Illustrations by James O’Keefe CC BY-SA 2.0 https://creativecommons.org/licenses/by-sa/2.0/
The Risk of Refusal: When Denied Care Leads to Makeshift Medicine
For decades, systemic barriers in the American healthcare system have denied marginalized groups, particularly women and transgender individuals, access to essential, safe medical care. Firsthand accounts and research highlight how discrimination and lack of access have forced trans individuals and non-trans women to turn to “DIY” healthcare approaches—self-managing critical treatments without professional guidance. This has created a public health crisis where people, lacking access to safe medical interventions, resort to unregulated and hazardous practices to meet their healthcare needs. For transgender individuals unable to obtain gender-affirming treatments and women in restrictive abortion states, the dangers of self-administered care are substantial, ranging from physical harm to severe mental health consequences. This issue underscores a systemic failure in American healthcare to provide safe, regulated options, putting people at risk and emphasizing the urgent need for reform. This crisis highlights not only the healthcare system’s systemic failures but also the enduring intersection of prejudice, policy, and neglect that prioritizes political agendas over the well-being of vulnerable populations. This essay will provide examples of the ongoing struggles of both the trans community and women in general in obtaining healthcare, which forces them to resort to DIY practices; analyze the ideological underpinnings of the societal unwillingness to grant them adequate access to healthcare; and provide some examples of the initiatives that aim at reducing restrictions and risks imposed by the current system and sound an alarm that in the current political climate the need to act is more urgent than ever..
The roots of this healthcare crisis are deeply intertwined with political ideologies. Historically, access to medical care has been influenced by societal norms and policy decisions that prioritize ideological control over patient autonomy. For example, Dr. MacKinnon from the Transformative Studies Institute states that the exclusion of transgender individuals from healthcare can be traced back to the medical establishment’s historical pathologization of gender nonconformity, which classified transgender identities as mental illnesses rather than legitimate experiences deserving of care (MacKinnon 74). Similarly, women’s access to reproductive healthcare has been limited by laws and policies designed to control their bodies and choices. These systemic issues are exacerbated in today’s political climate, where conservative agendas increasingly target gender-affirming care and reproductive rights. By framing these issues as matters of morality rather than healthcare, policymakers create an environment where marginalized groups are denied essential services, forcing them to seek unsafe alternatives.
One historical example of DIY healthcare among marginalized groups can be traced back to the 1970s, when transgender individuals, particularly transgender women of color, had limited or no access to safe, affirming medical care. As noted by Jules Gill-Peterson in Doctor’s Who?, a group of trans women of color in the 1970s who were “poor, many unhoused, and most sex workers” had to take matters into their own hands to access necessary healthcare” (Gill-Peterson 3). Deprived of options in the United States, these women traveled to Mexico to purchase estrogen, as they could not access doctors or gender-affirming care. These women had no other choice but to buy and administer hormones in informal settings like “hotel rooms, shared apartments, and even bars,” as “self-appointed doctors” of their community (Gill-Peterson 3). This underground model emerged not as a preferred option, but as a necessary response to exclusion from the mainstream healthcare system. The structural barriers that existed then continue to inform the modern landscape of transgender healthcare access, with echoes of these grassroots practices persisting in the face of ongoing institutional neglect.
Today, transgender individuals continue to face significant barriers to healthcare and are often compelled to rely on DIY hormone therapy to affirm their gender identity. As Kelly et al. state, “When access to gender-affirming medical care is limited, many transgender individuals are resilient in finding ways to affirm their gender through informal healthcare means” (Kelly et al. 475). However, for many, this resilience comes out of necessity, not choice. For example, “In Washington, DC, 58% of MTF (male-to-female) and 60% of MTFs in Chicago reported obtaining hormones from a nonmedical source” (Rotondi 1830). These individuals are forced to resort to non-prescribed hormones because they have no access to regulated, doctor-supervised treatments. This DIY approach is not just a matter of preference but a desperate response to systemic healthcare neglect.
