Finding equality in biomedicine that was lost in translation

Lasker Foundation, this year, asked medical students, residents, junior doctors and researchers around the world to describe how a notable scientist has inspired them – through the scientist’s personality, life experiences, and/or through their scientific contributions. Here is my submission, which although was not shortlisted, reflects my journey as a Malaysian medical student and the wonderful opportunities to witness the most inspiring scientists who shaped my ideals.

 

INEQUALITY is self-perpetuating, with negative consequences that trap its victim in a vicious cycle. Growing up as an ethnic minority that is racialised as Indian in Malaysia, this realisation was almost a rite of passage. In the innocence of my adolescence, I once used to believe that one area of my life was exempt from the taint of injustice – science. How could a field that is fundamentally built on sound evidence and experimental data be swayed by the coercion of inequality? But soon enough, the truth surfaced when I began to appreciate how science, especially biomedicine was translated into real-life practices and policies. In fact, my earliest awareness of inequality that occurs when science crosses path with translation occurred at pig-farms in the very suburb where I was born. During the 1998 Nipah virus outbreak which took place here, the Malaysian political authorities were accused of delaying outbreak control measures despite strong evidence suggestive of a novel virus because it mainly affected a minority race.1

Coincidentally, the person who would help me understand and process these inequalities in biomedical translation was a key physician-scientist involved in solving the aforementioned outbreak – Prof. Adeeba Kamarulzaman. Later, she would also become the first female Dean of my medical school. During my early days in medical school, I would often be disheartened by practices in the medical fraternity that conflicted with the central part of my identity. I was faced with a system that chose to let down patients on the basis of race and sexuality despite being aware of biomedical evidence that advises the contrary.

For instance, I learned that despite the life expectancy of an Indian man in my country being seven years below the national average in 2016, little effort was taken to identify and mitigate the cause.Worse still, the school drop-out, addiction, imprisonment, suicide and mortality rates among Indians were the highest in proportion to the population.Occurring in parallel to this was the deeply rooted stigma and discrimination against the lesbian, gay, bisexual and transgender (LGBT) community by healthcare providers due to moral views. This was a harmful sentiment because it served to alienate the marginalised community without considering how 57% of newly diagnosed Human Immunodeficiency Virus (HIV) cases in Malaysia were due to male-to-male sex.4

The turning point came on a Monday in August 2018. Members of the LGBT community who volunteered for HIV testing following high-risk behaviour were criticised in a viral Facebook post shared by several thousand Malaysians.Even worse, this post was written by a medical practitioner servicing at a psychiatric unit in a state hospital. While majority of Facebook users expressed agreement in view of religious belief, Prof. Adeeba reminded the doctor of duties to uphold the Hippocratic Oath and not further distance marginalised communities from healthcare services. Unsurprisingly, this divergent view of standing in solidarity with a marginalised community attracted severe backlash but Prof. Adeeba remained unperturbed.

As it turns out, she has always been rallying against inequality in translation of biomedicine, even when it meant opposing the popular stream of thought. Notably, she was part of the group that introduced harm reduction in Malaysia by implementing the Needle and Syringe Exchange Program (NSEP) and the methadone replacement therapy in 2004. This team of scientists reviewed scientific evidence and built a strong argument that convinced the Malaysian authorities who were initially resistant to the strategy due to the fear of disapproval from the religious majority. Upon implementation, drastic reduction was seen in the HIV transmission rates among people who inject drugs who only accounted for 4% of newly diagnosed HIV cases in 2018 compared to 61% in 1990.Currently, Prof. Adeeba is working towards improving the neglected healthcare needs of prisoners and rethinking our prison system including the death penalty. She will also be the first Asian to be elected as President of the International AIDS Society later this year.

Through her scientific undertakings, activism and leadership, Prof. Adeeba has shown me that combating inequalities in translational biomedicine is a three-pronged effort. It starts with recognising the unequal state at any step from bench-to-bedside, sounding the alarm bravely when an incongruence is identified and ultimately using scientific evidence to correct the problem. Her commitment to champion marginalised communities encourages me to be aware of inequalities in biomedicine that are beyond the sphere of my own identity. For example, whilst working on tropical infectious disease research as an Amgen scholar last year, I began to appreciate how the poor, underprivileged and underclass were disproportionately more affected by these diseases.

Essentially, Prof. Adeeba has proven that when scientists address inequality in their line of work, the wheel that perpetuates injustice is not only interrupted, but thoroughly dismantled.

 

References

  1. Neo, H., 2011. “They hate pigs, Chinese farmers … everything!” Beastly Racialization in Multiethnic Malaysia. Antipode, 44(3), pp.950-970.
  2. Department of Statistics Malaysia. Abridged Life Tables, Malaysia, 2016–2018 [Internet]. 2018. Available from: https://www.dosm.gov.my/v1/index.php?r=column/pdfPrev&id=aDV6TWxoU0NlNVBYN1hXM1Y0L2Jadz09
  3. Jabanathan G. Indian Gangsterism: A Brief Introduction [Internet]. 2013 p. 2-4. Available from: http://www.necf.org.my/newsmaster.cfm?&menuid=43&action=view&retrieveid=1543
  4. Malaysia’s HIV Rate Highest Among Men Who Have Sex With Men. [Internet]. 2019. Available from: https://codeblue.galencentre.org/2019/11/29/malaysias-hiv-rate-highest-among-men-who-have-sex-with-men/
  5. Free Malaysia Today. Doctor chided over disdain for LGBT community. [Internet]. 2018. Available from: https://www.freemalaysiatoday.com/category/nation/2018/08/08/doctor-chided-over-disdain-for-lgbt-community/
  6. Ministry of Health Malaysia. Country Progress Report on HIV/AIDS 2018. 2018 p. 13-15.

 

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