Let Them Become Superior: When Medicine Creates a Hierarchy

Introduction: Gene therapy and its Unequal Access

Gene therapy is arguably one of the fastest-growing and most revolutionary technologies in modern science. It is a medical treatment that utilizes cells or genes to correct genetic defects or treat diseases, aiming to improve or restore normal cellular function. Although gene therapy has only been developing since 1997, it shows promise in improving treatment for genetic diseases and opens doors to finding cures for illnesses like sickle cell anemia and many forms of cancer. Having little to no existing treatments for these diseases currently, this technology will have the capability to change the lives of millions. Gene therapy’s potential is ever-growing, with its diverse possibilities ensuring it a consequential role in future society. Despite the public certainty that gene therapy is a permanent fixture in the scientific world, a number of uncertainties arise: Who will benefit from this innovation? Who will be left out? How will such advancements be distributed in  heterogeneous societies, like the United States? This paper will investigate these questions by delving into gene therapy’s capabilities, the current state of the American health care system, and the potentials of its inaccessibility. Without equitable access for low-income populations, gene therapy risks reinforcing existing health disparities and reshaping biomedical progress into a driver of social stratification.

Currently, gene therapy technology is primarily utilized to produce new treatments for genetic diseases, with significant strides in research centering on a treatment for sickle cell anemia. The FDA has approved two gene therapies for sickle cell disease: Lyfgenia and Casgevy. Carrie MacMillan, a senior writer at the Yale School of Medicine, explains that both treatments are widely regarded as “groundbreaking,” because they signal the first gene therapies to potentially cure a hereditary condition. As research progresses with gene therapy, scientists will continue to take steps to create other technologies that will treat other forms of diseases and ultimately, care for thousands.

The American Society of Gene + Cell Therapy (ASGCT) clarifies the main issue for patients is the high upfront costs, as opposed to small installments common to treatments for chronic illnesses. For instance, gene therapy to treat Hemophilia A has an upfront cost of $2 million; while common treatments can range from $20-100 million dollars over the patient's life. While the gene therapy’s upfront cost is a fraction of typical lifetime treatments, most Americans don’t have immediate access to two million dollars. Additionally, as an experimental technology, gene therapy is vulnerable to exploitation by insurance companies. They may choose to increase premiums or exclude gene-therapy coverage altogether, preventing patients from accessing potential health and economic benefits from one-time treatment. Since insurance companies will likely fail to integrate new experimental technologies like gene therapy into coverage plans due to high upfront costs and slightly unpredictable outcomes, even those who are covered by Medicaid and other private insurers will not obtain financial support for treatments. Consequently, this would require an external organization to help manage payments to fulfill this plan; fortunately, the Cell and Gene Therapy Access Model (CGT) intends to address these needs.

Solutions Cut Short

The CGT is addressing financial concerns by creating “​​outcomes-based agreements (OBAs)” between U.S. states individually and manufactures to offer treatments within a structure that dictates payments to outcomes, ultimately lowering costs for participating states. This agreement will allow U.S. states to voluntarily participate in the program and use a portion of their Medicaid budget towards the costs. OBAs will ensure participating states pay for a successful service, by securing reimbursements from manufacturers should a treatment be less effective than expected. However, while this program is a possible solution to this financial burden, recent changes in legislation suggest considerable limitations.

Medicaid is currently responsible for the medical treatment of 89 million low-income Americans. This number equates to about one of every five Americans nationally. In a country without universal healthcare, Medicaid is a vital component in making healthcare accessible and has served as a partial remedy for the income-based healthcare gap. Within the U.S. population, Medicaid expansion is higher for Hispanic, Black, American Indian or Alaska Native individuals. With the CGT Access Model focusing on making gene therapies for sickle cell anemia, many Medicaid beneficiaries may be able to access this treatment. Since Medicaid is a combination of federal and state funding, the CGT uses the funds allocated to states to fund their Access Model. The implementation of the CGT Access Model was projected to begin in January of 2025 through 2026 for participating states; as a result, thousands of low income Americans would be eligible for assistance in obtaining their long-awaited treatment. This suggests that several participating states have not implemented the model and many of those in the process have not completed implementation. Unfortunately, the One Big Beautiful Bill Act recently passed may pose a major obstacle in model implementation.

