Personally Speaking: Time for a transparent look at psychiatric treatments
By Mary Rossell
Fourteen hundred days. That is how many days it has been since my son Kevin died. I remember when I counted the number of days after his birth, then transitioned to months and then to years. Now, when asked by others about his death, I give the socially appropriate answer of ‘nearly four years,’ but I still think ‘1,400 days.’
Kevin suffered from a serious mental illness. I am not certain which one, as he was given at least two dozen diagnoses during the years of his treatment, often multiple diagnoses at the same time. This is not uncommon, as there is a significant overlap in symptoms for most psychiatric diagnoses. Additionally, in the absence of biological markers, psychiatric disorders remain in the realm of self-reporting and observation, which serve as limited vehicles to inform diagnosis or treatment response. At the later stage of Kevin’s illness, one of his doctors said to me, “Diagnosis is just a label and doesn’t really help. What we really do is treat symptoms.”
“OK,” my husband and I said to ourselves, “let’s be as aggressive as possible in treating symptoms.” As Kevin’s illness progressed, we searched for possible clinical trials since he failed to respond to conventional treatment. There were none. Treatment Advocacy Center founder Dr. E. Fuller Torrey and his team found that among 21 NIMH-sponsored treatment trials for 2015-2017, only two trials used a pharmacological agent intended to lessen the symptoms of the disease, an 88% decrease in schizophrenia-related treatment trials compared to a decade earlier. In 2015, NIMH-sponsored treatment trials dropped to an all-time low of zero. This was the very same year I repeatedly searched trial websites.
After Kevin’s death, one of his doctors compared his illness to that of end-stage cancer. While well-intentioned, this comparison obscured how very different the trajectory is between cancer and psychiatry when it comes to research and treatment. I remember when my aunt died at the age of 47 of breast cancer in 1973. At the time, the breast cancer mortality rate was high, and society did not say the word “cancer” or “breast.”
Fifty years later, not only have we progressed as a society in the discussion of breast cancer, treatment has advanced, clinical trials are common, and mortality has decreased. The same cannot be said for psychiatric disorders over the past 50 years.
What has changed over 50 years? Advancements in the public dialogue about mental illness have been made and should be applauded. Much of this dialogue has revolved around getting people into treatment. However, we need to remember that getting people into treatment is only half the problem. While we make progress with the many social issues such as poverty or lack of insurance, addressing these societal issues will have limited impact to outcomes. This is because even with the best care, too many people will not recover from psychiatric illnesses.
What hasn’t changed is the effectiveness of the treatment. While there is continued work in basic research, with genomes and neurobiology as two promising areas, there is little progress in the incorporation of basic research results into clinical application. As a result, outcomes are reported as either remaining the same or getting worse. In 2017, neuroscientist Dr. Huda Akil and her team wrote in their report, “Treatment Resistant Depression: A Multi-Scale, Systems Biology Approach,” that an estimated 50% of the depressed are still inadequately treated by available interventions. Sadly, according to the CDC, suicide rates increased by 35% between 1999 and 2018.
So, while I applaud gains in our discussion about mental illness, we cannot afford to lose sight of the persistent gap that remains between what is discovered in the laboratory and what is offered in the treatment center, even when they are physically just a few feet away from each other.
So, what do we do? Double down on basic research, understanding it maybe years to decades before we make measurable change to outcomes? Divide money and effort between short term investments, knowing they have limited effectiveness, and long-term research which we hope to be truly transformative? I don’t know the answers to these questions, but I do know we need a candid discussion about the state of psychiatry. In one of Kevin’s last emails to his doctors, he wrote, “If you want to understand my experience better, start by thinking about the ways you are thinking incorrectly about it.”
In hindsight, it was a prophetic statement not only about his own treatment but about the psychiatric field in total. It is time to shine a light on what is and is not working in psychiatry. Doing anything less risks losing even more lives in future generations.
Mary Rossell is a mom and an advocate for improving psychiatric treatment outcomes.
