consumers can learn to file appeals—after wrongful denials of insurance coverage for mental health and addiction treatment services—and register complaints against their health plans.
ParityTrack.org
A website where policymakers and others can track legislative, regulatory, and legal parity activities in all 50 states and at the federal level to monitor implementation and best practices.
