SANGHAMITRA DAS
SENSING CLIMATE CHANGE IN THE BLOOD: SICKLE CELL DISEASE, ENVIRONMENT AND HEALTH AMONG INDIGENOUS ADIVASI COMMUNITIES IN INDIA
“But what about climate change, sister?” This question was posed to me by Ammu,* an Indigenous Adivasi man with whose assistance I conducted anthropological research in parts of the Nilgiris district of Tamil Nadu, a southern regional state of India. We were discussing an article that we are co-authoring on lived experiences of sickle cell disease—a rare genetic blood disorder—among the Adivasi communities of the region. The said article will summarize the problems faced by the local Adivasi communities due to sickle cell disease—a disorder globally racialized as a “Black disease”[1] and in India, biomedically and bureaucratically characterized as primarily a “tribal disease.”[2] This “tribal” ascription exists even as this blood disorder is found among several other communities across India.
Ammu’s insistence on the implications of climate change for individuals and communities affected by sickle cell, though this was never a central focus of my research study, drove home the salience of the environment for health, particularly among oppressed and Indigenous communities in India and beyond. Sickle cell disease is a blood disorder that is directly affected by climatic changes. It is caused by a single gene mutation resulting in short-lived, sickle-shaped red blood cells and leads to symptoms that include chronic anemia, fatigue, shortness of breath, chest pain, and in extreme cases, organ damage and death.
Perhaps the most characteristic symptom of this genetic blood disorder is “pain crisis.” These are debilitating and recurrent episodes of pain caused by agglutination—basically, clumping or sticking together—of blood cells in the blood vessels. Agglutination can be exacerbated by changes in weather conditions like seasonal transitions, excessive heat or cold, and fluctuating humidity levels. Ammu and another interlocutor living with sickle cell noted (echoing recent research findings[3]) that drastic changes in climatic conditions and weather patterns are having a differential impact on the health of individuals with sickle cell disease. However, the most pronounced impacts of climate change will be on those individuals with sickle cell who belong to historically and socioeconomically disadvantaged communities, such as those belonging to Adivasi communities.
What is true for Adivasi members with sickle cell disease is also true for the larger Adivasi community: climate chaos is affecting their health in profound and deleterious ways. For instance, consider how drastic climatic changes affect those with the disorder. During seasonal transitions, particularly during the onset of the monsoon season in India, hospitals see a dramatic spike in admissions related to “pain crisis.” My Adivasi sickle cell interlocutors emphasize the importance of self-care in managing this period of transition: making sure to always carry an umbrella so as not get wet in the rain, keeping oneself warm when the weather gets clammy, refraining from performing outdoor activities to the best extent possible. However, when weather vagaries increase in frequency and climatic unpredictability escalates, maintaining these self-care practices will be difficult. This will exacerbate the atmosphere of disability, or constrained ability, that individuals with sickle cell chronically face.
This atmosphere of disability, or constrained ability, is likely to gradually encompass larger Adivasi communities, whose health outcomes are marked by structural marginalization. In India and throughout South Asia, the health status of Indigenous communities is starkly depressed when compared to privileged caste and mainstream communities.[4] Indigenous health in the region demonstrates alarming levels of malnutrition, infant and maternal mortality, and overall decrease in life expectancy.
Moreover, the depressed status of Adivasi health in India is rooted in the broader structural violence and exclusion of caste-based hierarchy in mainstream Indian societies, often manifesting as neglect and discrimination of Adivasi and historically oppressed caste communities within medical institutions.[5] Yet, when Ammu and other sickle cell community members call attention to the impact of climate change for health, they are also cautioning about the indisputable reality that climate change will alter our collective human condition as we know it. If climate change will exacerbate the suffering of Adivasi individuals with sickle cell, it will also affect the lives of members of privileged and mainstream communities. Excessive heat and extreme cold are fast becoming global public health concerns, and even those with substantial social and financial resources will find these forces increasingly difficult to escape.
