Why History, Finance and Power matter in Medicine

In Health and Healing by Chidinma Nwakalor

You may have heard the phrase “turning blue”. In the case of a heroin overdose, some people’s skin and lips turn blue-purple due to a lack of oxygen in the blood. The medical term for this is called cyanosis. As I read an article on cyanosis recently, my hand fixed on my textbook, it dawned on me that my brown skin can not “turn blue”. This phrase may not apply to people with darker skin tones. A grey or white cast would be a more accurate description of cyanosis in dark-skinned people. By my final year of medical training, I had been taught to understand medical terminology, and disease, and complex human systems. But to understand power and language, and their effect on our patient health outcomes, I would need a different type of education— self-education. 

Knowledge Creation in Healthcare

76.74 per cent of the world’s population live in Asia and Africa, yet the majority of research and knowledge does not follow the same distribution. Historical forces have located the majority of medical research and development in the global north. This has meant that the people of the global north (predominantly fair-skinned), the culture of the global north, and the issues of the global north have taken centre stage in medical knowledge production and literature.

Is this a Widespread Problem?

I relayed this random thought about cyanosis to a friend of mine who is also in the medical field. In response, she opened up an old dermatology textbook, and we flipped through the pages. There were no people with dark skin. There was an absence of imagery to highlight how many common skin conditions appear on darker skin tones. For example, one of the telltale signs of rosacea, a common skin condition, is persistent redness. This redness may be masked by melanin – which means that this widely known diagnostic criterion may not be as useful in darker patients.

In the current Covid-19 pandemic, the incidence of Kawasaki disease (an inflammatory condition) has increased. One of the diagnostic criteria we’ve been taught for this condition is a bright red polymorphous rash. On darker skin patients, the bright red rash may be masked by melanin, and therefore missed. 

What is being done?

These examples illustrate why different skin tones have to be taken into account when developing content for medical education. Over the past decade, some publications have addressed the racial bias in diagnosing skin conditions including, Mind the Gap: A Handbook of Clinical signs in Black and Brown Skin, authored by a team that included Malone Mukwende, a medical student who also recognized this same dilemma in medical education.

Also, academic bodies and government agencies are evolving and committing more resources to the cause.

How About Non-skin Related Conditions. 

This knowledge gap does not end with skin-related conditions. The Health Professionals for Diversity Coalition published a report that highlighted a few key studies. One study showed that of all participants diagnosed, African American women were 67 per cent more likely to die from breast cancer1. Another study showed that Hispanic and African American youth were substantially more likely to die from diabetes than others2. In yet another study, the wait times for African American patients needing a kidney transplant was almost twice as long as the wait for white patients.3

Diseases that disproportionately affect people of colour also tend to have lower research funding. For example, Fibroids—a benign tumour with a prevalence of 60 per cent by age 35 amongst African American women—received about $17 million in NIH research funding in 2019, putting it in the bottom 50 funded conditions. However, In 2020, the Uterine Fibroid Research and Education Act was introduced to expand federal research and bring much-needed attention to this overlooked disease.

Although these facts are intrinsically American, it is difficult to ascertain if the picture here in Canada is much different due to limited research studies analyzing health outcomes in different racial and ethnic groups. 

However, the limited research reports that do exist demonstrate that the burden of diseases may be greater for Black Canadians compared with their white counterparts. Therefore it is reasonable to be concerned that the picture in the United States may be similar in Canada.

The Connection between health and power

Kayonne Christy’s piece highlights how white supremacy and power is an important force that shapes the institution of medicine. This same force affects funding agencies, granting agencies, and centres for research and knowledge development. These institutions set research agendas and prioritize what type of knowledge creation is supported. They are extremely powerful.

This power dynamic is perfectly illustrated with the example of sickle cell disease (SCD) funding versus cystic fibrosis (CF) funding. SCD is a predominantly Black disease while CF is a predominantly caucasian disease[4]. The two diseases are chronic genetic diseases that shorten the lifespan of the patients they affect to a median of 37 years for CF, and 43 for SCD.