The One Big Beautiful Bill Act (OBBBA, 119th Congress) 

The OBBBA will have a major impact on Medicaid programs, with over $1 trillion dollars being defunded from health programs, the OBBA accounts for the largest decrease in federal support for health care in American history. Additionally, the OBBBA is restricting State Directed Medicaid Funding by capping payments at “110 percent of the specified total published Medicare payment rate…or 100 percent of the specified total published Medicare payment rate” (OBBBA, Sect. 7116 of HR.1). In simpler terms, states have finite budgets for Medicaid, and the OBBBA is cutting this funding and placing limits on programs funded by states. Consequently, Medicaid programs can only use so much state funding, and, with budget cuts taking effect, states will likely have to reassess priorities. With this section of the OBBBA currently taking effect, high cost programs like the CGT Access Model are far less likely to receive adequate funding during its similar timeline for implementation.

Medicaid has partially addressed the income-based health care gap in the U.S. for some beneficiaries; however, there is still much to be desired. Income disparity, which is the uneven distribution of income among people or groups in a population, is a main driver of the health care gap. In comparison to other countries, the U.S. has a drastic income disparity. The detrimental effects of this income gap, specifically in relation to healthcare accessibility, will likely only worsen with OBBBA-imposed Medicaid cuts leaving more Americans uninsured. It is forecasted that Medicaid coverage losses will likely contribute to expanding racial disparities in health care, since a disproportionately large share of Hispanic, Black, AIAN and NHPI Americans rely on these programs for coverage. As healthcare access declines for low-income Americans, gene therapy risks becoming a mechanism of biological classification, transforming medical innovation into a reinforcement of social and health inequalities. 

Historical Precedents

Throughout the history of the United States, a recurring theme has been the othering of people different from the caucasian norm . For example, to justify slavery in America, supporters created a form of pseudo-scientific racism that Gershom Williams explains as a form of science, often referred to as ‘scientific racism,’ that “attempted to provide a convenient rationalization for the enslavement and colonial oppression of African and Native American people.” Williams dives into the ‘polygenist thesis’ that was preached by Georges Cuvier to categorize modern humanity in a hierarchy of subcategories based on race. The polygenic thesis was the explanation of why geographical and linguistic characteristics suggested that the African American race never transcended “barbarism”, based on judgements of cranial capacity. Moreover, many Caucasian scientists, including Louis Agassiz, asserted that African Americans constituted a different, inferior species altogether. Basing his claim on a falsified correlation between cranial capacity and intelligence, Agassiz went so far as to attribute Caucasian unhappiness to coexisting with African Americans. These authors illustrate the longstanding pattern that as Americans, we have a history of oppression against those we view as inferior; subsequently, we continue to endure the medical disparities previously mentioned. Unfortunately, history tends to repeat itself, and these scientific definitions of racism may have much larger repercussions in the future.

A Blueprint for Genetic Elitism

The improvement of gene therapy creates a new avenue of innovation, expanding the technology’s potential to engineer a superior race of humans. I do not condone the use of gene therapy for this purpose. The Center for Naval Analyses, a research-based nonprofit that informs the decisions of Navy, Marine Corps, and DOD leaders, introduces the term “human-centered bioengineering.” This term is used to address people who have received gene therapies and includes the often fiction-associated term “cyborg.” In this case, all types of human gene therapies, including one by the name of CRISPR1, are producers of ‘human-centered bioengineering.’ The CNA explains how this “genetic engineering,” particularly with the accessibility offered by CRISPR1 and related technologies, has a trajectory that promises smarter, stronger, and “better” humans from birth, heralding the advent of “homo superior.”  In turn, there is a possibility that those who receive the treatment are more likely to yield better life expectancy and overall health markers.