The physical risks associated with this self-managed approach are alarming. Transgender individuals who seek hormones from unregulated sources are often subjected to improper dosing, which can result in dangerous side effects. Rotondi notes that “nonprescribed hormone users may be at increased risk for health problems resulting from improper dosing and a lack of monitoring” (Rotondi 1830). Hormones that are self-administered without proper medical guidance can lead to severe consequences, such as blood clots, cardiovascular complications, and liver damage (Rotondi 1830). These individuals may also face the risk of “do-it-yourself” surgeries—such as breast or genital modifications—carried out without sterile conditions or professional supervision, which can result in infections, complications, or permanent harm. These physical risks are a direct consequence of the healthcare system’s failure to provide safe, regulated care for transgender individuals.
The mental health toll is also significant, as the lack of professional oversight and the fear of physical harm compound the stress of living in a healthcare system that neglects transgender individuals’ needs. The National Women’s Law Center (NWLC) reports that restrictions on gender-affirming care “have had immediate effects on mental health, with parents, providers, and crisis hotlines reporting sharp upticks in youth in crisis” (“Our Bodies”). The anxiety of relying on unregulated treatments, coupled with the isolation of navigating these complex medical needs without professional support, exacerbates the psychological distress of transgender individuals. The mental health toll is a direct consequence of the healthcare system’s failure to provide accessible and affirming care, leaving individuals with no choice but to take matters into their own hands.
Women, too, are often forced into self-managed healthcare practices due to the increasing difficulty of accessing reproductive services. Since the Supreme Court’s decision to overturn federal abortion protections, the percentage of women reporting self-managed abortions has risen from 2.4% to 3.3% (Ralph et al. 1). The Center for American Progress reports that “14 states have near-total abortion bans during any point in pregnancy, often with only the narrowest exceptions” (Damante and Jones), leaving women with few options but to seek unsafe, self-managed abortions. The regional disparities in abortion access are stark; in states like Texas and Alabama, where restrictions are among the most severe, entire counties lack clinics offering reproductive services. In the face of such restrictions, Kelly et al. note that “in states where abortion is outlawed, communities are left with no option but to care for one another,” as they share techniques for self-managing abortions within their networks (475). Like transgender individuals, women are pushed into these unsafe healthcare practices not because they want to, but because they have no other choice to address their healthcare needs.
The physical risks associated with self-managed abortions are considerable. Women who resort to unsafe methods—such as ingesting herbal remedies, using physical instruments, or attempting to induce abortion through other unregulated means—risk hemorrhaging, infection, injury, and even death. Verma and Grossman observe that “while many self-managed abortions are guided by community networks, the absence of professional oversight increases the likelihood of severe complications” (Verma and Grossman 71-72). Furthermore, access to abortion pills, while safer than some traditional methods, remains legally restricted in many states, forcing women to acquire these medications through informal channels, which may not guarantee authenticity or proper instructions. The physical dangers of self-managed abortion underscore the healthcare system’s failure to provide safe, accessible reproductive care for women, forcing them to navigate these risks on their own.
The healthcare system’s refusal to provide adequate care for transgender individuals and women is deeply rooted in ideological control. In many countries such as Norway and the United States, transgender individuals, for example, have historically been required to “pass” as the opposite gender to qualify for medical care, as Slagstad recalls: “one of the criteria for sex change, which was very strict, was that one had to be able to pass as the other sex… Talk about cultural production of masculinity and femininity and what is right and wrong and normal and abnormal” (Slagstad 466). This exclusionary standard drives many transgender individuals to seek unsafe, unregulated treatments because they do not fit within the rigid frameworks of what is considered “normal” by medical professionals.
