Like so many Americans, Sylvia Tawse is no stranger to mental illness, which she describes as “woven into her family tapestry.” It’s a fact she made peace with years ago after deciding to live with honesty and empathy rather than shame and secrecy.
Nevertheless, when her son, an accomplished, nationally ranked extreme skier, experienced a psychotic break at the age of 15, her resolve was tested in ways she never thought possible.
{mosads}Now 23 years old, Sylvia’s son was recently hospitalized for the second time in three months due to acute psychosis. Upon discharge, he was prescribed an injectable medication that the insurance company promptly denied, falsely claiming it could only be administered in a hospital, not an outpatient setting.
Weeks passed and psychosis crept back in. The family had to hire an attorney and engage the state insurance commissioner in their fight for treatment. Even their doctor pursued appeals on their behalf. Finally, the insurance company approved the medication.
In this most recent struggle to secure help for her son, Sylvia lost days of work and countless nights of sleep. Ask any parent: the process takes a toll — mentally, physically and financially. For example, over the past seven years, Sylvia’s family has been forced to liquidate more than $240,000 of savings on residential recovery programs and therapy that their insurance company refused to cover.
Sylvia’s story has played out for countless families across the country, many of whom do not have savings to lean on. What happens to those parents, siblings and spouses who can’t afford to miss work and spend hours on the phone with insurance companies, state employees and medical professionals?
A recent report from the Centers for Disease Control and Prevention (CDC) reinforces the seriousness of our nation’s mental health crisis. Life expectancy is declining in a way we haven’t seen since World War. With more than 70,000 drug overdose deaths in 2017 and suicides increasing by 33 percent since 1999, the message is clear: People are not getting the care they need. And for many, it’s a simple matter of access.
When the Mental Health Parity and Addiction Equity Act, also known as the Federal Parity Law, passed in 2008, those of us who drafted and championed the bill knew that talking about mental health wasn’t enough — we needed to ensure access to care as well. Hence, the Federal Parity Law requires most 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. We hoped it would remove the barriers that families like Sylvia’s often face when trying to get help.
It has been 10 years since the law passed and, unfortunately, too many Americans are still being denied coverage for mental health and addiction treatment. The reason? A lack of enforcement.
As things stand, the responsibility to challenge inadequate systems of care and illegal denials falls on patients, who are typically unaware of the law or are in the middle of a personal crisis. This isn’t right. Or sustainable. The responsibility for mental health equity should lie with insurers, not with patients or their providers. Insurers should be held accountable for parity before plans are sold.
Sadly, the federal government missed an opportunity to address this in the 2018 SUPPORT for Patients and Communities Act. Measures that would have incentivized compliance with the Federal Parity Law — and given regulators the “teeth” they need to crack down on insurance companies that are in violation of the law — were left on the cutting room floor.
While the federal government still has a long way to go, more and more states are developing their own solutions to increase access to care for mental health and substance use disorders. Rhode Island, Delaware, Colorado, New York, Connecticut, New Jersey and Missouri have all either passed or advanced parity-centric bills. Colorado, New York and Texas have created special mental health and addiction ombuds offices for consumers and Illinois recently passed the nation’s strongest state parity law to date through SB1707, which increases transparency and accountability for health plans and state regulators.
Thanks to families like Sylvia’s who are open about their struggles, celebrities and public figures speaking up and the tireless work of advocacy groups across the nation, stigma around mental health and substance use disorders is fading. Still, words must turn into action. Now more than ever, we must unite in our efforts to bring transparency to a system that oppresses those with mental health and substance use disorders.
Sylvia now sees her family story as part of a “massive societal tapestry” — one that is not weak, but is strong and unyielding and woven with fiery resolve to get help for those who need it most. “This is our truth,” Sylvia says with grit and determination in her voice. “We won’t be denied.”
The demand for change will grow stronger. And we will fight, alongside American families, until true mental health equity is achieved.
Patrick J. Kennedy, former U.S. representative (D-R.I.) from 1995 to 2011, is the founder of The Kennedy Forum and co-author of the Federal Parity Law. The Kennedy Forum launched the Don’t Deny Me campaign in October to empower consumers to stand up for their parity rights. Jim Ramstad, former U.S. representative (R-Minn.) from 1991 to 2009, was a co-author of the Federal Parity Law. He is a former fellow of the Harvard Institute of Politics.