The CNA believes human-centered bioengineering will bring about major health advancements, leading to overall improvements of the human race. This belief is misleading. These enhancements would only be available to a select few due to income inequality and a disproportionate access to care. In turn, the degradation of health care accessibility in the U.S., in combination with the development of gene therapy, signifies that a treatment with monumental implications will not be accessible to low and average-income beneficiaries. Ironically, the best ‘available’ solution, the Cell and Gene Therapy Access Model, is focusing on treatments for  sickle cell anemia, an inherited blood disorder primarily affecting African Americans, the same group that accounts for a disproportionately large portion of the United States’ lower economic classes. This implication will not only limit the amount of people able to receive long-awaited treatment, but it will also shift the focus to improving human-centered bioengineering. Something that will likely only be available to the highest class, serving as an enhancement for those who are already dominant in society. Thus, gene therapy introduces a new variable in calculating income disparities – one that will surely expand them exponentially.

Should these health disparities continue to grow, we must not forget a dangerous and unfathomable legal precedent: Jim Crow laws. During this chapter of American History, African Americans were considered to be an inferior race, the “other” versus “us.” In regard to gene therapy, wealthy individuals will assume a similar position of superiority, while lower class Americans will become inferior. The key difference is that this time, the science will be real. If wealthy Americans are the only people who can access this technology, they will become the ‘homo superior,’ as introduced by the CNA. In this case, because of the inaccessibility of gene therapy, low-income Americans will not have access to this technology and will be left behind during this era of innovation and preventive care. These dynamics create a new version of racism. Part of the reason racism is easily disproven scientifically is that, above all moral dilemmas, any inferiorities that white scientists claimed affected African Americans were proven false. Empirical evidence demonstrates that increased cranial capacity does not increase intelligence. In our case, there is no false science to dismantle; the inequality will be real and those unable to afford it could be viewed as inferior with no recourse to challenge the legitimacy of that hierarchy. Unlike the past, this form of exclusion is not based on a scientific mistake; it is grounded on a tangible biological gap between the genetically enhanced and everyone else. 

Conclusion

This research brief has identified important implications and limitations of medical innovation. First, the U.S. patent system allows innovators to create and distribute inventions that have the potential to improve lives, but access to these innovations is not for everyone. Second, and perhaps most importantly, access to medical treatment and cutting-edge innovation is ultimately a question of care in relation to class. In the U.S., it is the wealthy – those of higher social class – who have access to this kind of innovation. Lastly, innovations such as gene therapy can be exploited, resulting in adverse impacts on society. This limitation stems from the fact that they fail to address one of humanity’s greatest needs: equitable access to health care. One might assume that innovation is inherently tied to improving the lives of others, yet in practice, these efforts often appear calculated and bureaucratic.

While there is no ‘quick fix’ to keep this from becoming a reality, the best precaution we can take is investing time, optimal policy-design, and consideration into accessibility as this technology develops. The Cell and Gene Therapy Access Model was a promising first attempt to remedy this issue, and this is not to say that a similar model will not be successful in the future; however, this is a testament to the effects of legislation that restricts health care access to the wealthy. The enacting of the OBBBA has halted the progress of making these treatments accessible and it is legislation of this manner that will promote societal divides. Thus, we must advocate for initiatives to create third party organizations, policies that do not restrict Medicaid funding, and invent entirely new programs to keep equity above enhancement. This way, gene therapy can remain the incredible technology it was created to be without being manipulated into creating a biological societal divide.

To conclude, gene therapy has amazing possibilities to heal, but we must bear in mind the policy challenges it faces and its availability for low-income Americans. This technology has the ability to play a major role in defining who we want to be as a society. If we allow these hierarchies to develop, they will grow at such a rate that it will be difficult to correct. The question is about more than money, medicine, or policy – it is  about the kind of future we want to live in. Our best defense is being mindful and proactive about gene therapy’s implications and adjusting as it grows.

“If it’s inaccessible to the poor, it’s neither radical nor revolutionary.” -Anonymous.

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Avellana, CC’29, is a Staff Writer majoring in Biomedical Engineering with a minor in Political Science. She is interested in the ethics and accessibility of gene therapy and its effects on society.