Similarly, women’s reproductive healthcare has been severely limited by political ideologies that prioritize control over their autonomy. Montoya and Feinberg argue that laws like “embryo and fetal personhood laws have long been seen as an attempt by politicians to undermine [Roe v. Wade] by declaring that human life begins at fertilization” (Montoya and Feinberg 486). These laws are designed not to protect women’s health, but to restrict access to care, leaving women with no choice but to pursue unsafe self-managed abortions. In both cases, the healthcare system enforces exclusionary rules, forcing them to find alternative, unsafe ways to manage their healthcare needs.
The current political climate, particularly with the re-election of Donald Trump in 2024, signals a likely increase in restrictions for both transgender and women’s healthcare. Under the Project 2025 plan, Republicans have laid out specific goals that could further marginalize these groups. “Goal #1: Protecting Life, Conscience, and Bodily Integrity” argues that healthcare programs should be “rooted in biological realities, not ideology,” with a focus on “protecting the fundamental right to life” and rejecting abortion and euthanasia as forms of healthcare (Heritage Foundation, pg. 450). The plan emphasizes that “abortion and euthanasia are not healthcare”(Heritage Foundation 450), reinforcing a conservative agenda that frames reproductive healthcare as a matter of ideological control rather than patient care. This rhetoric undermines women’s access to safe abortion services and increases the pressure for self-managed abortions, placing women at greater physical and emotional risk.
Additionally, the Project 2025 plan calls for policies that restrict gender-affirming care, framing it as a threat to “biological sex” and “children’s minds and bodies” (Heritage Foundation 450). It asserts that “radical actors inside and outside government are promoting harmful identity politics” and seeks to “protect children from harmful gender ideologies” (Heritage Foundation 450). The plan proposes more stringent regulations on healthcare programs related to gender identity, further excluding transgender individuals from the care they need.
In light of the above political shifts, transgender individuals are likely to face even greater challenges in accessing regulated, affirming care, pushing them further into unsafe, DIY healthcare practices. The physical risks of self-managed hormone treatments and surgeries will intensify, as these individuals will have fewer safe, medically supervised options available. The selective and restrictive policies within the American healthcare system force transgender individuals and women into unsafe, makeshift medicine practices. These groups resort to unregulated healthcare solutions out of sheer necessity, as institutional care is either unavailable or inaccessible. As these individuals face both physical risks and psychological distress, it becomes evident that the healthcare system is failing its most vulnerable populations. In light of these alarming developments, a reform is urgently needed to prioritize patient autonomy, accessibility, and equity, ensuring that healthcare is safe, regulated, and available to all.
Struggles of the trans community and women in general have some common threads. In fact, trans feminism provides a valuable framework for understanding the interconnected struggles of transgender individuals and women in the fight for healthcare access. Scholars in trans feminism emphasize that both gender-affirming care and reproductive rights are part of a larger system of bodily autonomy. For instance, scholars at GLBTQ Legal Advocates & Defenders (GLAD), a non-profit organization that fights for LGBTQ and HIV rights, support that “Health care access struggles are interconnected… Whether it’s affirming gender identity, seeking abortion care, or pursuing assisted reproduction, GLAD stands as a steadfast ally in the fight for health care access and bodily autonomy” (GLAD). They argue that denying healthcare to these groups reflects societal efforts to control marginalized bodies. For example, Spade argues that “the denial of care to transgender individuals and women reflects a broader strategy to regulate marginalized bodies and enforce conformity to dominant gender norms” (Spade 58). Historical parallels illustrate this point: the Comstock laws of the late 19th century, for instance, not only banned contraceptives but also restricted medical literature, curbing women’s access to healthcare knowledge. Similarly, transgender individuals were subjected to invasive psychological evaluations before being granted access to care, perpetuating stigma and exclusion. This shared struggle highlights the need for solidarity between feminist and trans rights movements, as both groups face systemic barriers rooted in similar ideologies of exclusion and control.
