SEPTEMBER 2021 | POLICY JOURNAL
THE RACE ACROSS THE POND INITIATIVE Women of Color in the Healthcare System Series SYSTEMIC RACISM, INTERSECTIONAL DISCRIMINATION AND INEQUITIES IN FRANCE’S HEALTHCARE SYSTEM
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Women of Color Advancing Peace, Security & Conflict Transformation
WOMEN OF COLOR ADVANCING PEACE AND SECURITY, AND CONFLICT TRANSFORMATION THE RACE ACROSS THE POND INITIATIVE Women of Color in the Healthcare System Series
In collaboration with WCAPS France
Policy Paper:
Systemic Racism, Intersectional Discrimination, and Inequities in France’s Healthcare System September 2021
Women of Color in Peace, Security and Conflict Transformation The Race Across the Pond Initiative: Women of Color in the Healthcare System Series
TABLE OF CONTENTS
Edito ....................................................................................................................................... 3 About Section The Race Across the Pond Initiative .................................................................................... 5 The Women of Color in the Healthcare System Series ....................................................... 5 The WCAPS French Chapter ................................................................................................. 5 The Authors ........................................................................................................................... 6 The Translator and the Editors ............................................................................................. 7 SYSTEMIC RACISM, INTERSECTIONAL DISCRIMINATION, AND INEQUITIES IN FRANCE’s HEALTHCARE SYSTEM Introduction ........................................................................................................................... 8 PART I - Health Inequities: Racialized & Minority Groups (RMG)’s Access to Health Care 1. Legal Framework ............................................................................................................... 9 2. Discrimination against RMG’s: Systemic, Structural and Institutional Inequalities . ... 10 a) Medical deserts ................................. .................................................................. 10 b) The Burden of Procedures and Statute .............................................................. 11 c) Ethnoracial Discrimination: The Beliefs of Practitioners ................................... 12 d) Case examples ..................................................................................................... 13 .
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PART II - Principle of Health Care Quality 1. Lack of Representation & Inclusiveness in Biomedical Research & Clinical Trials ..... 15 2. Exacerbation of Inequities in the Context of the COVID-19 Pandemic ........................ 18 3. Inadequacy of Certain Therapies and Technologies: The Oximeter’s Case ................ 19 4. Racism, Discrimination and Stereotypes in Medical Practices and Patient Care: The Mediterranean Syndrome .................................................................................................... 20 PART III - Anti-Racism and Intersectionality Approach: A Series of Recommendations for Increased Equity and Inclusiveness in the French Healthcare System ................... 23 Glossary ............................................................................................................................... 25 References ........................................................................................................................... 27
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EDITO Dear Colleagues, It is with great honor that I introduce the first policy paper of the WCAPS Race Across the Pond Initiative (RAP Initiative): Systemic Racism and Intersectional Discrimination in France’s Healthcare System. This first policy paper launches the RAP Initiative’s policy papers series Institutional Racism and Discrimination in Healthcare Systems Globally, which will continue to be published over the coming months. The series explores how racism and discrimination affect communities of color’s health, security, and quality of life across the world, particularly for women and girls, and what we can do to ensure more equality, equity, and justice for all. Racism, discrimination, and biases are spread out in our society. They are deeply embedded in our history, our structures, our way of thinking and our social interactions, at all societal levels. And, as such, they manifest in each and every sphere of our society. It takes courage, time, and dedication to deconstruct and unlearn toxic practices and behavioral mechanisms that we have been internalizing throughout our lives, oftentimes since early childhood. Because racism is not natural and race is a social construct, undertaking this deconstruction is an absolute priority. Individually and collectively. It is our responsibility. Racism is not an opinion. It is a crime. Our society, our government, and our institutions have the responsibility to work their hardest to address it. I repeat. Racism is not an opinion. It is a crime! Yet, for Black and Brown people, it is a reality that permeates all aspects of their daily life and directly threatens their own lives and security. Women and girls of color are particularly affected, as they hold the double burden of discrimination due to their gender and their race. They are potentially holding additional burdens due to their socioeconomic situation, religion, age, sexual orientation, disability, and/or other factors of discrimination. When talking about gender inequality in France (and many other countries), we often refuse to recognize the intersectionality of discrimination women of color face. By refusing to recognize the complexity and effects of the intersectional discrimination they face, we actively contribute to maintain and foster their invisibilisation and the discrimination against them.
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If we really want equality – and I know our French society is committed to it – we need to ensure equity. If we aim for equity, we need to talk about justice. And if we speak about justice, we need to look at our society honestly and acknowledge how racism and discrimination permeate all spheres of our society, including our healthcare system. It is not a sign of weakness to recognize its weakness; it is a sign of strength and incredible courage! Public health is a common good. France has one of the most renowned healthcare systems globally, yet there is still a great need for improvement to ensure more equity, diversity, and inclusion. We hope this paper will provide some areas for reflection and concrete action to our policy-makers, political leaders and institutions, in designing more diverse, inclusive, and actively anti-racist healthcare policies. I want to sincerely thank the fantastic authors and WoC in the Healthcare System Series’ researchers, Sherihane Bensemmane and Yasmine El Addouli, for their time, investment, scientific rigor, and continuous enthusiasm in developing this document. I enjoyed every bit of our exchanges, reflection, and writing process. The health sector is fortunate to count on brilliant women like you. I also want to thank the amazing RAP Initiative’s teams for their key support and contribution, and particularly Laëtitia K.M. Diatezua, Rita Stephan, and Melina Villeneuve, for serving as editors and helping finalize this document, Sonia Osmani for leading the translation work, and Kynnedi Henry for doing the final formatting. Finally, I want to thank Undersecretary of State Bonnie Jenkins for being a visionary leader in creating WCAPS and for letting me create and develop this very unique project, the Race Across the Pond Initiative. Thank you for your trust and friendship. We hope you will enjoy the reading of this first RAP policy paper publication and the future ones to come. Saara Bouhouche Founder and Chair of the Race Across the Pond Initiative Director of WCAPS France
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AUTHORS SHERIHANE BENSEMMANE (Main Author) Sherihane Bensemmane is a French Researcher / Subject Matter Expert at the RAP Initiative’s WoC in the Healthcare System Series. She holds Master's degrees in neuroscience, public health, and political science. She currently works as a scientist at the Belgian Health Institute. Previously, she worked as a scientific advisor at the European Society of Intensive Care Medicine and as a collaborator at the European Social Observatory. She has experience in field research in Bolivia, where she investigated barriers to accessing healthcare services in the context of HPV infection. She is also an active member of several non-profit organizations intervening in the field of women's rights, sexual health, and migrant health.