So, how do we make sense of our collective health futures on a rapidly changing planet? To answer this question, we must first pay attention to the global political economy of health that determines both the infrastructures of our health systems and our subjective experiences of health. Transnational pharmaceutical corporations occupy a central place in this global political economy, armed with the medico-commercial instrument of clinical trials. In a perennial quest to open and more deeply exploit new markets for their drugs, pharmaceutical corporations continue to conduct larger and more expansive clinical trials that draw on the experimental terrains of the Global South.[6] It is therefore not surprising that in India, the pharmaceutical hub of the Global South, this clinical trial terrain now includes participants from Adivasi communities.[7]
In the therapeutically saturated societies of the Global North, which boast an allopathic medical solution for every affliction, a significant component of the clinical trial regime is to manufacture “me too” drugs—that is, drugs that function in ways that are largely similar to existing drugs, but claim minor increases in efficacy.[8] A case in point is the current state of the drug market for type 2 diabetes in the United States. Today, there is a competitive market for “me-too” drugs for this lifestyle disease that focus on lowering Hemoglobin A1c (HbA1c) levels—a complex of blood glucose and the hemoglobin in red blood cells. HbA1c depicts the average level of blood sugar over the preceding 2-3 months and is a treatment regime strategically developed by extensive corporate investments in diabetes research.[9] As a result, the American drug consumer realm is flooded with relentless advertising about lowering individual HbA1c levels, leading to an impending crisis of hypoglycemia-related medical emergencies deaths in the country. This is even as the environmental causes of type 2 diabetes like access to healthy and affordable food, particularly for Black, Indigenous, and People of Color (BIPOC) communities, remains grossly unaddressed.
Moreover, it is becoming increasingly apparent that the global clinical trial regime has a sizable carbon footprint,[10] invoking scientific experts to design strategies to reduce this footprint. These strategies would include devising tools to reliably assess the carbon footprint of clinical trials and determine whether the necessity of the trial justifies the knowledge produced and the carbon emitted in the process.[11] While such strategies are commendable and constitute a pragmatic start for mitigating the climate impact of clinical trials, the proliferation of “me-too” drugs also represents a problem of the framing of experiments in addition to a problem of (carbon) optimizing experiments.
This therefore necessitates a critical consideration of the cultural and sociopolitical dimensions of health experiences in designing solutions to promote bodily well-being, going beyond concerns of the sustainability of pharmaceutical regimes. For instance, such sustainability assessments will likely set new benchmarks for the percentage increase in efficacy of novel drugs over existing treatments. Despite this, persistent structural problems—as in the case of type 2 diabetes in the United States, the difficulty of accessing nutritious food by BIPOC communities due to economic disparity—will offset any justification of increased efficacy, leaving us with environmentally approved clinical trials albeit within a trenchant system of health inequity.
Likewise, in my study of sickle cell disease among Adivasi communities, I found that communities situate their sickle cell experiences within their larger condition rooted in displacement and dispossession from ancestral lands, economic uncertainty, and food insecurity. Without stable, life-enabling institutional structures in place, these dire material conditions render marginalized communities more vulnerable to the impacts of climate chaos. While the globally outsourced clinical trial regime is attempting to operate more sustainability—and rightfully so—the industry cannot account for how medical precarity intersects with sociopolitical, economic, and climatic precarity. Pharmaceutical solutions for biological afflictions thus become deficient, and even misplaced at times, in addressing the complexity of the human condition.
Here, it must also be noted that the transnational clinical trial regime is, first and foremost, an enterprise built in service of the health needs of the Global North and the privileged. In a global political economy of health that is governed by neoliberal principles of profit-maximization, as in the case of “me-too” drugs, this enterprise ultimately relies on recruiting clinical test subjects primarily from lower class and historically oppressed communities. Now increasingly located in the Global South, these clinical test subjects are also the first to be impacted by climate vagaries. Furthermore, several new drugs that are launched by pharmaceutical companies are initially cost-prohibitive and therefore, inaccessible to those communities whose bodily participation is key to the production of safe and efficacious pharmaceutical commodities. A pharma-centric vision of health is thus inevitably imbricated with the ways in which socioeconomic precarity translates into health inequity.
