Closing the bipolar diagnosis gap for Black Americans

people of colour

April was both National Minority Health Month and Counselling Awareness Month, designations that call attention to persistent health disparities among racial and ethnic minorities and lift up the counselling profession, respectively. However, ending health disparities and bolstering one of the specialties that can help do so are critical components of the much needed daily work for those impacted, month after month and year after year.

The bipolar diagnosis gap for Black Americans is a clear example of the structural racism and bias that exist in medicine and the field of psychiatry. This diagnostic gap has been studied for over 40 years. Highlighting this issue is necessary, so that mental health practitioners, policymakers, and healthcare systems can engage in meaningful dialogue that will generate insights and solutions to tackle such a deeply entrenched problem.

Facts around bipolar disorder and misdiagnoses

Bipolar disorder is a serious and persistent mental illness that often severely impacts those living with it. Episodes of mania characterise bipolar I disorder, and hypomania for bipolar II disorder. According to the National Institute of Mental Health, about 2.8% of adults in the US live with bipolar disorder, or roughly the entire populations of Chicago, Los Angeles, and Dallas combined. Suicide death rates among people living with bipolar disorder are 10 to 30 times greater than those in the general population. The suicide risk is especially high when the disease is misdiagnosed or left untreated.

There are no major rate differences in the prevalence of bipolar I and II disorders by race, but there are significant differences in diagnosis by race. Black Americans are less likely to receive a diagnosis and, therefore, less likely to receive treatment for bipolar disorder. A mountain of research shows that Black Americans are more likely to be misdiagnosed with schizophrenia and that racial disparities in psychotic disorder diagnosis are high, reflecting inaccuracies. Furthermore, recent findings demonstrate that “overdiagnoses are largely rooted in the racial biases of clinicians and compounded by higher rates of traumatising stressors among Black people due to racism.”

Because Black Americans are three to four times more likely to be diagnosed with schizophrenia or another psychotic spectrum illness, the true nature of their illness is often obscured, impacting their treatment journey and potentially resulting in lasting harm.

Misdiagnoses can manifest in myriad ways. For example, a healthcare provider may evaluate a Black person presenting with psychotic symptoms like auditory hallucinations or paranoia. That provider may focus very narrowly on the presence of the psychosis at the exclusion of appropriate screening for other psychiatric conditions. If the provider identifies psychosis, but doesn't ask about manic or depressive episodes, they may over-emphasise the psychosis, while ignoring other symptomatology, which can lead to failing to capture a diagnosis of bipolar disorder.

An approach that views healthcare as a basic human right, and also recognises the insidious impact of structural racism within medicine, is necessary to work towards closing the bipolar diagnosis gap, in particular, and eliminating racial disparities in mental health diagnosis and treatment more broadly. Such a framework requires several important changes to upset the status quo.

Healthcare providers must acknowledge bias and the reasons for mistrust — and address them

Positive change starts with healthcare professionals themselves. All of us have biases. Providers being aware of their own biases is a critical first step to better patient treatment. We all need to examine the data. We all need to be curious. And, we all need to ask ourselves the tough questions with each and every patient who sits before us. Recognising the valid reasons for mistrust of the healthcare system among many Black Americans is a key part of this self-examination. The notorious Tuskegee Syphilis Study is only one of many historical horrors that occurred in the US, but ongoing medical mistreatment — whether it’s related to COVID, maternity morbidity and mortality, mental health, cancer treatment, or other areas — continues to create uncertainty about our healthcare system among Black Americans.

What’s more, only about 2% of psychiatrists and 4% of psychologists are Black, a shortage that impacts access to culturally sensitive healthcare services, peer-to-peer role-modelling, and education. As role models, Black providers can potentially help those who have failed to recognise their biases proactively address them and more effectively care for Black patients — and hopefully make wary Black patients feel more at ease. When Black youth see Black physicians and other Black health practitioners, this nurtures their interest in healthcare and encourages Black youth to pursue careers in medicine and in psychiatry, in particular. Discussing systemic racism and reading books like Legacy: A Black Physician Reckons with Racism in Medicine by Dr Uche Blackstock in medical education brings attention to these challenges, so that the medical community can work collaboratively to reduce bias and improve outcomes for patients. Every clinician has a responsibility to educate themselves and deliver compassionate medical care to patients, irrespective of their race, gender, sexual orientation, or socioeconomic status.