YASMINE EL ADDOULI (Main Author) Yasmine El Addouli is a French Researcher / Subject Matter Expert at the RAP Initiative’s WoC in the Healthcare System Series, and a team member of WCAPS France. She is a French registered nurse, where she has focused on different units within the medical field. She recently graduated with a Masters in Public Health and Global Health from the Université de Montréal - École de Santé publique (ESPUM), in Canada. During her studies, Yasmine has worked in Canada as a Research Visitor at Women’s Health in Women’s Hands, and Community Advisor for the Community-Based Research Center. Additionally to the RAP Initiative, she is also a member of WCAPS France. Yasmine is committed to bringing French and global perspectives in racism and discrimination in health care’s conversations.
SAARA BOUHOUCHE (Editor in Chief, Author) Saara Bouhouche is the Founder and Chair of the Race Across the Pond Initiative and the Director of WCAPS France Chapter. She is a French Anti-Racism & Gender Equality Advocate and a Humanitarian, Peace & Security Expert. Additionally to her role at WCAPS, she is also a Strategic Advisor for Women for Women France. Saara has over 18 years’ experience, gathering expertise in anti-racism and social justice, gender equality, humanitarian and development affairs, migrations, peace, security, and conflict transformation. She has a strong background leading emergency response operations in conflict-settings globally. Previously, she has founded OUAT? Productions, a French non-profit aimed at promoting intercultural dialogue through arts, fighting exclusion and extreme poverty, and supporting social cohesion and inclusion in France. She has lived and worked in Europe, Middle East, Africa, Asia, North America & the Caribbean.
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TRANSLATOR SONIA OSMANI is a French translator with a B.A. in Foreign Languages in English and Spanish, and a M.A. in Tourism Management. Passionate traveler, she gained experience working in different countries, including the USA, Mexico and Canada. Sonia has a strong background working in the tourism industry and has conducted translation work since her early years at the University. She is currently developing tourism and translation projects and aims to pursue her career combining her two passions for travel and languages.
EDITORS LAËTITIA K.M. DIATEZUA is a global health consultant specializing in infectious disease surveillance and outbreak preparedness. She supported more than a dozen global health security, AMR, and HIV/AIDS programs in Africa and the Middle East; and ran over 30 STEM workshops for 300 girls in Latin America, Sub-Saharan Africa, and Central Europe. Since the beginning of the COVID-19 pandemic, she has authored several publications and podcasts on COVID-19. Laëtitia is a 2020-2021 Next Gen Global Health Security Network alumna, a Women in Global Health Operation 50/50 Health Security Expert, and an alumna of The Global Health Corps. Laëtita is a team member of the RAP Initiative’s WoC in the Healthcare System Series.
RITA STEPHAN is a Research Fellow at The Moise A. Khayrallah Center at North Carolina State University and the Regional Coordinator for religious and ethnic minorities in the Middle East at USAID. Previously, she was the Director of the Middle East Partnership Initiative and the Director of Data Analytics at the US State Department, and a survey statistician at the Census Bureau. Her Ph.D. is in Sociology with a focus on Women’s and Gender Studies. Her publications focus on Arab Americans and women’s activism in the MENA Region. Rita is a member of the RAP Initiative team.
MÉLINA MALAÏKA VILLENEUVE is the co-founder and research director of Demilitarise Education (dED_UCATION), a Manchester-based NGO working to end the unethical links between the global arms trade and UK universities. The NGO promotes sustainable and ethical research endeavours for a lasting positive peace, as opposed to continuing the questionable relationships that exist in the area of arms manufacturing research. In addition to her work at dED_UCATION, Mélina is also a screenwriter, podcaster, and community organiser. She is a founding member of the UK chapter of WCAPS (WCAPS-UK), and serves as the UK Chapter’s chair of social media and communications. Melina is also a RAP Initiative’s Editorial Review Board Member.
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ABOUT THE RACE ACROSS THE POND INITIATIVE The Race Across the Pond Initiative (RAP Initiative) is a WCAPS’ international project, which explores, from an intersectional lens (e.g. gender, sexual orientation, religion, age, disability...), how constructed race and racism impact the lives and human security of communities of color globally, particularly for women and girls, and threaten international peace and security. The RAP Initiative aims to place the topic of racism at the center of national and international peace and security debates and discussions. At the RAP Initiative, we raise the voices of women of color who are leading change in their countries and beyond, we reflect on how to challenge the collective and individual toxic mentalities across cultures, and we discuss experiences, lessons learned and strategies to combat racism, white supremacy and intersectional discrimination. The RAP Initiative provides a safe space for reflection, dialogue and action to foster mutual understanding, sustainable peace, and inclusive security for all, by leveraging multiple resources and energies, and fostering synergies with local, national and international actions and actors. The Women of Color in the Healthcare System Series The RAP Initiative is primarily structured around Series (topic-based projects). The Women of Color in the Healthcare System Series explores how individual and collective behaviors and systems perpetuate racial discrimination and impact the health of communities of color, in particular women and girls of color, at national, regional and international levels. This series is a platform of knowledge production and exchange, and provides a space to reflect on strategies and solutions to tackle inequalities and inequities in healthcare globally. ABOUT WCAPS FRANCE WCAPS France seeks to advance the leadership and professional development of women of color in the fields of peace and security in France and continental Europe, and to promote anti-racism, diversity and inclusion policies in national affairs and foreign affairs. WCAPS France embodies the principles of “Liberté, Egalité et Fraternité“, and, as such, provides a safe and supporting forum for our members and allies that encourages stimulating discussions, elevates the diversity of voices of women of color in peace and security in France and beyond, and fosters an inclusive and active professional network. WCAPS France aims to challenge toxic mentalities grounded in gender inequality, racism and discrimination, and enhance peaceful dialogue, inclusive security and social cohesion.
