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How Racism In The Healthcare System Continues To Disadvantage The Marginalised 

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Racism seems to find its way everywhere, even in the field of medicine, affecting everyone from patients to doctors to nurses. This bias has not only held back the development of the medical field but also millions of people who haven’t received the treatment they deserve.

doctor holding a needle, vaccine in their hands
Representational Image

Participants in clinical trials are overwhelmingly caucasian.

How Racism Affects Medical Trials

First, let’s examine racial bias in clinical trials, which are profoundly white. For years, many ethnic minorities have been excluded from the clinical and medical trials of numerous drugs and treatments. A research study by Meghan E. McGarry and Susanna A. McColley titled “Minorities Are Underrepresented in Clinical Trials of Pharmaceutical Agents for Cystic Fibrosis” found that between 1999 and 2015, 94.4% of subjects in the 147 pharmacology clinical trials on treatments for Cystic Fibrosis were white. Only three clinical trials reported Asian subjects.

This is concerning because many diseases and conditions affect different ethnicities in different ways. According to a 2016 study “Novel genetic risk factors for asthma in African American children: Precision Medicine and the SAGE II Study” only 5% of the genetic traits linked to asthma in European Americans are found in African Americans. Hence the treatment that is developed may not be as effective on asthmatic African Americans as compared to European Americans.

A 2009 research study “Ethnic Differences in Bronchodilator Responsiveness Among African Americans, Puerto Ricans, and Mexicans with Asthma” showed that 47% of African American children with moderate-to-severe asthma portrayed a diminished response to Albuterol, the most prescribed drug for asthma.

And this problem isn’t going away. The 2015 research study “Moving toward True Inclusion of Racial/Ethnic Minorities in Federally Funded Studies: Key Step for Achieving Respiratory Health Equality in the United States” by Esteban G. Burchard found that over 20 years, the inclusion of racial minorities in respiratory disease studies published between 1993 and 2013, only increased slightly from 2% to nearly 5%. This is particularly concerning considering that African Americans are more prone to developing respiratory afflictions than White Americans.

Why does racial bias in clinical trials occur? A 2020 study titled “Bias and stereotyping among research and clinical professionals: Perspectives on minority recruitment for oncology clinical trials”, showed results from 91 qualitative interviews which were conducted at 5 US cancer centres. The study showed five prominent reasons ranging from the belief that race is irrelevant to clinic-level barriers and negative perceptions towards ethnic and racial minorities.

The study also revealed issues such as perceptions that African Americans were less knowledgeable and were not competent enough to take part in the research study. Another reason for the under-representation of ethnic and racial minorities in clinical trials was their fear of discrimination, exploitation, and lack of resources to be able to access the centres that enlist the subjects for these clinical trials.

Race And Quality Of Treatment

But racial discrimination and bias also occur when patients seek treatment.

a needle inside someone's arm to donate blood
Representational Image

The quality of treatment given to two people might differ according to their race even when checked by the same doctor.

Racial bias in pain assessment and treatment recommendations, and false beliefs about biological differences between blacks and whites”, a study published in 2016 and conducted amongst 222 white medical students and residents is quite revealing. According to this research, about half of the participants who have false beliefs about the biological differences between black people and white people rated black patients’ pain lower as compared to white patients for the same injuries.

Thus, they were also more likely to suggest inappropriate treatment for black patients.  Racial bias against patients is also often seen in the ERs, where the patients from racial and ethnic minorities don’t receive the required medication and treatment. This bias is also prevalent in the diagnosis of conditions as well as long term treatment.

A 2014 study titled “Racial disparities in psychotic disorder diagnosis: A review of empirical literature” by Robert C Schwartz and David M Blankenship showed that doctors were more likely to diagnose black patients with psychotic disorders than with depression. In December 2017, a Canadian Rapper, John River, had to wait 60 days for an emergency procedure. Visiting more than 5 hospitals, he was accused of imagining his symptoms as well as being a drug user or dealer. Sadly stories like this abound.

However, discrimination based on race does not also occur only against medical professionals. According to a survey including more than 800 US physicians conducted by WebMD, Medscape, and STAT, 59% of the physicians had been a victim of offensive remarks about a personal characteristic like their gender, race, and ethnicity with African American and Asian American doctors being most likely to face them. 47% of these physicians were requested by patients to be referred to a different clinician, while 14% stated that they had faced situations with written complaints from the patients about their physical characteristics.

