As a caregiver for someone living with sickle cell , I have witnessed firsthand the overwhelming challenges families face—navigating a healthcare system that often seems to offer little more than band-aid solutions, all while rarely addressing the cultural needs and holistic health options that could make a real difference. One of the most glaring omissions in the treatment of sickle cell is the exploration of non-invasive, culturally specific food practices as a way to manage this nutritional deficiency. Instead, the spotlight has been increasingly placed on eugenic-based genomic programs, which, while offering promising advancements in genetic medicine, seem to prioritize the long-term goals of Western medicine over holistic, sustainable care.
The healthcare system has largely ignored the potential of cultural and nutritional practices, which have been proven for generations to manage health in ways that respect a patient’s heritage. From the health benefits of Moringa to the role of nutrient-rich foods in strengthening the immune system, there are countless opportunities to manage sickle cell through nutrition, yet this crucial area remains underfunded and underexplored. Instead of looking inward to what we can learn from ancestral knowledge, healthcare funding has disproportionately funneled into invasive, experimental gene-editing techniques and genomic programs rooted in eugenics—tools that often prioritize population control and medical profit over true patient well-being and autonomy.
Central to the eugenic approach to managing sickle cell disease is the aim to "enhance" the genetic composition of humanity, a concept first popularized by figures such as Linus Pauling. Pauling's involvement in the eugenics movement led him to promote genetic counseling, suggesting that sickle cell carriers be marked with a tattoo on the forehead to indicate their carrier status. This was intended as a strategy to prevent carriers from marrying each other and passing on the condition. In today's world, this mindset has reemerged through genomic programs like CRISPR and other gene-editing technologies that aim to "eliminate" genetic diseases by altering the DNA of embryos or editing the genes of living individuals. Although the idea of eradicating a condition like sickle cell may seem appealing at first glance, it raises numerous ethical and cultural questions.
First and foremost, these genomic approaches—though technically promising—can be seen as a tool for empire-building in the guise of medical advancement. There’s a disturbing trend emerging, where marginalized communities, particularly so called Black and indigenous populations, are being used as a steady source of human resources for “clinical trials of experimental invasive technologies.” The focus on gene editing and genomic solutions has become more about feeding a long-term pipeline of patients into the medical-industrial complex rather than offering sustainable, non-invasive solutions to those already suffering.
The ultimate goal of these programs seems to be one of creating permanent outpatients—patients who require ongoing treatments and interventions that serve the interests of the pharmaceutical and biotechnology industries, rather than empowering communities to manage their own health through natural means. Every new gene-editing experiment brings the promise of “eliminating” sickle cell, but the cost of these treatments is exorbitant. The beneficiaries of these experiments often aren't the families and individuals who need them the most, but rather the companies and institutions that control these technologies.
Meanwhile, the potential for non-invasive care—such as the incorporation of culturally specific foods into a patient’s nutrition plan—remains largely sidelined. Foods like Moringa, Cassava and Yams which is known for their potent anti-inflammatory and immune-boosting properties, have long been used in parts of Africa to manage sickle cell disease and other conditions. Moringa, rich in iron, calcium, and other essential vitamins and minerals, could play a significant role in improving the health of individuals with sickle cell anemia, reducing pain crises and promoting better overall health. Yet, funding for research into these natural, culturally grounded solutions is minimal, leaving caregivers to fend for themselves in a system that often neglects these crucial alternatives.
Moreover, this lack of investment in food-based interventions—coupled with the overemphasis on genetic manipulation—can be seen as another form of colonialism, where the voices of indigenous communities and their longstanding knowledge are dismissed in favor of Western, profit-driven approaches to healthcare. By framing genetic disorders as conditions to be “eradicated” through technology, there is a clear disregard for the lived experiences and the cultural contexts in which these communities exist.
This approach also misses an important point: sickle cell is not just a genetic issue, it is a social and environmental one. The healthcare system’s focus on genomic solutions fails to address the root causes of health disparities that disproportionately affect so called Black and indigenous communities, including lack of access to quality healthcare, poor nutrition, and environmental stressors. By overlooking the role of cultural food practices and other holistic care strategies, the medical system continues to perpetuate a cycle of dependence and exploitation, rather than fostering true autonomy and empowerment.
We must ask ourselves: are we truly advancing healthcare for marginalized communities, or are we merely creating a new generation of patients who are more profitable to treat in the long run? If we continue to funnel resources into genomic projects that emphasize invasive, high-cost treatments while ignoring sustainable and culturally relevant solutions, we risk turning healthcare into an industry of perpetual profit—one where the needs of the people are secondary to the goals of corporate stakeholders.
As caregivers, we must push for a paradigm shift—one that acknowledges the value of cultural wisdom, empowers families to take control of their health, and prioritizes non-invasive, holistic solutions to sickle cell management. We need to demand that more resources be directed toward research into the power of food and natural remedies, in addition to supporting more inclusive and culturally sensitive healthcare models.
The management of sickle cell disease need not rely solely on gene-editing technologies, blood, and chemotherapy, which are burdened by colonial and eugenic histories. Instead, it can be discovered within vibrant cultures that have long utilized food as medicine, community-based healing practices, and approaches that respect the dignity and autonomy of those affected by this ongoing struggle. It is time for us to reclaim our health and reject a system that treats us as mere subjects for experimentation. The future of sickle cell care should acknowledge the past, celebrate cultural diversity, and embrace non-invasive solutions that benefits every sickle cell warrior and their family.
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