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SYSTEMIC RACISM, INTERSECTIONAL DISCRIMINATION, AND INEQUITIES IN FRANCE’S HEALTHCARE SYSTEM
Preambule In France, the inequity that affects racialized and minority groups (RMGs) is a difficult subject to tackle and even more difficult to investigate. The French Constitution requires that the State “ensures equality before the law of all citizens without distinction of origin, race or religion.” Despite the 1978 ban on the collection of data relating to “ethnic origin or race,” confirmed by the Constitutional Council in 2007, some exemptions authorizing ethnic statistics under strict conditions are possible, especially for statistical or scientific research purposes.1 These exemptions allowed some studies to be conducted on the effect of discrimination on RMGs in France; however, these studies are limited in number, scope, and relevant data compared to the extensive field of research related to racism in healthcare that needs to be explored. These lack of studies are even more alarming when considering that RMGs represent nearly 20% of the French population. This policy paper focuses on racial, socio-economic, and cultural discriminations RMGs endure in accessing quality health care in France; and the inadequate response to their health needs as a result. It explores how racism and intersectional discrimination contribute to the deterioration of both health status and quality of life for RMGs. The first part of this document studies the healthcare access issue, while the second part centers on the healthcare quality issue.
1
Data acquisition relating to the name, to the geographical origin, nationality before obtaining French nationality or the sense of belonging is possible following the recommendations of the CNIL (Commission Nationale de l’Informatique et des Libertés).
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PART I - HEALTH INEQUITIES: RACIALIZED AND MINORITY GROUPS’ ACCESS TO HEALTH CARE Authors: Sherihane Bensemmane*, Saara Bouhouche 1. LEGAL FRAMEWORK The French law provides a set of measures to ensure the protection of patients' rights, access to health care and prevention services without profiling or discrimination. Based on a collective approach of contribution and redistribution of resources, the law extends common social protection for all people who enjoy lawful French residency or citizenship. Health insurance entitles the holder to healthcare and treatment free of charge. For low-income individuals, the "Complémentaire Santé Solidaire" (CSS), a social assistance, is granted upon request, reducing direct health-related expenses. Since 2016, all residents or legal migrant workers are eligible to benefit from another program, called the "Protection Universelle de Maladie" (PUMa). Undocumented migrants2 have the right to access basic health services, under specific conditions, with the assistance of the State Medical Aid, “Aide Médicale d'État” (AME). They are also eligible to access emergency services and basic health care through the Permanent Health Care Access, “Permanence d'Accès aux Soins de Santé (PASS)”. However, the “Premiers Pas” survey found that, in fact, most migrants do not benefit from either assistance. Asylum seekers are directed to the “PASS” meanwhile their files receive thorough examination. Lastly, refugees can benefit from the PUMa. The difficulty to navigate the French administrative system represents a key challenge. Prevalent obstacles to accessing healthcare services include complex administrative processes, limited institutional resources available (e.g., human resources, time), lack of interpreters, lack of dedicated financial resources, and ineligible legal status of beneficiaries. Policy recommendations: ● Simplifying the administrative process for obtaining health care coverage, ● Increasing the investment in, and funding to, health care institutions,
2
Note: One of the biases and prejudices French people from racialized groups may face is to be assimilated to migrant populations, yet their legal status and associated laws do not allow any assimilation.
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● Strengthening institutions’ human resources (interpreters, training, and other essential staff), ● Monitoring inequalities, inequities, and discrimination in access to administrative and institutional services and resources.
2. DISCRIMINATION AGAINST INSTITUTIONAL INEQUALITIES
RMGS:
SYSTEMIC,
STRUCTURAL,
AND
Health care quality and accessibility are generally remarkable in France. However, significant disparities and discrimination still exist regarding access, coverage, and costs of patients' health needs. The situation is worse in rural areas, and the outskirts of large cities where RMGs and immigrants3 are disproportionately represented and affected. Furthermore, the discriminatory attitudes of healthcare professionals and providers (i.e. staff and establishment) constitute significant barriers to accessing healthcare services for RMGs -- Sub-Saharan, North African and Asians in particular. a) Medical deserts Medical deserts are territories in which access to health care is difficult, often corresponding to rural areas or outlying suburbs. This concept encompasses distance to healthcare centers, lack of doctors and other health professionals (e.g., nurses, physiotherapists, medical analysis laboratories), and limited supply of care service for special need populations. A concentration of RMGs lives in the biggest medical deserts in Metropolitan France and Territories (Ile de France/Seine Saint de Denis, Guyane, Martinique, Guadeloupe, Mayotte, etc.). This phenomenon is partly linked to former integration policies, public immigration policies and ghettoization, which pushed RMGs into precarious living conditions in remote areas, far from public services and urban centers while creating socio-economic exclusion. The government has exerted efforts to increase the number of health professionals by proposing to eliminate the numerus clausus to enter the faculty of medicine. However, these efforts are not likely to be visible for several years. In fact, the increased numerus clausus does not guarantee a fair distribution of doctors in the territory nor motivate young doctors to settle in these regions. Additionally, language barriers might persist even if the number of doctors increases due to the lack of interpreters available. Access to healthcare is difficult for those whose mother tongue is not French, resulting in 3
Definition of INSEE “[…] An individual continues to belong to the immigrant population even if he becomes French by acquisition”. https://www.insee.fr/fr/metadonnees/definition/c1328
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experiencing frustration, negative cognitive biases, and discriminations. Some doctors tend to avoid or leave these geographical areas due to their limited capacity and inability to interact effectively with some of their patients. Telemedicine, a provision of health services by the means of Information and Communication Technologies, is considered one of the viable strategies to improve access to health care for the populations living in medical deserts. However, additional barriers arise. Not everyone has access to a computer or smartphone to conduct teleconsultation, and the internet connection is not optimal everywhere, while individuals’ digital literacy is limited4 -notwithstanding that telemedicine cannot replace physical examination. The example of Seine-Saint-Denis, the biggest medical desert in metropolitan France, shows how COVID-19 highlighted discrimination against RMGs due to precarious socio-professional situations and reduced their access to healthcare services. The vaccination campaign left out people with low digital literacy, French proficiency, and great distance from health care providers. The Health Department of Seine-Saint-Denis, recorded the highest COVID- related mortality rate in France.
