On Sept. 26, the FDA approved the first truly new antipsychotic in decades: Cobenfy. In clinical trials, it didn’t cause certain side effects that traditionally interfere with medication adherence, including weight gain, lethargy, and movement disorders.
I have schizoaffective disorder, bipolar type — a combination of schizophrenia and bipolar disorder — and I agree that this is a monumental development for my community. Historically, powerful people rarely invest in new medications for marginalized populations like those with schizophrenia. When it happens, it feels like the system is finally listening to us, acknowledging our quality of life matters.
And schizophrenia medications’ devastating side effects really can hurt quality of life. When medication caused rapid weight gain, I was already struggling with overwhelming self-loathing from a stigmatized diagnosis. I abandoned my medication, triggering flare-ups affecting relationships and work.
Still, if my psychiatrist recommended I try Cobenfy, I would hesitate. I just don’t trust the health care system, including pharmaceutical companies.
Among my community, I’m not alone. A 2012 study found 50% of people with schizophrenia don’t take their prescribed medication, and it’s not just because of side effects. A 2020 research review found we disengage with treatment in part because we don’t trust health care.
Don’t get me wrong — I owe my life to health care. Though I resisted, involuntary treatment saved me from suicide. And despite deep flaws in my care, I never would have gotten my condition under control without medication.
But the mental health care system also abused and traumatized me, and the people in that system rarely seem interested in hearing about negative experiences. When I wanted to discuss illegal psychiatric abuse, a pharma-funded nonprofit organization’s board member said, “If you tell that story, people will think involuntary treatment is always like that.” Similarly, if I complain about medication side effects, others often say I should be grateful.
It makes sense that people just want me to talk about the good, to inspire others to seek treatment. But I want to tell both sides of my story. I can’t trust an industry that doesn’t seem to listen when we’re honest about our treatment.
The U.S. has a dark legacy of psychiatric abuse. For much of the 20th century, institutions like Willowbrook State School subjected patients to horrific conditions and nonconsensual experiments. Forced sterilizations continued into the late 1970s, disproportionately affecting women of color and those with psychiatric conditions. These abuses have left deep scars in our collective memory, reminding us health care systems haven’t always acted in our best interests.
Those facilities have been closed down, but abusive practices persist. Recently, a New York Times investigation of one of the nation’s leading psychiatric hospital chains found reports of rapes, assaults, filthy conditions, and patients held against their will even when they were not risks to themselves or others. These practices erode trust, making it harder for people like me to feel safe within these institutions.
You might think: This is all terrible, but what does it have to do with drug companies? But drug companies are critical to this system, and we have reasons to distrust them, too.
AstraZeneca has faced lawsuits over its antipsychotic Seroquel after allegedly failing to disclose serious side effects. Johnson and Johnson paid $2.2 billion in fines for marketing its antipsychotic Risperdal for unapproved purposes, including controlling dementia patients.
That “control” part is key.
Twenty years ago, the first modern long-acting injectable antipsychotic was also billed as a game-changer. Yet it remains underutilized, and adherence remains a challenge.
The manufacturer didn’t consider that monthly injections feel like coercion and control to many with schizophrenia. That was my reaction when my psychiatrist recommended I switch to a long-acting injectable after medication adherence issues caused five back-to-back hospitalizations. It took getting hit by a car during psychosis, cracking a front tooth down to the root, before I acquiesced.
Many dismiss my community’s distrust as paranoia, and I can understand that. I’ve experienced paranoia. But I’m solidly in recovery now, and when I look back at my experiences, I can separate my paranoid thinking from reality. I find that people without schizophrenia tend to overestimate the extent to which our distrust is rooted in paranoia. It’s certainly happened to me: When I complained about treatment in a hospital in 2019, the staff dismissed my accusations as delusions. I know they were not.
To be a psychiatric patient is to be unheard, to be told to be quiet and be grateful. As long as the psychiatric industry fails to take patients seriously, pharmaceutical companies will struggle to persuade us to try new antipsychotics. But they could earn our trust by elevating our voices at all stages of development and marketing.
I don’t know whether Bristol Myers Squibb involved us in developing Cobenfy. But I was disappointed that the company’s press release and social media announcement didn’t quote anyone with schizophrenia. Much of the press coverage, including articles in the Washington Post, Time, and ABC News, also excluded our perspectives.
This silence is deafening. When those most affected by a breakthrough are absent from the conversation, it signals our voices don’t matter. This means the health care industry’s fascination with our brains hits more like morbid curiosity than genuine empowerment.
It feels like no one in power wants to acknowledge the harsh realities of the psychiatric system. Instead, they tell us to listen to doctors and that medication is the only path to wellness. It’s infantilizing. Before I got sick, I was a successful Berkeley grad, and people cared about my opinions. Now, my views on the health care system fall on deaf ears.
I’m grateful that people like me now have more medication options. But my community and I will be more willing to consider something new when we feel like we have a full seat at the table.
Sally Littlefield is a mental health advocate and writer.