In light of these systemic failures, the question remains: what can be done to ensure safer options for individuals forced into DIY healthcare practices? Community-based solutions, such as mutual aid networks, have emerged as a critical resource for marginalized groups. These networks provide education, resources, and support for individuals navigating self-managed healthcare. For example, grassroots organizations like Aid Access provide guidance on self-managed abortions using medically approved protocols, reducing some of the risks associated with unregulated practices. Similarly, trans-led organizations offer resources for obtaining and safely administering hormones, creating a lifeline for those excluded from traditional healthcare systems. While these solutions are not substitutes for systemic reform, they represent an important step toward mitigating the immediate risks faced by marginalized groups.
The crisis of healthcare access in America has pushed transgender individuals and women to dangerous alternatives, transforming basic medical care into a desperate gamble. While mutual aid networks offer crucial lifelines, they cannot replace the systemic change our society desperately needs. Medical institutions must revolutionize their approach, with healthcare providers becoming active advocates for inclusive care and medical schools preparing a new generation of practitioners equipped to serve all patients with dignity. The path forward requires coordinated action: policymakers must face sustained pressure from organized coalitions of feminist and trans rights movements, while healthcare advocacy groups must document the human toll of restrictive policies. Each of us has a role to play – from supporting local aid networks to demanding accountability from representatives. The stakes could not be higher: this is not merely about healthcare access, but about affirming the fundamental right of all individuals to live authentically and safely. We stand at a crossroads where silence equals complicity. The choice is clear: either we transform our healthcare system into one that serves all members of society, or we accept the continuing tragedy of preventable suffering. The time for action is now.
Author: Ana Obrdovic
As a biomedical engineering student, I’ve always been drawn to understanding how systems work—and more importantly, how they sometimes fail, especially when it comes to human health. That’s what led me to explore the critical issue of denied healthcare that pushes marginalized groups, specifically transgender individuals and women, toward “DIY” medicine. It’s a topic that, from an engineering perspective, highlights a profound system breakdown and, from a human perspective, reveals deeply troubling inequities.
My journey to this topic wasn’t purely academic; it grew from my awareness of real-world stories I kept encountering. News reports and personal accounts of people who, despite needing essential medical care, were forced to resort to unsafe, self-managed treatments made me question: how can a system that prides itself on advanced medical innovation simultaneously deny basic care to so many?
When I dove into the research, I was particularly struck by the historical patterns. Reading Jules Gill-Peterson’s Doctor’s Who? in my English 110 class revealed how, back in the 1970s, trans women of color—often marginalized by poverty, homelessness, and sex work—had to manage their own healthcare, even traveling to Mexico for hormones. This historical precedent showed me that these aren’t new problems, but deeply embedded failures that persist today. Similarly, seeing the increasing barriers women face in accessing reproductive healthcare, especially after recent legal changes that have led to more self-managed abortions, revealed alarming parallels between these two groups’ struggles.
What really solidified my commitment to this topic was understanding the immense physical and mental toll these makeshift practices take. In biomedical engineering, we’re trained to design fail-safes and redundancies precisely because human health depends on reliable, tested systems. When I read about individuals risking blood clots, cardiovascular complications, and life-threatening infections from unmonitored hormone use, or women facing hemorrhaging from unsafe abortion methods, I see catastrophic system failures that would never be acceptable in any engineered medical device.
This essay became my way of applying an engineer’s perspective to a social justice issue—examining how institutional barriers create dangerous workarounds that put lives at risk. By documenting these preventable harms, I hope to demonstrate that healthcare access isn’t just a policy debate, but a critical system design problem that demands immediate attention and comprehensive reform.
Instructor: Davy Knittle
In this course, students focused on composition and argumentation in academic writing by considering how individuals and groups form community and kinship relations. We explored relationships in biological families, among chosen kin, and between people and their environmental contexts. We read a range of texts including one novel, Octavia Butler’s Parable of the Sower as well as Hua Hsu’s memoir Stay True. We considered essays by ecologists, public health reporters, disability activists, and geographers alongside poetry and podcasts. We addressed topics including Indigenous land rights, public health, queer and trans justice, and birding and wildlife ecology.