b) The Burden of Procedures and Statutes Beyond the legal limitations and the lack of accessibility, RMGs suffer from hurdles created by rigid administrative staff who either enforce the implementation of harsh and unfair measures or block and complicate existing procedures to limit or delay RMGs’ access to services. Moreover, obtaining the "Complémentaire Santé Solidaire" (CSS) does not guarantee access to care or equitable service. CSS coverage taints the patients in ways that reveal their precarious situation to doctors, who, although it is illegal, sometimes refuse to take care of patients under the guise of administrative and bureaucratic pressure from the health insurance funds (justification of the care pathway), the long repayment period, the cumbersome administrative process. Having the state medical aid represents a source of potential direct and indirect discrimination for RMGs, who also represent a majority of vulnerable population. Moreover, some patients have reported direct 4
Ability to use computer tools with ease without the assistance of a third party.
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religious and racial discrimination, some doctors not even trying to hide behind laborious administrative justication to refuse to provide medical care. Some of the policy recommendations identified include: ● Distribute professionals and health centers based on needs and territorial specificities. ● Strengthen the pre-existing structures in the aforementioned medical deserts in terms of human, financial, and material resources. ● Set up a system of language interpretation that is available systematically during medical consultations at the request of the patient or the health care professional. c) Ethnoracial Discrimination: The Beliefs of Practitioners Prejudice in the medical profession is also prevalent on the staff level. Some CSS beneficiary patients are often denied consultation or considered a non-priority because doctors perceive them as “assisted” or “profiteers.” Other times, healthcare professionals delay providing care due to stereoping patients and pre-assigning supposed negative behaviours and moral characteristics (ability to comply, capacity to understand a treatment, to understand the gravity of their symptoms, or to take care of themselves). They judge patients’ ability to comply or understand the importance of their symptoms according to the latters’ ethnic attributes, body habitus (way of moving or carrying oneself), or low socio-economic backgrounds. According to a European Union survey on minorities and discrimination, most members of RMGs acknowledge being discriminated against based on their ethnic origin, skin color (especially people with black skin or of sub-Saharan origin), religion (in particular veiled Muslim women), their surname (sounding Arabic, Asian, or sub-Saharan), or their accent. It is noteworthy that the Roma people were among the RMGs who reported facing discrimination by health care practioners. Discrimination in health care is multifaceted, but mostly attributable to RMGs’ actual or perceived ethnic origin, historical heritage of immigration and ghettoization public policies, and a culturalist vision of medical needs. Indeed, some of RMGs’ health problems are often interpreted as due to cultural specificities and inherent in the cultural origin of the patients. The resulting inequities are reinforced by not taking into consideration social determinants of health (such as income, housing, geographic location, education, and food shortage) during the initial investigation of medical history. This type of discrimination also influences medical care, the relationship with
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the patient, symptom interprtation, and access to health care. It has repercussions on individuals’ health and seriously obstructs patients’ rights. d) Case examples Lead poisoning among Sub-Saharan Africans: Lead poisoning, acute, or chronic intoxication by lead are some of the social inequalities that are determined by the living place and have an impact on a person's health. Initially, RMGs’ illness was considered as cultural specificities affecting particularly individuals from sub-Saharan Africa. Patients’ housing and geographic location were not taken into account but the misinterpretation of this intoxication as a cultural trait dismissed a severe health problem. Immigrants’ Diabetes: When immigrant individuals are diagnosed with diabetes, practitioners often behove the situation as being triggered by the patients lifestyle (e.g., poor diet and lack of physical activity). These factors are immediately judged on cultural bases without considering their medical history, their financial barriers, their socioeconomic situation, or their geographic environment. Additionally, a change in diet is not always possible if the person does not have the financial resources, cannot increase physical activity, cannot access sports facilities (due to price or distance), or does not have a steady job to afford these changes. HIV-Positive Guyanan Patients: In the French Territory Guyana, some healthcare professionals do not take the time to explain to Guyana patients living with HIV about their infection. Sometimes, they do not prescribe the appropriate treatments assuming that patients would not have good medical compliance or sufficient understanding because of their “ethno-racial affiliation.” African Maternal health: Women perceived as “African” (immigrants, women of African heritage and/or black women) are more often referred to a caesarean section than white women and other groups of women. This is due to racial stereotypes on the size of their basins, which would be smaller because of supposedly ethnic or genetic factors. Many gyneco-obstetric studies on this topic highlight a pelvic size which may indeed be smaller than usual for African women born and / or raised in Sub-Saharan Africa who have immigrated in France, this is not the case for other women categorized as "African", particularly those born in France. Indeed, the size of the pelvis can be influenced by various physiological, environmental and / or medical factors such as puberty, undernutrition, early childbearing, and polio. Racial amalgamation contributes to inadequate care for the maternal health needs of so-called “African” women and women of African heritage for whom the use of caesarean section is not justified.
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Based on these findings, policy recommendations include: ● Set up coaching sessions and monitoring and evaluation tools to prevent prejudice and question conscious and unconscious biases, at both health institutional and individual levels, ● Establish standardized methods for patient triage in hospitals, ● Improve access to healthcare by reducing administrative procedures, ● Train staff in the social determinants of health, ● Improve intercultural skills and raise awareness about patients’ diversity among health care professionals and their administrative staff.
