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The recent FDA approval of Casgevy®, a CRISPR-based gene-editing therapy for sickle cell anemia (SCA), is being hailed as a groundbreaking medical innovation. Yet, beneath the hype, several serious concerns arise—concerns that need to be addressed before we celebrate this as a cure. While this technology holds potential, it must not be allowed to overshadow the pressing needs of the sickle cell anemia (SCA) community, nor should it become a tool for further exploitation. Let’s not be misled by a corporate-driven narrative that attempts to paint this as an unequivocal solution when, for many, it could very well become a modern instrument of colonialism.
A Closer Look at Innovation and Risk
CRISPR technology is still in its infancy, and its long-term effects are unknown. We’ve seen examples like that of Terry Horgan, who tragically died during a CRISPR trial, highlighting the inherent risks of experimental therapies. The SCA community, already burdened with a lifelong challenge, should not be forced into becoming test subjects for an unproven treatment with unpredictable outcomes. Yet, in a world where the interests of corporations often take precedence, those most vulnerable—like those living with sickle cell anemia—are left to gamble with their lives for the sake of innovation that may not have their best interests at heart.
The real question is: why are these technologies being rolled out while the everyday struggles of SCA patients are still being ignored? If the focus was truly on improving lives, why are we not addressing the root causes of the disparities—land sovereignty, access to healthy food, and exploitation in clinical trials—before pushing experimental treatments that carry such immense costs and risks?
The Sociological Dynamics of Gene Therapy
It’s impossible to ignore the deeply exploitative nature of this situation. Gene-editing companies are investing hundreds of millions of dollars into developing therapies for SCA, but the majority of the sickle cell anemia community lives in poverty. These same companies, which are either publicly traded or privately funded, are profiting from the desperation of those suffering from this juxtaposition. The commercialization of CRISPR technologies—rather than addressing the immediate needs of the community—is a perfect example of how systemic inequalities persist.
These companies often view SCA patients as a means to an end, creating a profitable market for experimental treatments while ignoring the systemic barriers that keep these same patients from accessing basic healthcare, let alone cutting-edge genetic therapies. The unfortunate reality is that the voices of those most affected by sickle cell anemia are drowned out by shareholders and lab coat-clad executives who only see the dollar signs attached to their investments.
If even a small portion of the funds poured into CRISPR research and clinical trials were redirected into sustainable, community-based solutions, we could potentially make significant strides in improving the quality of life for families affected by sickle cell anemia. What if instead of putting all of our hope into gene-editing experiments, we invested in holistic therapies—food as medicine, plant-based nutrition, and community support systems—that could manage the condition without the risk of irreversible genetic alterations?
The Cost of Access: Who Really Benefits?
At the heart of this gene-editing revolution is the glaring issue of accessibility. Casgevy® comes with a staggering price tag of $2.2 million per patient. This price is laughable when you consider that the majority of individuals suffering from sickle cell anemia—who are disproportionately Black and live in economically disadvantaged areas—simply cannot afford such treatments. Even when alternative CRISPR approaches are being developed, such as the University of California’s non-viral method, it’s still uncertain whether these therapies will ever be affordable or accessible to those who need them most.
Until significant reforms are made in healthcare policy and insurance coverage, gene-editing therapies risk becoming the exclusive domain of the wealthy. Those at the bottom of the socio-economic ladder—most of whom belong to marginalized communities—will be left with no option but to watch as these "innovations" pass them by. It's clear: unless you have the financial resources, gene-editing therapies are little more than a pipe dream, not a cure.
The Legacy of Exploitation: Trust in Medical Research
Let’s not forget the long history of exploitation of Black bodies in the name of medical "advancement." From the Tuskegee Syphilis Study, the case of Henrietta Lacks, to the modern-day neglect of healthcare in Black communities, there is a deep and justified mistrust of medical research. In light of this history, it is insulting to suggest that the SCA community should simply embrace these new gene-editing therapies without critical scrutiny.
Many in the SCA community are understandably hesitant to enroll in clinical trials, and with good reason. The trauma of past medical exploitation cannot be undone by slick marketing campaigns or promises of a cure. Ethical research, while necessary, must not simply focus on how to improve the perception of their processes among the community; it must instead prioritize the real needs of the community, ensuring transparency, accountability, and genuine respect for patient autonomy. Unfortunately, the reality is that the pursuit of profit often trumps the pursuit of ethical research.
The Barriers to Clinical Trial Participation
Even if people wanted to participate in clinical trials for sickle cell anemia, they face a slew of practical barriers—travel costs, time off work, caregiving responsibilities, and more. These obstacles disproportionately affect low-income individuals, leaving many unable to participate in the very trials that might provide the breakthroughs we’re promised. Clinical trials, which are presented as the gateway to progress, often become another barrier to healthcare, especially when so many SCA patients are already stretched thin by the daily realities of living with the condition.
Until these structural issues are addressed—until clinical trials are designed with the realities of marginalized communities in mind—participation rates will remain low, and progress will remain slow. Meanwhile, the same companies touting gene-editing as a "solution" will continue to profit from a system that keeps the very people who need the cure the most at arm’s length.
The Role of Creation of Society in Advocacy & Education
Unlike those pushing these gene-editing therapies, Creation of Society is firmly focused on advocating for the needs of the sickle cell anemia community—not the needs of the biotech companies. Our advocacy efforts are centered around:
Fighting for Equitable Access: We are demanding policy reforms that make healthcare—including healthy whole foods—accessible to all, even during hospital stays where it is commonplace to receive food that highlights the limitations of the standard American diet.
Community Education & Trust-Building: We are providing culturally relevant information to ensure the SCA community is equipped to make informed decisions without falling prey to corporate interests.
Supporting Holistic Health Approaches: CRISPR should not be the only solution on the table. Holistic therapies—such as Moringa-based nutrition, herbal medicine, and other natural approaches—must be recognized and embraced as contemporary options for managing sickle cell anemia.
Moving Forward: A Call for Skepticism & Equity
CRISPR gene-editing technologies must be approached with caution. The risks involved—both in terms of patient safety and the potential for further exploitation—cannot be ignored. The sickle cell anemia community deserves better than to be viewed as a mere market for experimental therapies. We must not allow these innovations to proceed unchecked, nor should we allow them to mask the systemic issues that prevent equitable access to healthcare.
Creation of Society is committed to standing up for the community, advocating for ethical practices, and promoting holistic health solutions that prioritize the well-being of the sickle cell anemia community over corporate profits.
Get Involved
When it comes to Multinational corporate profits, it's important to recognize that corporations are not like us. They don’t share our emotional connection to America’s history or the struggles of involuntary migrants navigating the complexities of underclass status. For many, the dream of upward mobility is met with constant barriers, especially for indigenous people whose growth has been stunted by a global system designed to oppress. Take a look at the life and legacy of Patrice Lumumba for a stark example. If you're ready to stand with the sickle cell anemia community and demand a better future—one that prioritizes equity, safety, and real care—join us. Together, we can amplify the voices of those most affected and push for sustainable solutions that put people before profits.
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