In contrast, from the Indigenous perspective, promoting Indigenous health would simultaneously mean restoring and healing the broader political ecologies that constitute the material, social and political realities of Indigenous communities. It would require a revision of the very idea of extractive development that has led to the present planetary carbon catastrophe in the first place. This will necessitate thinking about healing in more holistic terms, beyond the poverty of the moral economy of the pharmaceutical industry so dependent on innovating “me-too,” including for sickle cell disease.
Adivasi communities in postcolonial India today inhabit those margins of the Indian polity that have been restructured for developmental growth, propelled by neoliberal economic institutions in the west. This restructuring has led to extensive deforestation, extractive mining, and land acquisition for large techno-political projects like big river dams for hydroelectricity and nuclear power plants. Such processes have exacerbated the resource-poverty of both Indigenous and oppressed-caste communities alike. However, despite the ensuing displacement and disempowerment, these communities have endured staking their democratic presence in the polity. One such example of staking democratic presence are the ongoing protests by Adivasi communities against corporate acquisition of forest lands for coal mining in central India.[12] It is against this backdrop of resource extraction and environmental degradation that possibilities of community health and well-being must be analyzed.
What is more, the health impoverishment that Adivasi communities face today is also an ominous health future that looms large for mainstream societies, brought on by extractive economies. To envision and enact an alternative social world, it is therefore imperative that Adivasi voices like Ammu’s, concerned about the impacts of climate change on people with sickle cell, be included in deliberations on health and public policies. In my interactions with Adivasi members living with sickle cell, expressions of enabling health are articulated in ways that go beyond pharmaceutical commodities. Managing sickle cell health thus includes both questions of access to medicine and the incorporation of Indigenous knowledge.
For instance, in those parts of rural India where there are significant gaps in the reach of the public health system, communities manage their sickle cell condition by including moringa leaves in their diet, a plant locally known to aid the body in increasing the production of blood. Furthermore, based on cross-cultural Indigenous knowledge of the health and nutritional properties of moringa in Asia and Africa, this plant is now being explored as a solution for malnutrition in resource-constrained regions facing the brunt of climate related food insecurity.[13] In bridging the gap between marginalized communities and public health systems, attention to community reliance on environmental resources and their Indigenous knowledge therefore must find due consideration in the formulation of health policies.
Building this more just and humane health future for all requires that interventions for health be accompanied by broader structural changes. Protecting natural ecologies on which communities depend against corporate interests, federal investments in strengthening existing public and public health infrastructures rather than public-private-partnerships for economically stratified consumption, investing in Adivasi empowerment through education—such measures, among others, are crucial points for policy interventions in India. In this manner, focusing on the political economy of Adivasi health allows a diagnosis of the current and future health of the Indian society and democracy as well as our planetary situation.
I conclude this essay with an invitation to engage with the following questions: Who would be more susceptible to climate vagaries if gaps continue to exist in our medical systems? What do these gaps illuminate about our local and global institutions and economies? The answer to the first question, as this essay demonstrates, is evident. Indigenous and historically oppressed communities are likely to be the first casualties of the health impact of climate chaos. However, the scope of this chaos will inevitably be systemic. If Adivasis and oppressed-caste community members become the first victims of searing heat waves in rural India, the same bubble of unprecedented heat and humidity can lead to devastating tornados in Chicago.
These interlinkages hence lead us to the second question: what might we make of this information? Our experience with the COVID-19 pandemic has shown us that, at present, our health systems are ill-equipped to handle sudden and scaled-up demands on public health services that may emerge because of climate chaos. Simultaneously, the priorities of global public health are too closely tied to biopharmaceutical corporations through clinical trials and the privatized model of healthcare, following from our larger neoliberal political economies. Re-envisioning and restructuring the global health system would therefore mean centering on the health issues facing some of the most marginalized communities in the world, like the Adivasi communities of India.