There have been some positive developments though. The NIH Revitalization Act of 1993 mandated NIH to frame guidelines for the inclusion of women and minorities in clinical research. However, clinical research which is conducted under NIH only represents 6% of all clinical trials. Thus we need similar efforts by governments as well as health organizations for mandatory inclusion of racial and ethnic minorities in an equitable ratio in all clinical trials.

Further, strict laws must be brought in punishing those who indulge in racial discrimination in clinical trials, and institutions that involve more marginalized communities in clinical trials must be incentivized.

Apart from changes in legal and regulatory frameworks, steps must be taken to reduce racial bias in healthcare by educating clinicians, staff, and even patients, through workshops and sessions. The raw discrimination and racism in the healthcare system, if not remedied, will continue to the disadvantage of the marginalized communities, who are disadvantaged enough. As we battle this pandemic the need to be aware of such issues is only heightened.

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An ambassador and trained facilitator under Eco Femme (a social enterprise working towards menstrual health in south India), Sanjina is also an active member of the MHM Collective- India and Menstrual Health Alliance- India. She has conducted Menstrual Health sessions in multiple government schools adopted by Rotary District 3240 as part of their WinS project in rural Bengal. She has also delivered training of trainers on SRHR, gender, sexuality and Menstruation for Tomorrow’s Foundation, Vikramshila Education Resource Society, Nirdhan trust and Micro Finance, Tollygunj Women In Need, Paint It Red in Kolkata.

Now as an MH Fellow with YKA, she’s expanding her impressive scope of work further by launching a campaign to facilitate the process of ensuring better menstrual health and SRH services for women residing in correctional homes in West Bengal. The campaign will entail an independent study to take stalk of the present conditions of MHM in correctional homes across the state and use its findings to build public support and political will to take the necessary action.

Saurabh has been associated with YKA as a user and has consistently been writing on the issue MHM and its intersectionality with other issues in the society. Now as an MHM Fellow with YKA, he’s launched the Right to Period campaign, which aims to ensure proper execution of MHM guidelines in Delhi’s schools.

The long-term aim of the campaign is to develop an open culture where menstruation is not treated as a taboo. The campaign also seeks to hold the schools accountable for their responsibilities as an important component in the implementation of MHM policies by making adequate sanitation infrastructure and knowledge of MHM available in school premises.

Read more about his campaign.

Harshita is a psychologist and works to support people with mental health issues, particularly adolescents who are survivors of violence. Associated with the Azadi Foundation in UP, Harshita became an MHM Fellow with YKA, with the aim of promoting better menstrual health.

Her campaign #MeriMarzi aims to promote menstrual health and wellness, hygiene and facilities for female sex workers in UP. She says, “Knowledge about natural body processes is a very basic human right. And for individuals whose occupation is providing sexual services, it becomes even more important.”

Meri Marzi aims to ensure sensitised, non-discriminatory health workers for the needs of female sex workers in the Suraksha Clinics under the UPSACS (Uttar Pradesh State AIDS Control Society) program by creating more dialogues and garnering public support for the cause of sex workers’ menstrual rights. The campaign will also ensure interventions with sex workers to clear misconceptions around overall hygiene management to ensure that results flow both ways.

Read more about her campaign.

MH Fellow Sabna comes with significant experience working with a range of development issues. A co-founder of Project Sakhi Saheli, which aims to combat period poverty and break menstrual taboos, Sabna has, in the past, worked on the issue of menstruation in urban slums of Delhi with women and adolescent girls. She and her team also released MenstraBook, with menstrastories and organised Menstra Tlk in the Delhi School of Social Work to create more conversations on menstruation.

With YKA MHM Fellow Vineet, Sabna launched Menstratalk, a campaign that aims to put an end to period poverty and smash menstrual taboos in society. As a start, the campaign aims to begin conversations on menstrual health with five hundred adolescents and youth in Delhi through offline platforms, and through this community mobilise support to create Period Friendly Institutions out of educational institutes in the city.

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A student from Delhi School of Social work, Vineet is a part of Project Sakhi Saheli, an initiative by the students of Delhi school of Social Work to create awareness on Menstrual Health and combat Period Poverty. Along with MHM Action Fellow Sabna, Vineet launched Menstratalk, a campaign that aims to put an end to period poverty and smash menstrual taboos in society.

As a start, the campaign aims to begin conversations on menstrual health with five hundred adolescents and youth in Delhi through offline platforms, and through this community mobilise support to create Period Friendly Institutions out of educational institutes in the city.

