MHA Statement on the Institute for Clinical and Economic Review’s Final Report on Tardive Dyskinesia

Mental Health America (MHA) congratulates the Institute for Clinical and Economic Review (ICER) on the release of its final report, Vesicular Monoamine Transporter 2 Inhibitors for Tardive Dyskinesia: Effectiveness and Value, and thanks ICER for engaging MHA throughout the process.

Tardive dyskinesia (TD) presents as a side-effect of antipsychotic medications, causing repetitive and involuntary movements, such as frowning, tongue sticking out, lip smacking, puckering and pursing of the lips, and rapid eye blinking. TD is an understudied and often underappreciated condition but can make it harder to succeed in job interviews, make new friends, or otherwise participate in community life – posing a serious obstacle in the path to recovery.

To date, there have been very limited treatment options for individuals experiencing TD, but the first wave of new therapies are being developed and taken to market. ICER initiated a review of the cost-effectiveness of the new medications to add a quantitative perspective to the conversation around efficacy and value. Throughout the process, MHA requested that ICER adapt parts of its value framework for the realities of mental health - that effective and early intervention could mean the difference between someone experiencing disability and needing Medicaid and Medicare or being able to work and buy insurance through their employer, or that the availability of new treatments to address side-effects could mean that providers feel comfortable acting earlier and more aggressively to treat the most challenging mental health conditions, ensuring that people can stay in school or in work, rather than waiting until someone is in crisis. MHA appreciates the lack of available evidence makes these calculations challenging in the context of TD, and looks forward to working with ICER to make such scenarios a possible part of its framework in the future.

ICER found that the evidence of effectiveness for the new TD treatments were “promising, but inconclusive.” MHA hopes this will be the start of a conversation about investing in research, development, and access to therapies for the treatment of TD – an incredibly challenging condition that is often confused with mental illness by laypeople, and that adds to the discrimination faced by people with serious mental illnesses. MHA looks forward to working with the stakeholders to generate additional evidence and ultimately ensure that individuals get access to effective treatments for TD, after having gone so many years without any meaningful options.