Such a restructuring would highlight the ways in which health precarity is deeply intertwined with economic injustice, social oppression, and environmental degradation; these are structures that are in turn reinforced by extractive capitalism. A concerted global effort to strengthen local public health systems—the first and last lines of healthcare services available to the most vulnerable—will create an ecosystem of care that decenters profit to prioritize human life. At the same time, addressing the impact of extreme heat on individuals with sickle cell will likely create capabilities that can be scaled up to serve entire citizenries. This restructuring will further bring into focus the urgency of the climate conundrum. Thus, it will now be critical to pay attention to how some people and communities can already sense climate change in their blood and bodies.
Sanghamitra is a Postdoctoral Fellow in the department of Anthropology and the Committee on Southern Asian Studies at the University of Chicago. Her doctoral dissertation investigated the politics of sickle cell management in India, a genetic blood disorder that is biomedically characterized as primarily affecting Dalit-Bahujan and Indigenous/Adivasi communities in India. Sanghamitra’s broader work investigates how notions of social difference—emanating from Race, Caste, and Indigenous positionalities—are essentialized through biogenetic discourses that then structure global and local political economies of health.
*Names of people have been changed to maintain anonymity.
[1] See, Duana Fullwiley, The enculturated gene: sickle cell health politics and biological difference in West Africa (Princeton University Press, 2011).
[2] See, Roshan B. Colah, Malay B. Mukherjee, Snehal Martin, and Kanjaksha Ghosh. “Sickle cell disease in tribal populations in India.” Indian Journal of Medical Research 141, no. 5 (2015): 509-515.
[3] See, Emmanuel Ifeanyi Obeagu and Getrude Uzoma Obeagu. “Implications of climatic change on sickle cell anemia: A review.” Medicine 103, no. 6 (2024): e37127.
[4] Chundankuzhiyil Ulahannan Thresia, Prashanth Nuggehalli Srinivas, Katia Sarla Mohindra, and Chettiparambil Kumaran Jagadeesan. 2022. “The Health of Indigenous Populations in South Asia: A Critical Review in a Critical Time.” International Journal of Health Services 52 (1): 61–72.
[5] See, R. Srivatsan. “Reflections on discrimination and health in India.” Indian J Med Ethics 12, no. 1 (2015): 13-7. Also see, Sobin George. “Health for not all: mapping the discriminated and detached terrains of health services in rural India.” J Health Syst 1 (2015): 20-26.
[6] For a medical anthropological account of this, see, Adriana Petryna. When experiments travel: clinical trials and the global search for human subjects. Princeton University Press, 2009.
[7] See the case of the Human Papilloma Virus in, Kaushik Sunder Rajan. Pharmocracy: Value, politics, and knowledge in global biomedicine. Duke University Press, 2017.
[8] See, Joseph Dumit. Drugs for life: how pharmaceutical companies define our health. Duke University Press, 2012.
[9] For a media account of the diabetes crisis related to me-too drugs in the United States, see: https://www.reuters.com/investigates/special-report/usa-diabetes-overtreatment/ <Accessed July 2024>
[10] See, Jean-Marc Hoffmann, Annina Bauer, and Regina Grossmann. “The carbon footprint of clinical trials: a global survey on the status quo and current regulatory guidance.” BMJ Global Health 8, no. 9 (2023): e012754.
[11] Fiona Adshead, Rustam Al-Shahi Salman, Simon Aumonier, Michael Collins, Kerry Hood, Carolyn McNamara, Keith Moore, Richard Smith, Matthew R. Sydes, and Paula R. Williamson. “A strategy to reduce the carbon footprint of clinical trials.” The Lancet 398, no. 10297 (2021): 281-282.
[12] These protests are popularly known as the Hasdeo Aranya protests in the central Indian state of Chhattisgarh. For a detailed account, see: https://behanbox.com/2024/01/09/why-adivasis-of-hasdeo-aranya-are-back-on-the-streets-again/ <Accessed January 2024>
[13] See, Horn et. al., “Moringa oleifera as a sustainable climate-smart solution to nutrition, disease prevention, and water treatment challenges: A review,” Journal of Agriculture and Food Research, 10, 2022.