Insurance systems must reform practices to end the dearth of access

Lack of insurance, underinsurance, and overreaching insurance requirements complicate the path to closing the bipolar diagnosis gap. With “the mental health system a broken patchwork of siloed services resulting in a significant number of psychiatrists who do not take insurance”, patients lose. This is very true for large swaths of the Black population, as well as those living in rural areas of the country. Many smaller mental health practices opt out of insurance and/or are considered out of network. Even Black patients with insurance who overcome their hesitation and mistrust may find care in their region is neither accessible nor affordable. When clinics do accept insurance, there are typically long wait times to initiate services, especially for individuals with Medicaid and Medicare. Health and mental health outcomes remain closely tied to one’s zip code.

For providers, insurance reimbursement parity is an issue. Providers often have to fight insurance companies for every dollar when providing services. They have to fight to get a patient access to the most appropriate medications. Even more egregiously, they often have to fight to get their patients in-patient care if needed. Poorly constructed algorithms often aren’t supportive of what's happening in a community, boots on the ground. Additionally, who gets credentialled and how lists of available providers are generated and updated, or not, are problematic.

This fractured system contributes to access issues and risks individuals decompensating, which can worsen outcomes. If we want to reduce the risk of hospitalisation, we have to bolster our out-patient services and ensure full and expedient access to them. However, level funding for such initiatives remains problematic. We are not putting more money into community-based healthcare systems nor streamlining insurance processes, yet, we are expecting better outcomes. Delivering full access means step-by-step reform for every piece of the puzzle.

Communities must consistently partner with schools, and civic and faith organisations

Increasingly, bipolar disorder is being diagnosed as early as adolescence or the early 20s. Although symptoms can occur at any age, early intervention creates better outcomes in the long term when symptoms present early. While we don’t expect educators to diagnose mental illness, we can train them to recognise warning signs and symptoms and give them the tools to improve communication with parents, which may then facilitate connection to the appropriate healthcare providers. Connecting mental health within the school setting meets youth where they are. Social media is a double-edged sword, creating community and improving awareness for some, while worsening mental health and well-being for others. Yet, it is not going away; so, it is prudent for schools and other organisations like faith communities to harness the power of social media and use it creatively to take a more active role in helping others learn the signs of a mental health crisis.

When educational, religious, and civic organisations know how to make appropriate referrals, people who are struggling may feel safer and more connected. In the US, the Black church is as much a psychosocial entity as it is a religious entity, providing a number of services for the congregation and surrounding communities. Partnering with the church can help to dispel myths and reduce the stigma around mental illness among Black Americans. The same is true for Black sororities and fraternities. These organisations validate the lived experience of many Black people and allow them to feel seen, heard, and understood in deeply powerful ways. These key partnerships are sustainable and serve as consistent and resourced fixtures that strengthen connection and well-being for individuals and the larger community.

Law enforcement must retool its response to mental health crises

According to several studies and data cited in Psychiatric Services, at least “76% of individuals killed in police encounters have had previous mental health treatment.” In these encounters, “Black peoples’ fatality rate is 2.8 times that of their White counterparts.” Law enforcement needs proper training and resources to de-escalate situations involving people with mental disorders. Someone who is acutely manic could appear agitated and labile and end up in handcuffs on the way to jail instead of the local ER for acute psychiatric care. We must think differently about how we respond to someone who may be in the midst of a mental health crisis.

Triaging calls appropriately when they come into dispatch is a critical first step. For calls where an individual may be experiencing a mental health crisis, connecting the caller to a trained responder such as unarmed mental health counsellors and other medical professionals can be a pivotal point of intervention. Tracking outcomes in a national database would further enhance our understanding of the needs of different communities and could also facilitate fast entry into the local mental health system.

While some strategies are specific to bipolar disorder, most go beyond to address other psychiatric symptoms and other mental health disorders as well. These steps are necessary to close the gap and make real change.

Complex and multi-faceted changes seem overwhelming, so it’s important to remember two basic principles at the outset: 1) Everyone is a human being, and the life of each human being matters irrespective of their diagnosis, which means that the totality of someone’s existence is not defined by their diagnoses. I don’t treat schizophrenics. Rather, I treat people living with schizophrenia, or living with bipolar disorder, or living with depression. That individual is someone’s child, sister, brother, aunt, uncle, parent, or friend. 2) It is an honour and privilege to have someone come into your hospital or your office and share profoundly difficult personal information with you, their painful trauma and disappointments. As healthcare providers, we never want to lose sight of the trust placed within us or the power of our story and our connection to our community to heal.

Dr Leesha Ellis Cox
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Leesha Ellis-Cox