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PART II - PRINCIPLE OF HEALTH CARE QUALITY Authors: Yasmine El Addouli*, Saara Bouhouche “The discrimination to which people, who are perceived as of non-European origin, are exposed, through their referrals, are supported by official data and research: Differences in treatment based on origin are a large-scale phenomenon. Deploying in all spheres of social life, these practices, sometimes openly discriminatory, constitute --for immigrants, descendants of immigrants, or people who are simply perceived as such-- daily pressures with lasting and deleterious effects on the life course and the social relations of a large part of the population residing in France” (France’s Defender of Rights, 2020). 1. LACK OF REPRESENTATION AND INCLUSIVENESS IN BIOMEDICAL RESEARCH AND CLINICAL TRIALS In general, RMGs, including women, are underrepresented in biomedical research. A large majority of clinical study participants do not include RMGs.This situation has direct and indirect consequences on the population’s health since some therapies and medical devices, used in a standardized way, are not suitable for everyone. This oversight impacts the therapeutic support provided to RMG populations even today. Although France is very largely affected by intersectional discrimination and structural inequities in health care, notably with a lack of representation of RMGs in biomedical research, questioning the discriminatory effects of racialization in health is rarely discussed or documented in France. Unlike in the United States and Great Britain, the topic is still considered taboo. As a consequence, additionally to the French resources, documentations and research, when comparisons were relevant and possible, this paper relied on the assistance of foreign scientific and empirical literature as illustrations. This document is an invitation to further reflect and understand how inequity is produced in public health. In order to remedy the lack of representation of RMGs in biomedical research, researchers such as Steven Epstein argue in favor of oversampling racialized groups and women. Along the efforts of many social movements to fight for decolonization, equal civil rights, social justice, and anti-discriminations, biomedical research began to focus, at the end of the 80s in North America and in the beginning of the 90s in France, on the lack of representativeness of women and “ethnic groups” in clinical trials.
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However, structural transformation in the field is still a major priority and the needs remain important. In the United States for example, The National Institutes of Health (NIH) published in 1993 a plea - The Revitalization Act - in favor of the women and “ethnic groups” inclusion in clinical trials. It even went further to make their inclusion a criterion for funding research.5 Despite these efforts, Risch. et al. posit that ten years later, most studies conducted through a random sample in the United States obtain, on average, a sample population of 75% Caucasian (who are non-Hispanic). Other researchers reached similar conclusions, which led to reviewing the NIH Revitalization Act in 2009 and requiring all clinical trials to report the ethnicity of their participants. Despite this decision, to this day, the literature continues to warn that medical research still has major difficulties in pursuing the goals of the NIH. Furthermore, a literature review (Burchard and Al, 2015) of articles on the pulmonary illnesses covering the period from 1993 to 2013 shows that, in the studies not financed by the NIH, the proportion of participants from “ethnic groups” increased only by 1.9% in the 20-year period. CAUSES AND CONSEQUENCES It is important to stress that RMGs and women, especially non-white women, have been excluded from biomedical research. In many cases, excuses and stereotypes were used to justify their exclusion from samples and research. For women in particular, the main argument was (and often continues to be) biological (hormonal fluctuation, menopause, and pregnancy chances during the study), and the related stereotyping of women as less “stable” subjects than men in the eyes of researchers. The under-representation of RMGs in biomedical research is the result of a multi-causal process, which is not studied in an intersectional and exhaustive manner. Furthermore, penalty are not imposed for missing out on the fundamental and combinatorial factors of discrimination, inequalities, and inequity on these populations. Racism and discriminating discourses are pervasive in French society and are found in all spheres (structural, institutional, collective, and individual). They are also expressed in a conscious and assertive manners (discriminatory policies, discourses, and acts that are racist and supremacist, sexist, islamophobic, and homophobic). Alternatively, they are more common to be expressed insidiously and unconsciously through collective 5
NIH Revitalization Act .Subtitle B:§131-133; 1993.
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behaviors, individual practices, and popular beliefs. Finally, they proliferate with reproducing biases, and stereotypical and discriminating patterns. The health system as a whole is no exception; discrimination, ethnic and racial inequities in the health sector are prevalent in France but still remain considered anecdotal. Alternatively, systemic racism has become a proven cause and target of remedial action in the United States or Great Britain. This lag is due to the lack of understanding in France of the role of social determinants, socio-economic disparities, the colonial heritage in the French society and the impact of colonization in countries of origin of a large part of RMGs. The production mechanisms, and dissemination and establishment of social norms are based on a racialization that is derived from a culture of whiteness in healthcare. The under-representation of RMGs also comes from the lack of unanimity in the scientific community regarding the use of ethnic data in biomedical clinical trials. Some researchers believe that the inclusion of ethno-racial data could be a great way to reduce health inequities. Others believe emphasizing individualized care is more important. However, the inclusion of such data would allow, according to proponents, to explore whether individuals sharing common ethnic or geographical characteristics are indeed more vulnerable to certain diseases compared with individuals with different affiliations. Indeed, the use of such data can facilitate the identification of the most vulnerable groups to certain health issues, and be able to protect them adequately. For example, the use of ethnoracial data, in North America, has made it possible to better understand the disparities in the treatments of women with uterine fibroids. A 2010 article (Jacoby et al.,) on Americans and a recent article (Murji et al.,) on Canadians, show that black and East Asian women are exposed to severe uterine fibroids at higher rates and younger ages than the rest of the female population, especially white women. The extent and risk of the disease on these women necessitate close monitoring of these groups compared with other women. However, unlike the United States or Great Britain, the collection of ethnoracial data in France is not common. Limitations are associated with contravening Article 1 of the Constitution which stipulates “equality before the law of all citizens without distinction of origin, race or religion.” Consequently, there is a strong legal limitation on the use of ethno-racial statistics. As mentioned before, certain exceptions for statistical and research purposes are possible under certain well-defined conditions. However, this legal context prevents the inclusion of such data in the french medical research field.