The final major writing assignment for the course was a research essay that introduced students to the University of Delaware library and its online and physical resources. The assignment asked students to build upon the skills they learned through a library scavenger hunt and our session with Lauren Wallis, the ENGL110 librarian to find scholarly sources that allowed them to make an argument about an area of research interest that extended from of our course texts. Students began this assignment by conducting initial research and writing a proposal. They then workshopped their essay drafts in partners before submitting a revised research essay. Students revised the essay additionally in dialogue with instructor feedback for their final portfolio for the course.
Works Cited
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GLBTQ Legal Advocates & Defenders (GLAD). “Transgender, Reproductive, and Fertility Care: The Fight for Health Care Equality and Bodily Autonomy.” 2 July 2024, https://www.glad.org/fight-for-transgender-reproductive-fertility-health-care/. Accessed 12 Dec. 2024.
Heritage Foundation. “Mandate for Leadership: The Conservative Promise.” Apr. 2023, www.project2025.org/.
Jones, Kierra B., and Becca Damante. “A Year after the Supreme Court Overturned Roe v. Wade, Trends in State Abortion Laws Have Emerged.” Center for American Progress, 18 Dec. 2023, www.americanprogress.org/article/a-year-after-the-supreme-court-overturned-roe-v-wade-trends-in-state-abortion-laws-have-emerged/.
Kelly, Patrick J. A., Katie B. Biello, and Jaclyn M. W. Hughto. “Makeshift Medicine Is a Response to US Health System Failures.” Nature Human Behaviour, vol. 7, no. 4, 2023, pp. 475-477. https://doi.org/10.1038/s41562-023-01575-z.
MacKinnon, K. R. (2018). “Pathologising trans people: Exploring the roles of patients and medical personnel.” Theory in Action, vol. 11, no. 4, 2016, pp. 1–14. https://doi.org/10.3798/tia.1937-0237.1826
Montoya, Melissa N., and Eve C. Feinberg. “My Body, whose choice?” Fertility and Sterility, vol. 117, no. 3, 2022, pp. 485–86. https://doi.org/10.1016/j.fertnstert.2021.12.018.
National Women’s Law Center. “Our Bodies, Our Futures: Connecting Abortion Rights and Trans and Intersex Rights.” National Women’s Law Center, 9 Aug. 2022, https://nwlc.org/resource/our-bodies-our-futures-connecting-abortion-rights-and-trans-and-intersex-rights/.
Ralph, Lauren, Reni Schroeder, Sarah Kaller, Daniel Grossman, and Madeline A. Biggs. “Self-Managed Abortion Attempts Before vs After Changes in Federal Abortion Protections in the US.” JAMA Network Open, vol. 7, no. 7, 2024, https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2821654.
Rotondi, Nooshin Khobzi, Greta R. Bauer, Kyle Scanlon, Matthias Kaay, Robb Travers, and Anna Travers. “Nonprescribed Hormone Use and Self-Performed Surgeries: ‘Do-It-Yourself’ Transitions in Transgender Communities in Ontario, Canada.” American Journal of Public Health, vol. 103, no. 10, 2013, pp. 1830-36. https://ajph.aphapublications.org/doi/full/10.2105/AJPH.2013.301348.
Slagstad, Ketil. “Society as Cause and Cure: The Norms of Transgender Social Medicine.” Culture, Medicine and Psychiatry, vol. 45, no. 3, 2021, pp. 456–78. https://doi.org/10.1007/s11013-021-09727-4.
Spade, Dean. Normal Life: Administrative Violence, Critical Trans Politics, and the Limits of Law. Duke University Press, 2015.
Verma, Nisha, and Daniel Grossman. “Self-Managed Abortion in the United States.” Current Obstetrics and Gynecology Reports, vol. 12, no. 2, 2023, pp. 70-75. PubMed, https://pubmed.ncbi.nlm.nih.gov/37305376/.