Find out more about the campaign here.

A native of Bhagalpur district – Bihar, Shalini Jha believes in equal rights for all genders and wants to work for a gender-equal and just society. In the past she’s had a year-long association as a community leader with Haiyya: Organise for Action’s Health Over Stigma campaign. She’s pursuing a Master’s in Literature with Ambedkar University, Delhi and as an MHM Fellow with YKA, recently launched ‘Project अल्हड़ (Alharh)’.

She says, “Bihar is ranked the lowest in India’s SDG Index 2019 for India. Hygienic and comfortable menstruation is a basic human right and sustainable development cannot be ensured if menstruators are deprived of their basic rights.” Project अल्हड़ (Alharh) aims to create a robust sensitised community in Bhagalpur to collectively spread awareness, break the taboo, debunk myths and initiate fearless conversations around menstruation. The campaign aims to reach at least 6000 adolescent girls from government and private schools in Baghalpur district in 2020.

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A psychologist and co-founder of a mental health NGO called Customize Cognition, Ritika forayed into the space of menstrual health and hygiene, sexual and reproductive healthcare and rights and gender equality as an MHM Fellow with YKA. She says, “The experience of working on MHM/SRHR and gender equality has been an enriching and eye-opening experience. I have learned what’s beneath the surface of the issue, be it awareness, lack of resources or disregard for trans men, who also menstruate.”

The Transmen-ses campaign aims to tackle the issue of silence and disregard for trans men’s menstruation needs, by mobilising gender sensitive health professionals and gender neutral restrooms in Lucknow.

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A Computer Science engineer by education, Nitisha started her career in the corporate sector, before realising she wanted to work in the development and social justice space. Since then, she has worked with Teach For India and Care India and is from the founding batch of Indian School of Development Management (ISDM), a one of its kind organisation creating leaders for the development sector through its experiential learning post graduate program.

As a Youth Ki Awaaz Menstrual Health Fellow, Nitisha has started Let’s Talk Period, a campaign to mobilise young people to switch to sustainable period products. She says, “80 lakh women in Delhi use non-biodegradable sanitary products, generate 3000 tonnes of menstrual waste, that takes 500-800 years to decompose; which in turn contributes to the health issues of all menstruators, increased burden of waste management on the city and harmful living environment for all citizens.

Let’s Talk Period aims to change this by

Find out more about her campaign here.

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A former Assistant Secretary with the Ministry of Women and Child Development in West Bengal for three months, Lakshmi Bhavya has been championing the cause of menstrual hygiene in her district. By associating herself with the Lalana Campaign, a holistic menstrual hygiene awareness campaign which is conducted by the Anahat NGO, Lakshmi has been slowly breaking taboos when it comes to periods and menstrual hygiene.

A Gender Rights Activist working with the tribal and marginalized communities in india, Srilekha is a PhD scholar working on understanding body and sexuality among tribal girls, to fill the gaps in research around indigenous women and their stories. Srilekha has worked extensively at the grassroots level with community based organisations, through several advocacy initiatives around Gender, Mental Health, Menstrual Hygiene and Sexual and Reproductive Health Rights (SRHR) for the indigenous in Jharkhand, over the last 6 years.

Srilekha has also contributed to sustainable livelihood projects and legal aid programs for survivors of sex trafficking. She has been conducting research based programs on maternal health, mental health, gender based violence, sex and sexuality. Her interest lies in conducting workshops for young people on life skills, feminism, gender and sexuality, trauma, resilience and interpersonal relationships.

A Guwahati-based college student pursuing her Masters in Tata Institute of Social Sciences, Bidisha started the #BleedwithDignity campaign on the technology platform Change.org, demanding that the Government of Assam install
biodegradable sanitary pad vending machines in all government schools across the state. Her petition on Change.org has already gathered support from over 90000 people and continues to grow.

Bidisha was selected in Change.org’s flagship program ‘She Creates Change’ having run successful online advocacy
campaigns, which were widely recognised. Through the #BleedwithDignity campaign; she organised and celebrated World Menstrual Hygiene Day, 2019 in Guwahati, Assam by hosting a wall mural by collaborating with local organisations. The initiative was widely covered by national and local media, and the mural was later inaugurated by the event’s chief guest Commissioner of Guwahati Municipal Corporation (GMC) Debeswar Malakar, IAS.

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