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2. EXACERBATION OF INEQUITIES IN THE CONTEXT OF THE COVID-19 PANDEMIC Since the beginning of the pandemic, several countries, using ethno-racial data in scientific framework, have documented the inequities relating to COVID-19. The pandemic has affected RMGs and migrants, particularly women, more severely than other groups. The available scientific literature also shows that the burden of COVID-19 among RMG workers is greater than white workers. The 2020 Urban Institute report on American society and the British scientific article on the SN Comprehensive Clinical Medicine (2020) explain that RMG workers are overrepresented in difficult jobs. These professions, often with insecure contracts, are considered frontline, which means they are essential to the functioning of the society, despite health measures, especially during complete or partial lockdown. Certain professions (eg. nurse and auxiliary nurse, hostess, cashier, maintenance, or cleaning staff), mostly occupied by women, are at higher risk of exposure. These conditions played a preponderant role in the extent of these individuals’ infection with COVID-19 and the excess morbidity and mortality among these populations. In France, the COVID-19 health crisis reopened the debate on the need for ethnoracial data and gender parity consideration in research samples. This would make it possible to document the influence of COVID-19 on the health of the population in all with respect to its diversity while reducing structural and behavioral inequities in proposed therapeutic care. In 2021, an article in the "Revue d'épidémiologie" a French journal of epidemiology and public health, proposed the inclusion of ethnic data in France. Despite the meager data available in France, the existing documentation reveals that mortality (all causes combined) of people born in France increased by 22% between March and April 2020.6 Over the same period, mortality among people born abroad was much higher. It increased by 54% for individuals born in North Africa, 91% for those born in Asia, and 114% for people born in sub-Saharan Africa, five times more than the general population.6 Building on these efforts, this paper highlights the disparities exacerbated by the pandemic. More than a year after the health crisis started, we believe the time has come to take stock of authorities’ management of the pandemic. The burden suffered by RMGs and particularly non-white women is undeniably questionable and blameworthy.
6
Rey G. (2021).Éditorial [Éditorial].Revue d'épidémiologie et de santé publique, 69(2), 63–64. https://doi.org/10.1016/j.respe.2021.02.001
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If health inequities were better understood before the pandemic, and vulnerable groups were correctly identified, studied, and protected, it is likely that we could have more effectively limited their risks of overexposure to COVID-19. Since the health crisis continues, we believe it to be essential to urgently document vulnerable populations’ exposure and rates of inflection, in particular RMGs, especially women, people facing great precariousness, and migrants. This scientific documentation will contribute to identify vulnerable groups and confront French decision-making authorities with scientific and empirical data. By informing public health policy-makers, the ultimate goal is to urgently contribute to the reduction of the excess mortality risks incurred by RMG communities. Without understanding the specific historical, social, economic, geographic, political, ethnic, and cultural factors, these vulnerable groups and sub-groups will remain overexposed to COVID. Despite health policies and vaccination campaigns, RMGs will continue to be affected more severely than the rest of society with short, medium, and long term impacts. Furthermore, they are likely to suffer for years to come, until, at least, the health and socio-economic crisis is fully under control.
3. INADEQUACY OF CERTAIN THERAPIES AND TECHNOLOGIES: THE OXIMETER’S CASE The oximeter is a tool created in 1972 to quantify the rate of oxygen saturation in individuals. This device is used daily in healthcare settings and its measurement corresponds to one of the physiological constants or “vital signs” monitored as a priority and used for diagnostics. As early as the 1990s, researchers discovered that oximeters did not work properly on non-white patients. Even today, most of these devices do not correctly estimate the oxygen saturation of this population. The darker the skin, the less reliable the values, especially when the oxygen saturation is below 80%. Indeed, oximeters tend to overestimate measurements on the black population and this phenomenon is exacerbated at the time of hypoxia, which can put the patients in serious life danger. In a US study (Bickler et al, 2005) about measurement biais focusing on the effects of skin pigmentation, the researchers highlight that over a period of 18 years of testing pulse oximeters' accuracy, the great majority of volunteer subjects were white. They also infer that this probably have been the case for most of the other oximeters' calibrations and confirmation tests marketed in the USA, as laboratory researchers 19
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probably referred to white skins as standards and did not consider skin color as a measurement bias factor. Additionally, in the three types of oximeters tested in this study (Nonin, Novametrix, Nellcor) the data confirm important bias between skin pigmentation, with bias ranging from 4 to 8% for dark-skinned subjects. Likewise, the COVID-19 pandemic has helped focus attention on hypoxia, one of the severity symptoms. Sjoding et al. released a study in 2020 alerting to the increased risk incurred by Black people and people of color with dark skin, in connection with the biases generated by these devices. Of course, the overexposure of racialized groups to COVID is multi-causal. However, it is urgent we question the use of some medical devices that have been identified as biased and potentially dangerous for RMGs and wonder if these devices have not contributed to the worsening of, and potentially the death from the disease among these communities. The oximeters, which tend to mask hypoxia of black people while it is a factor in the aggravation of the disease, is a blatant example.
4. RACISM, DISCRIMINATION, AND STEREOTYPES IN MEDICAL PRACTICES AND PATIENT CARE: THE MEDITERRANEAN SYNDROM Ranging from false beliefs, conscious and unconscious bias, limited intercultural skills, and sensitivity to diversity, racism, discrimination and stereotypes in medical practices and patient care are serious problems. The case of pain interpretation is best illustrated through the Mediterranean Syndrome, a set of racial stereotypes used by health care staff in the French medical field who consider that people with North African heritage tend to exaggerate their symptoms and pain. Today, the use of Mediterranean syndrome is broadened to also encompass sub-Saharan African patients.7 This false “syndrome” is in theory not officially taught (explicitly) in the medical and paramedical courses, but is rather transmitted during on the ground internships and professional experiences. It is largely through practice in the professional environment that health workers acquire these social and racial representations. Social representation can be defined as "a form of knowledge, socially developed and shared, having a practical aim and contributing to the construction of a reality common to a social whole." (Jodelet, D. 1989). Thus, health professionals’ common values inherent to care, along with more or less grounded beliefs, as well as their own mental projections, impact their professional practices. The 7
Vega, A. (2012). “Soignants, SOIGNÉS: Pour une approche anthropologique Des soins infirmiers.” De Boeck.
