Blackness x Neurodiversity IV: The Failure of Mental Health Medication Clinical Trials to Be Inclusive
tw/cw: suicide, substance abuse
What do we do with mental health medication and institutions that claim to be for us all, yet do very little to actually include us all?
What to make of medication whose clinical trials take a very limited percentage of the world’s population into consideration when creating medication to treat “mental illnesses/disorders” that exist to help justify the existence of said medication?
These are some of the many questions we need to begin seriously asking ourselves if we actually want to take mental health seriously like we say we do. Because I promise you that just adding more women and people of color into the workforce as psychologists and psychiatrists will not do the trick — especially because of how racist, white supremacist, anti-Black, misogynistic, queerphobic, transphobic, classist, ableist, etc. the education is and how it’s used to justify the continued existence of and train people to be faithful to capitalism.
These are questions and thoughts I’ve been asking myself and contemplating on since my suicide attempt back in August 2019. I was at a really low point in my life because I was using alcohol and meth to try and keep myself upright while I lived in Seattle for eight months. That city is obscenely racist, white supremacist, anti-Black, ableist, and capitalist and made it very clear every chance it could. It was a reality, pain, and abuse I dealt with every day from the moment I got there until I finally decided, in haste and without much of a plan, to move back to NYC. And coming back to NYC wasn’t any easier as well because I was put in survival mode from the moment I touched down until recently.
What really spurred my decision to be more critical of how mental health institutions and medications weren’t actually for everyone, especially those most vulnerable in society, was how after my two week stay in a psych ward my antidepressants stopped working. It took a few more weeks until my psychiatrist at the time believed that the medication wasn’t working for me, and switched me to another, which put me to sleep. And that spurred my journey of hopping from hospital to hospital, seeking medications that could work, and either the meds didn’t work or the psychiatrists didn’t believe me and argued with me about what side-effects I should be experiencing vs. what I was actually experiencing.
That went on for about a year and a half, and I must remind everyone that this was happening amidst a pandemic (which also added extra trauma to the already traumatic and abusive experiences I was going through that most people in my life at the time didn’t actually care about, and were incredibly dismissive of my feelings while expecting to have unfettered access to all of me while I was burned out), and it eventually led me to these two very informative articles.
The first is a study from John Hopkins Science Policy Group. To quote the article:
Women and ethnic minorities have historically been underrepresented in clinical trials [vi], and as a result some drugs may be less effective or even dangerous for them to use. Although African Americans represent 12% of the United States population, they make up only 5% of all clinical trial participants. Only 1% of clinical trial participants were Hispanic, though they comprise 16% of the national population [i]. Some of these data can be attributed to confounding socioeconomic factors that limit the participation of certain subgroups in clinical trials, such as “insurance status, patient inconvenience costs, availability of transportation, distance to study site, and patient and family concerns about risk. [i]” However, even with these factors considered, case studies have found that a patient’s race, age and sex can play a more significant role in trial participation than their proximity to the study location and the other factors listed above [i][iv].
This is a particular problem in diseases of mental health. A report by the surgeon general in 2001 found that “among 10,000 participants included in randomized clinical trials for bipolar disorder, schizophrenia, depression and ADHD since 1986, ‘only 561 African Americans, 99 Latinos, 11 Asian American sand Pacific Islanders, and zero American Indians and Alaska Natives are available for analysis” [ix]. Disparities in schizophrenia treatment begin at diagnosis: Studies show that African Americans are diagnosed with schizophrenia at a disproportionately higher rate than white Americans (8). Further, it has been found that women, ethnic minorities and those over the age of 45 are more likely to receive first-generation anti-psychotic medicines, which have more side effects than newer medicines [v]. African Americans already have a greater risk of experiencing these side effects [iii], so this difference in prescription makes the problem even worse. An FDA webpage reports that a single Aripiprazole trial was comprised of 68% men and 32% women. By race, the patients were 47% white, 40% Black or African American, 13% Asian, and less than 1% each American Indian/Alaskan or Native Hawaiian/Pacific Islander. No differences in efficacy were found by sex or racial subgroups. There were, however, differences in risk for side effects. Men and African Americans had a higher rate of experiencing akathisia, the urge to move constantly. All patients were between 18 and 66 years of age; no information was provided as to the age breakdown [ii].
Inequitable research can lead to dangerous outcomes for those who are not represented in clinical trials. Drugs including chemotherapeutics, antiretrovirals, antidepressants, and cardiovascular medications have been withdrawn from market due to differences in drug metabolism and toxicity across race and sex [i].
The second is an article from Financial Times. In it, Adam Green writes:
Why do Caucasians dominate trials? Some reasons are benign. Eligibility rules restrict patients with other diseases or conditions that create risks specific to the therapy being assessed. Either could be more prevalent in a racial or ethnic group.
But many of the reasons are more unsettling, including inequality, bias and stereotypes, and commercial imperatives.
“Because drug companies have focused on wealthy, white, Caucasian European markets, where individuals can pay the money and where they can draw clinical trial subjects from, research has been too dominated by white populations,” says Mr Arlington.
Trials also tend to require visits to research centres in cities or elite institutions, which are rarely close to where minority populations live. Travel costs, unpredictable schedules, or care-giving responsibilities could prevent them participating
Physicians, who usually inform patients about trials relevant to them, might not raise the prospect of participation as often with minority groups.
“Decision bias is an important factor. Physicians don’t feel comfortable discussing clinical trials if there is a language barrier,” says Dr Duma.
They might also harbour biases. One review showed some physicians hold stereotypical views indicating that certain racial groups were less likely to comply with rules and regulations of trials.
Physicians with racial biases have been found to communicate less with black patients. A video-based analysis showed interactions with the latter were shorter than with white patients, and clinical trials were mentioned less frequently and, when mentioned, discussed for less time.
Inequality and privilege has also been alleged in emergency settings; ZMapp, an experimental Ebola vaccine was, critics argue, prioritised for foreign aid workers in Africa. However the opposite problem, of trialling new treatments in poor countries, using citizens as guinea pigs, has a dark history of its own. Mistrust of the medical system could be a reason minority groups in western contexts do not participate, says Dr Duma.
Regulators are working to improve demographic balance but their efforts are yet to have an effect.
So, here we have two comprehensive looks beyond my own experience about how racism, white supremacy, anti-Blackness, misogyny, and classism converge in order to sustain the ableism at the root of the mental health industry and how capitalism plays a huge role in how both the mental health industry and the medications they produce for societies the world around help maintain systemic oppression.
Psychiatric drugs have often been prescribed to patients on the basis that they cure a ‘chemical imbalance’. However, no chemical imbalances have been proven to exist in relation to any mental health disorder. There is also no method available to test for the presence or absence of these chemical imbalances.
Now we must decide what kind of society we want to be:
One that continues to allow people to experience trauma, abuse, and death at the hands of the very institutions that claim to have our best interests at hear?
Or do we want to be a global society that actually takes serious the care and safety of all human life, and make the necessary changes to ensure that we keep our word and not allow profit to be worth more than life on Earth?
