By Shaun Flores
For many, clinical trials can spring up notions of being a ‘guinea pig’ or a ‘lab rat’. Outdated ideas of trials combined with scaremongering have created hysteria around clinic trials. To make the advancements in modern medicine we have made we required testing to find solutions that have garnered questions of ethics and morals within certain fractions of society.
With these progressions, there are some regressive elements that unfortunately still remain. Ethnic minorities in clinical trials are underrepresented, and modern medicine is failing the communities that stand to benefit the most from inclusive medicine. This lack of ethnic diversity prevents treatments from being inclusive or effective for all the populations within the UK.
Shaun Flores
I live with Obsessive Compulsive Disorder, a common mental health condition resulting in obsessive thoughts and compulsive behaviours. According to the university and college union: “OCD affects about 1-2% of the UK population, it is incredibly common, yet grave silence about OCD remains. OCD thoughts are known as “ego-dystonic”, meaning they are thoughts which are out of alignment with your morals and values.
OCD is a serious anxiety disorder that is not taken seriously by many people. Although the World Health Organisation lists anxiety disorders, including OCD, as the sixth largest contributor to non-fatal health loss globally. Most assume OCD is about cleaning or symmetry, but OCD often causes torment and depression in many sufferers.
Being a young black man with OCD, the challenges I face speaking up about mental health differentiate me from the general public. My OCD diagnosis changed my life. From an OCD breakdown due to the thoughts I was having, I became severely depressed as I believed I was a threat to society. I avoided human contact and hid in my house. Thanks to a therapist who saved my life, I have since recovered and I have become one of a few black OCD activists/advocates. The more I have researched, the more I’ve discovered the gross inequalities that exist for ethnic minorities within the OCD community.
OCD affects men, women, and children of all races, ethnicities, and backgrounds equally as outlined by the International OCD Foundation, yet the representation of black people with OCD remains poor. Truthfully, the OCD community is whitewashed and poorly serves other communities. Research shows that ethnic minorities are under-represented in OCD clinical trials.
John Marion Sims
The British Journal Of Psychiatry found that “the presentation of OCD symptoms by ethnic minorities is at times not taken seriously which prevents people from reaching out for help. Combining this with the taboo nature of the thoughts and behaviours within OCD makes it harder for those to get the help they need”.
The relationship between medical institutions and ethnic minorities can be described as splintered with a lack of trust as a result of years of injustice and infamous cases where the communities have been taken advantage of. John Marion Sims, known as “the father of gynaecology” experimented on slaves or the Tuskegee syphilis experiment, where 600 African-American men in Alabama were given food, free medical care, and burial insurance for participating in the study. About 400 of these poor Alabamans had syphilis. The government studied the natural progression of the disease until death, even though penicillin was an easy, cheap, and safe cure.’ History informs us as to why distrust exists to this very day.
In general, even outside of OCD trials, BAME communities are not often recruited into clinical trials – according to one UK study, only around 5% of people from BAME groups who were surveyed had ever participated in medical research yet they make up around 14% of the UK population. Another example was the infamous COVID-19 which posed a greater risk to BAME communities.
“Only six of the 1,518 COVID-19 trials registered on ClinicalTrials.gov, currently collect data on ethnicity. Out of the 270,000 people who had signed up to the NHS Vaccine Registry to take part in COVID-19 vaccine trials in the UK, 11,000 are from Asian or British Asian backgrounds and 0.4% are Black, African, Caribbean or Black British.” We must address this gap.
Some of the ideas of mental health held by older generations of ethnic minority communities serve as added barriers, preventing the younger generation from getting the help they need. Meaning they suffer in absolute silence further continuing the cycle of poor mental health.
According to the UK charity OCD action, there is an average delay of 12 years between the onset of OCD and treatment being received. There are many reasons why people with OCD delay seeking help. These include a fear that they will be committed to a mental institution, a fear of the stigma associated with mental health disorders, or a simple belief that no one can help them. A 2015 study found that ‘mainly black people with the most severe form of OCD especially those with uncommon symptoms may be misdiagnosed as psychotic.’ I strongly believe that within ethnic minority communities, 12 years is a generous estimate.
To reduce these amount of years that it takes for those with OCD to come forward and be diagnosed it is a multi layered approach that has to be engineered.
It is important to raise awareness among various racial and ethnic groups about the physiological and biological origins of OCD and how evidence-based Cognitive Behavioural Therapy (CBT) / and Exposure and Response Prevention (ERP) treatment can help to reduce cultural stigma associated with it. In order to prevent or reduce the risk of exacerbating symptoms of OCD in minority populations, culturally specific interventions should be developed to target specific beliefs and practices, including race, ethnicity, sexual orientation, gender, socioeconomic status, religious beliefs, and cultural beliefs, among others. A very simple culturally specific intervention is having more OCD specialists with similar cultural, racial, or ethnic backgrounds to their patients.
Why? Because birds of a feather flock together. When I first discovered I had OCD, I would have loved to have seen more people like me living with OCD. This visible diversity encourages other ethnicities to speak up, as it removes communication and language barriers alongside knowing the cultural nuances that exist. If we were able to include education for local community representatives such as religious leaders that we know, community icons as well as family members about OCD treatment to increase support, reduce shame, embarrassment, or guilt.
Underfunded, underresearched and the future of trials
OCD is an underfunded and under researched field as only a mere 89p is spent on research for every person affected by OCD, yet the disorder and mental illnesses more broadly has devastating effects on the UK economy.
The Centre for Mental Health discovered in 2010 the total economic cost of mental illness in the UK was an astonishing £105.2 billion, of which anxiety disorders, including OCD, cost £9.8 billion a year.
The numbers above are the exact reason why OCD research desperately needs more funding. In spite of the distrust and fractured relationship with medicine, I currently partake in the new NHS trial for psilocybin, (the psychoactive ingredient in ‘magic mushrooms’) with Imperial College London. The aim is to assess the therapeutic capabilities of psychedelics on OCD symptoms.
This information was not widely accessible and I was lucky to hear about the trial due to my own activism within this space and my volunteer work for Dr. Nick Sireau’s organisation, Orchard OCD—a UK-based charity with the sole mission to fund better and faster treatment for those living with OCD. I have volunteered with the intention to help others and improve research within my own community. The trial is a momentous occasion for the entire OCD community and could potentially change lives, particularly if the conclusive findings can be made available as an alternative form of treatment for those living with OCD.
At present a lack of ethnicities in clinical trials combined with inadequate funding for OCD research and a poor representation of those who speak openly about their experiences with OCD, the communities who stand to lose the most continue to be victims of gross inequalities in a system that they feel does not serve them. A proper mental health service must benefit every pocket of society and I am dedicated to fighting for its realisation.