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negligence of pain in the name of the racist cultural stereotypes called Mediterranean Syndrome is an outcome of these beliefs and projections. The genesis of this belief comes from the French colonial medicine period and extends to the North African and Sub-Saharan migration waves of the 1970s. French medicine and psychiatry were left lost in front of migrant patients complaining about pains they considered “unknown.”8 Health professionals started referring to this phenomenon as “coulchite” (pain everywhere) or “North-African Syndrome.”8 By negatively naming, stereotyping, dehumanizing, and discriminating against misunderstood pains, while wrongly using a medical lexical language (syndrome), they intended to transfer the incapacity and responsibility of the doctors from the health staffs to the patients themselves, reflecting the circumvention of “the incomprehension [or] even the discomfort of health professionals” (S, Savas. 2009). Although the use of the expression of Mediterranean Syndrome has become quite obsolete in the healthcare field, its theory and practical use - whether consciously or unconsciously - are still very much topical in professional health care circles until this day. Official figures on the number of healthcare workers familiar with the Mediterranean Syndrome are lacking. However, racist and discriminating practices linked to the use of these stereotypes keep circulating and remain anchored in the practices of the medical sector, in hospital environments or in private facilities. As part of a thesis carried out in 2020 in the emergency services of the Alsace region, out of the 69 doctors who were questioned about the Mediterranean syndrome 88% said they were familiar with this term and concept and 75% witnessed its practice by a peer. Findings of an independent NGO study that measures the extent of discrimination in the medical system also reveal that 28% of respondents received racist or sexists comments during medical care. Although results should be taken with precaution due to the sample not being representative enough of the French population, the study gives an insight to the existence of a set of behaviors, prejudices, and racial and racist stereotypes in the medical system. This set negatively influences, directly and indirectly, the care and the health of RMGs in France. This impact of the Mediterranean Syndrome is far from trivial and can lead to dramatic consequences as in the case of Naomi Musenga. In 2017 this young black woman from Strasbourg died from severe abdominal pain after calling the SAMU du Bas Rhin (equiv. calling 911) for an ambulance. The SAMU telephone operators did not pay attention to 8
F. Fanon. (2001). “Le « syndrome nord-africain. » “ Pour la révolution africaine, Écrits politiques, Paris, La Découverte.
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her distressed call, openly mocked her, and hung up on her. A few hours later, the young woman died without ever accessing help. This case stunned the French society. Many French organizations, doctors, and the media denounced the role of the Mediterranean syndrome in Naomi Musenga’s death. In the era of social and digital networks, concerned individuals have mobilized in recent years to tackle these injustices, lift the voice of RMGs’ individual and collective experiences, and fight against discrimination and cognitive biases. The scientific literature, for its part, has an excessive delay catching up in this field and still remains largely underdeveloped.
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PART III - ANTI-RACISM AND INTERSECTIONALITY APPROACH: A SERIES OF RECOMMENDATIONS FOR INCREASED EQUITY AND INCLUSIVENESS IN THE FRENCH HEALTH CARE SYSTEM Authors: Saara Bouhouche*, Yasmine El Addouli, Sherihane Bensemmane The fight against racism and discrimination undergone by racialized and minority groups in health is a long struggle that requires a strong commitment and investment from the State and all its institutions. Responding to racist and discriminatory practices, such as the use of the Mediterranean Syndrome, requires multiple and complementary strategies. We call for conducting a national scale study on institutional racism and intersectional discriminations in the health care system to: ● measure the extent of the phenomenon in France and in its overseas territories, ● alert government authorities and public opinion, ● usher the development of adequate public policies based on reliable and measured data. At the same time, we recommend a set of actions to structurally reduce, or even eliminate, both the causes and the effects of racism and discrimination: 1. Invest and strengthen the health and social institutions' human, financial and material resources. 2. Simplify the administrative health and social processes and the procedures for obtaining the health care coverage provided by the State. 3. Create a system of language interpretation systematically available during medical consultations upon request of the patients or health professionals. 4. Create and integrate mandatory modules in health care curricula on the deconstruction of racial and gender stereotypes of patient care, intercultural skills, and social determinants of health. 5. Develop and execute awareness and accountability campaigns for health care practitioners on racist and discriminatory practices, including those linked to the use of the Mediterranean Syndrome. 6. Strengthen law enforcement on discriminatory practices and legally condemn practices linked to the use of the Mediterranean syndrome. 7. Establish a hierarchical structure of moral accountability and legal responsibility on racism and discrimination within public and private health facilities, including
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hospitals and clinics. Raise public awareness and provide information to patients. 8. Design tools and indicators for monitoring and evaluating progress in increasing healthcare access and quality for RMGs in France. 9. Create an independent platform to control and fight against racism and discriminatory practices in the health care sector to map out discrimination cases at the national level, handle and investigate complaints of racism and discrimination, and publish regular reports on the state of health inequalities in France. 10. Develop and implement public policies to ensure active diversification and inclusion of RMGs in strategic and decision-making bodies of the Health and Social Administration. 11. Develop and implement public policies to facilitate and actively support (eg. logistically, financially, administratively...) the access to and pursuit of advanced medical studies and professional training for RMGs, especially women, AND facilitate their access to professional opportunities (eg. mentoring programs, leadership training, and networking opportunities...) 12. Improve and adjust the distribution of health care professionals and centers across the country, according to the territorial needs and specificities.
