Innovation Puts Patients Back in Charge

May 6, 2022

By Robert Fekete, MD

Getting tardive dyskinesia is devastating for mental health patients who are getting back on track.

The movement disorder, often recognized by its involuntary movements, can emerge as a result of taking neuroleptics. These dopamine blocking drugs have been the go-to for treating certain psychiatric conditions. Mental stability, however, comes at a price for some patients.

Tardive dyskinesia can cause excessive blinking, grimacing and tongue protruding. Involuntary movements of the neck, trunk, arms, fingers and legs are possible. This lack of control, in turn, causes social anxiety. It can lead to avoidance – not just of public activities, but isolation from family and friends.

For years, there was nothing specifically designated to treat tardive dyskinesia, so doctors like me tried to help patients using what was available. But some of those medications had intolerable side effects, so patients did not want to use them. And all of them were off label, which meant insurance coverage for them was inconsistent.

In the end, many patients accepted living with untreated tardive dyskinesia – as unpleasant as it was.

Better Options Now

About five years ago, two novel VMAT2 inhibitors became available. Scientifically speaking, these medications reduce the release of dopamine, which impacts neurologic and physiologic functioning. In short, VMAT2 inhibitors tell the brain to stop – stop tongue thrusting, stop twitching, stop finger tapping.

This new type of medication calms the symptoms of tardive dyskinesia. I have seen patients who had uncontrolled neck movements, back arching and flailing arm movements, for example, that were uncomfortable and embarrassing. I am delighted that my patients’ movements have become more controlled, and they have more confidence after using VMAT2 inhibitors.

TD Awareness Week

Tardive Dyskinesia Awareness Week, May 1-7, is an annual observance aimed at increasing awareness and support for people living with the condition. It is also an opportune time to recognize breakthroughs in symptom management and advocate for patients’ access to them.

For most patients, VMAT2 inhibitors are a good option now and, given the course of innovation, I am optimistic there will be even more options in the coming years. Each of these has the potential to help patients with tardive dyskinesia.

Robert Fekete, MD, is a neurologist in New York state and a member of the Alliance for Patient Access’ Neurological Disease Working Group. He has consulted for Teva and Neurocrine Biosciences.

Breakthrough, an IfPA blog series, offers health care providers a voice in the ever-growing conversation about innovation and value.

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