Manufacturer of Tardive Dyskinesia (TD) Drugs Finds TD Emotionally Devastating

“Patients expressed feeling unaccepted by society or uncomfortable in their own skin… A few indicated that they would rather be dead than have tardive dyskinesia.”

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Tardive dyskinesia (TD) is a common adverse effect of antipsychotic drugs. People with TD have repetitive, involuntary movements, such as blinking, grimacing, and thrusting their tongues uncontrollably. Now, new research shows just how horrible this experience can be for patients.

The researchers, led by Mallory Farrar, used artificial intelligence (AI) to scan the internet for comments about TD and then sort those comments into themes and determine whether the comments were positive, neutral, or negative. The study was published in BMC Psychiatry.

The study was funded and carried out by Neurocrine Biosciences, a company that makes the drug Ingrezza (valbenazine) for treating TD. All of the authors were employees of Neurocrine, and a disclaimer on the paper states that “The study sponsor was involved in study design, as well as in the analysis and interpretation of data.”

Farrar and the other researchers found that 64% of the comments were negative, 33% were neutral, and 3% were positive. (The paper does not include the actual text of the comments, and the way the AI made this distinction is unclear.)

The researchers found three main themes: anger, insecurity, and symptoms. The theme of anger was represented by the patients’ frustration and rage at the negative impact of TD on their lives.

The theme of insecurity involved how TD made people feel “ugly, weird, or self-conscious”:

“Patients expressed feeling unaccepted by society or uncomfortable in their own skin. Some feared being judged by others or being asked about their twitching. A few indicated that they would rather be dead than have TD.”

Finally, the theme of “symptoms” was used for posts that discussed specific aspects of TD or encouraged others to discuss their symptoms.

There is also an implication for informed consent, as a related survey by Ipsos (for Neurocrine) found that most patients are not even told that TD is a common adverse effect of antipsychotics. The survey found that “58% of patients were not aware that antipsychotics can cause involuntary movements or TD.”

Initially, “second-generation” antipsychotic drugs were marketed as being less likely to cause tardive dyskinesia. However, a recent study found that at least 20% of people on current antipsychotics still develop the disorder. Another study found that the rates of TD have remained unchanged since the 1980s, despite the increasing use of second-generation drugs.

Moreover, as MIA has reported, the market for antipsychotics continues to expand, especially to children and adolescents, which means that the prevalence of TD is only increasing as time goes on.

Worse, a study from 2014 demonstrated that most cases of TD are permanent, with only 1 in 8 returning to normal functioning after a diagnosis of TD.

The current study has several limitations. The researchers excluded Facebook posts and ended up with only 107 total comments about TD. It’s unclear how they ended up with so few comments, given the hundreds of thousands of patients who experience TD. The article also does not include any of the actual text comments, so readers cannot judge for themselves how well their AI sorted the data.

Finally, it is important to keep in mind that Neurocrine funded the study and had control over the methods and data analysis. In fact, the end of the article explicitly directs the reader to tell patients about Neurocrine’s website.

As MIA has reported, Neurocrine’s drug Ingrezza did not demonstrate much of a clinically meaningful benefit. It is no better than the generic drug tetrabenazine, which has been on the market since 2008.

Nonetheless, that has not curbed sales of the drug as a treatment for antipsychotic-induced brain damage. Since 2017, Neurocrine has paid top psychiatry speakers more than $1 million to promote Ingrezza. The drug made Neurocrine more than $1 billion from Medicaid and Medicare alone in its first two years on the market.

And now, in this article, Neurocrine employees are informing the public of another element of the devastating effects of TD.

 

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Farrar, M., Lundt, L., Franey, E., & Yonan, C. (2021). Patient perspective of tardive dyskinesia: Results from a social media listening study. BMC Psychiatry, 21(94). https://doi.org/10.1186/s12888-021-03074-9 (Link)

10 COMMENTS

  1. “Tardive dyskinesia (TD) is a common adverse effect of antipsychotic drugs …
    most patients are not even told that TD is a common adverse effect of antipsychotics.”

    No, quite to the contrary, when we develop such appalling symptoms, our psychiatrists lie to us and our families, claiming these symptoms could NOT be caused by their drugs.

    Prescribing, and especially coercing and force treating people, with the antipsychotics should be made illegal.

    Thanks, as always Peter, for honestly reporting on the systemic crimes of the psychiatrists, and their god, big Pharma.

    • How is manganese properly used, bcharris? Since I do have some TD – which started with a wiggly ankle awaking me, that has gone from that, to brain zaps and an entire wiggly body, awaking me from my sleep – as opposed to the TD going away with time. And I’ve been off the psych drugs for 12 years.

      Please do share your insights.

      • It’s probably best to start with a hair sample to see what your manganese levels actually are, because you want to start with larger amounts, which you’ll then decrease when your symptomology does, as excess manganese can cause the same symptoms as the drug- induced dyskinesias- best to see if there’s an orthomolecular practitioner in your neighborhood who knows what they’re doing.

  2. Instead of ongoing profiting from the damage they’ve manufactured, why not call for reparations? Restorative justice doesn’t call for more profits for those who assault fellow human beings, strategies that allow more justice that centers those harmed. AI and other electronic means perpetuate power over those of us constructed as others. Systems deliver more carceral invasion to benefit hierarchies. For whose benefit? Where did academics, physicians, societies learn this approach to beings? Maybe there is time for us to cross borders and imagine sustainable ways of living together in our common ecosystems. This starts where we are. For those at the top, those spreading genocide and targeted harm, Stop. Look. Listen. Turn around, turn over. Find humility and find paths towards those most affected by violence that you’ve defined as “for their own good.” I’m weary from enduring campaigns for “help” that takes our breath away, our liberties, our lives.

    • I agree. Any company who has sold drugs that create TD should provide palliative or corrective care FOR FREE as a condition of being allowed to continue as a company. Double if they denied or hid that their drugs created TD. It pains me deeply to see the ads now for TD drugs, yet further profits for companies to “treat” the very disease they CAUSED!

      • I would never accept or promote palliative or corrective care from a manufacturer of the drugs that cause TD. They acknowledge its existence now, not their role in producing it and in obscuring and erasing facts about it. The first step in repair, would call for truth telling. I don’t expect that in my lifetime. Think about war crimes and other governmental abuses; maybe in 50 years? Think about the ways that 2nd generation drugs were marketed to reduce “side effects” from earlier drugs. None of their messaging is altruistic. It’s all effects. “Side effects” are collateral damage to their bottom lines. They want to manufacture more. Profits made from dangerous assaults on people who are considered incapable of making informed decisions. The information needed to make an informed decision isn’t accessible to people who prescribe or to the people for whom it is prescribed, due to the flagrant denial and burial of data and bodies. The manufacturers, physicians, and academics can’t claim to know why and how any of their products “work” in the bodies, CNSs of people, just that without their products something “worse” will happen. Worse for whom? They don’t admit that the classifications imposed on people are arbitrary, based in fear, in faith, and in hierarchy. Those who set the norms for classification of people and treatments cannot conceive of the full humanity of those they objectify and dominate. Steve, please reconsider. Listen to those of us who have survived. Without powerful marketing, who would ever consider taking more relatives of the toxic substances that initiated actual disorders of twisting, twitching, and contracting? Free? No! First, truth.

          • And that pretty much includes the entirety of the big Pharma / mainstream medical industrial complex, at this point in time.

            At least that’s why I’m now asking medical advise from psych survivors, rather than those who get all their medical advice from our corrupted “fierce Pharma,” and their worshippers, the mainstream doctors.

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