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GLOSSARY Equality: Principle providing that all people in a society are treated equally by the law and that the rights (civil rights, freedom of speech, equal access to social goods and services…) and opportunities are the same for all without distinction. Equity: Equity is based on the concept of distributive justice and fairness and acknowledges that different individuals or groups need different support to reach similar results. Equity acknowledges the obstacles faced by individuals and groups due to physical, social, economic, political, and/or historical disadvantages (race, gender, socioeconomic situation, religion, geographic location, disability, etc.) and provides them with the exact resources, means, and opportunities they need to succeed. Health Equity: “Absence of unfair and avoidable or remediable differences in health among population groups defined socially, economically, demographically or geographically”. (World Health Organisation). Social Determinants of Health: The social determinants of health (SDH) are the “non-medical factors that influence health outcomes. They are the conditions in which people are born, grow, work, live, and age, and the wider set of forces and systems shaping the conditions of daily life. These forces and systems include economic policies and systems, development agendas, social norms, social policies, and political systems.” (World Health Organisation) Intersectionality: Sociological concept and analytical framework used to explore the interdependence between different forms of oppression and discrimination one person can experience simultaneously in society, with regards to social categorizations (race, gender, class, disability, religion, etc.). The concept was coined in 1989 by Kimberle W. Crenshaw, a US civil rights activist, and legal scholar. Minority Groups: A minority group is a group of people who, because of physical, cultural, political, religious, or other characteristics and beliefs, do not have equal access to power, wealth, resources, and services compared to a dominant group. A minority group is a group of people “singled out from the others in the society in which they live for differential and unequal treatment, and who therefore regard themselves as objects of collective discrimination”9, based on characteristics such as race, ethnicity, gender, sex, religion, or other criteria. A minority group is not defined by its number in a society. Wirth Louis (1945), “The Problem of Minority Groups”, in Linton Ralph, The Science of Man in the World Crisis, p. 347. 9
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Racialized Groups: Although race as a biological and essential category does not exist, race as a socially constructed category does; and so racialized groups. Racialized groups are groups of individuals in a society that are affected by the process of racisation and face different forms of oppression, discrimination, and domination. Racialization: Political and social process of producing categories and ascribing to individuals and groups subjective natural or inherent characteristics and assigning them to a position and role in society. The French sociologist Sarah Mazouz describes the concept of racialization as “the notion used by the social science researchers to highlight the racial hierarchies production mechanisms” (loose translation)10. Racisation: (French word without direct translation in English) Notion developed by the French sociologist Colette Guillaumin describes the process of domination of a group over one or several others, based on racial characteristics to maintain a continued position of domination and social, political, and economic privilege. The concept of racisation provides a sociological framework to understand how society-enforced processes assign to one or more groups a social, political, and economic position of inferiority, marginalization, and social exclusion.
10
Sarah Mazouz, 2020, “Race”, Ed. Anamosa; p. 48
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Women of Color in Peace, Security and Conflict Transformation The Race Across the Pond Initiative: Women of Color in the Healthcare System Series https://www.cairn.info/revue-journal-du-droit-des-jeunes-2007-6-page-31.htm Murji, A., Bedaiwy, M., Singh, S. S., Bougie, O. (2020). “Influence of Ethnicity on Clinical Presentation and Quality of Life in Women With Uterine Fibroids: Results From a Prospective Observational Registry”. Journal of obstetrics and gynaecology Canada : JOGC, volume 42, n°6, pp. 726–733. https://www.jogc.com/article/S1701-2163(19)30960-0/fulltext Murthy VH, Krumholz HM, Gross CP. (2004). “Participation in Cancer Clinical Trials: Race-, Sex-, and Age-Based Disparities.” JAMA, vol. 291, n°22. https://jamanetwork.com/journals/jama/article-abstract/198896 Nations Unies (2020). “COVID-19 : l’ONU pointe la discrimination raciale due aux inégalités structurelles”. https://www.un.org/fr/coronavirus/articles/UN-highlights-racial-discrimination-due-to-structuralinequalities Naude, A-J (2000). Le saturnisme, une maladie sociale de l'immigration, Hommes et Migrations, 1225, pp. 13-22. NIH Revitalization Act (1993). Subtitle B: §131-133. OECD / European Observatory on Health Systems and Policies, State of Health in the EU Initiative (2019). “France: Country Health Profile 2019”. OECD. 2018. Diversity statistics in the OECD, Paris. http://www.oecd.org/officialdocuments/publicdisplaydocumentpdf/?cote=SDD/DOC(2018)9&d ocLanguage=En Philip E. Bickler, John R. Feiner, John W. Severinghaus. (2005). “Effects of Skin Pigmentation on Pulse Oximeter Accuracy at Low Saturation“. Anesthesiology, n°102, pp. 715–719. https://pubs.asahq.org/anesthesiology/article/102/4/715/7364/Effects-of-Skin-Pigmentation-o n-Pulse-Oximeter Potterat MM, Monnin Y, Pechère A, Guessous I. (2015). “Les femmes, oubliées de la recherche clinique”. Rev Med Suisse, vol. 11, pp. 1733-1736. https://www.revmed.ch/revue-medicale-suisse/2015/revue-medicale-suisse-487/les-femmes-o ubliees-de-la-recherche-clinique#tab=tab-read Ralston, A. C., Webb, R. K., & Runciman, W. B. (1991). “Potential errors in pulse oximetry. III: Effects of interferences, dyes, dyshemoglobins and other pigments”. Anaesthesia, vol. 46, n°4, pp. 291–295. https://pubmed.ncbi.nlm.nih.gov/2024749/ Rey G. (2021). Éditorial. Revue d'épidémiologie et de santé publique, vol. 69, n°2, pp. 63–64. https://www.sciencedirect.com/science/article/abs/pii/S0398762021000444?via%3Dihub 31
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WOMEN OF COLOR ADVANCING PEACE, SECURITY, AND CONFLICT TRANSFORMATION THE RACE ACROSS THE POND INITIATIVE
Women of Color in the Healthcare System Series
