Turning tragedy into an advocacy success
However, it quickly became apparent there was more to getting treatment than met the eye. “We were certainly naïve about insurance companies’ desires to spend as little as possible on the treatment of [substance use disorder], including strict limitations on what is ‘medically necessary,’” said Bill. “Getting clear, direct information from insurers is difficult.” This lack of transparency was made all the clearer when, a mere four days after Beth Israel Hospital deemed a request for inpatient detox “not medically necessary,” William accidentally overdosed. On December 2012, shortly before his 24th birthday, he entered a persistent vegetative state. When it became clear that he would never fully regain consciousness, Williams and Head made the difficult decision to remove him from life support.
Following the death of their son, Williams and Head sued their insurance company and became tireless advocates in the fight to enforce the Mental Health Parity and Addiction Equity Act, which requires most insurance plans to cover mental health and substance use disorder (SUD) treatment in the same way they cover treatment for any other disease. Although the Parity Act has been law for a decade, it has not been fully implemented or enforced, resulting in countless people being denied the coverage they need — including Will.
Failure to enforce the Parity Act at the state and federal level, Williams and Head believe, was responsible for their son’s death. At the time Will was denied treatment, the family was not aware of the Act. Had it been both invoked and properly enforced, what could have happened to their son? For the family, it’s an impossible question. Bill has asked, “Would obtaining parity intervention immediately upon his denial have resulted in a life-saving admission within four days? Could an appeal or complaint have been successfully resolved in that short time? We’ll never know.”
Galvanized by the needlessness of their son’s death, Williams and Head were instrumental in uncovering a pattern of failure to enforce the Parity Act. Through the Parity at 10 campaign, the Partnership helped leverage Will’s story to call on state regulators to fully implement the Parity Act and ensure that insurance plans comply with the law before they are sold. Further, in New York State, the Parity at 10 campaign successfully secured an ombudsman for behavioral health. This department is responsible for protecting consumers and investigating insurance complaints about potential violations of the Parity Act. Its establishment is a tremendous success, as local and state officials have said they care about this issue, but don’t receive any complaints from consumers. Having a dedicated bureau through which to funnel complaints will alert elected officials to the problem and further legitimize its scope.
Although the family may never know what could have happened to Will had the Parity Act been invoked, their work demonstrates how essential bureaucratic changes that can be implemented in order to save lives. “PUBLICIZE and EDUCATE about Parity,” Williams and Head say. “We need a rapid response mechanism for Parity violations so that SUD sufferers aren’t dead before their complaints are resolved. People need treatment at the time they ask for it.”