However, in the US, the average annual National Institute of Health (NIH) funding per affected individual was 3.4-fold greater for Cystic fibrosis than Sickle cell disease from 2008 to 2016. Furthermore,  between 2013 – 2016 alone, private funding was 971 times greater for CF than SCD. Consequently, there were 1.8 times more academic research publications in PubMed relating to cystic fibrosis and a remarkable amount of novel treatments approved by the FDA compared to sickle cell disease.[5]

In England, The Lancet—the oldest peer-reviewed general medical journal—referred to sickle cell disease as the “neglected tropical disease” even though 15,000 people suffer from Sickle Cell Disease in the country.[6]

In Canada, the  President of the Sickle Cell Awareness Group of Ontario, (SCAGO), admits that Sickle Cell Disease (SCD) is not a priority for Canada even though roughly 6,000 people suffer from it. The SCAGO, says that as of 2020, the organization does not receive funding from any level of government in Ontario, even though the disease affects more people than other high profile diseases such as Hemophilia (3,000 people) and Cystic Fibrosis (4,200 people)[7].

How should the Hippocratic oath respond to Black Lives Matter? 

What does the BLM movement mean to those who took an oath to save lives and do no harm? How should healthcare respond? I don’t have all the answers, but here are some of my reflections:

  1. Textbooks should be updated to be more reflective of diverse human populations and skin tones. Students should know what the same diseases look like in different populations. 
  2. Medical schools need diverse learning environments in the classroom to improve intercultural and interracial competencies, which are critical components of any physician’s education.
  3. Where there is a gap in knowledge, and discrepancies in health outcomes in different racial populations, this should be seen as a signal to invest more funds in relevant public health research and analyses. 
  4. Knowledge production in healthcare needs to diversify, especially at the highest levels of academic medicine and government. 
  5. The solution to medical racism is multi-layered and complex, but for the Hippocratic oath to be meaningful, and true, the players responsible for resource allocation and knowledge creation need to recognize the disparities, and understand the downstream effects their decisions have. They must engage with this call for the protection of Black lives. 

Chidinma Nwakalor is a Nigerian-born writer who considers herself a global student that constantly investigates the world. She completed her undergraduate training at the University of Toronto, where she received her B.Sc. (honours with distinction) in Global Health and Health Studies. She is currently a 4th-year student at AUC School of Medicine. She is interested in global health, nutrition and the relationship between the social determinants of health and patient outcomes. She spends her free time experimenting with food and sometimes posting on instagram.

References:

[1] Joslyn SA, West MM. Racial differences in breast carcinoma survival. Cancer. 2000; 88: 114-123

[2] Lipton R, Good G, Mikhailov T, Freels S, Donoghue E. Ethnic differences in mortality from insulin-dependent diabetes mellitus among people less than 25 years of age. Pediatrics. 1999;103: 952-956.

[3] Young, CJ, Gaston RS. Renal transplantation in black americans. N Engl J Med. 2000 343: 1545-1552. 

[4] Modell B, Darlison M (2008) Global epidemiology of haemoglobin disorders and derived service indicators. Bull World Health Organ 86: 480–487

[5] Farooq F, Mogayzel PJ, Lanzkron S, Haywood C, Strouse JJ. Comparison of US Federal and Foundation Funding of Research for Sickle Cell Disease and Cystic Fibrosis and Factors Associated With Research Productivity. JAMA Netw Open. 2020 Mar 2;3(3):e201737. doi: 10.1001/jamanetworkopen.2020.1737. PMID: 32219405

[6] Dexter, D., Simons, D., Kiyaga, C., Kapata, N., Ntoumi, F., Kock, R., & Zumla, A. (2020). Mitigating the effect of the COVID-19 pandemic on sickle cell disease services in African countries. The Lancet Haematology, 7(6), e430–e432. https://doi.org/10.1016/s2352-3026(20)30122-8[7] The Caribbean Camera Inc. (2020, May 22). Sickle Cell Disease-A racialized disease? – SCAGO. https://sicklecellanemia.ca/sickle-cell-disease-a-racialized-disease