As a physician and medical student, we have bore witness to much preventable suffering. A recent patient diagnosed with stage IV cervical cancer exemplified this. Widely considered a preventable cancer, this woman had an abnormal pap smear 10 years prior. She was subsequently incarcerated, where her cancer screening and follow up was long neglected, eventually becoming so ill she required transfer to a hospital.
The incarceration of women has risen astronomically, increasing by nearly 600% in the past few decades. As reproductive health faces a new wave of criminalization, we must include the criminal legal system in our analysis and discussion of women’s health disparities. Incarcerated individuals experience higher rates of chronic disease, infectious diseases, and mental health concerns. In particular, Black women are disproportionately criminalized and incarcerated, and likewise more affected by numerous diseases. Social determinants of health drive these disparities as poverty, racism, lack of economic opportunity, and governmental neglect intersect to drive legal involvement, preventable suffering, and premature death.
Cervical cancer remains one particularly troubling disparity, given readily available preventive measures.
Background
Cervical cancer is the fourth most common cancer in women globally. HPV, the primary cause of cervical cancer, can transform normal cells to malignant over time. Despite HPV vaccination available since 2006 — which reduces cancer incidence by up to 90% — there remain at least 11,500 new cases of cervical cancer and 4,000 deaths annually in the U.S. Screening for early changes remains critical and is recommended for everyone with a cervix between ages 21-65. Pap smears allow for close surveillance, early treatment, and improved patient outcomes.
Race, socioeconomic status, education level, and access to care are among the many factors that contribute to cervical cancer disparities. This is partially explained by differential vaccination rates, with rates decreasing as family income decreases, and those without insurance having lower vaccination rates. Ultimately, the cervical cancer death rate is 65% higher in Black and native American women.
With incarceration a well-known driver of social and economic marginalization, it merits special attention when explaining and addressing racialized health disparities in women. Incarcerated women have a disproportionate cervical cancer burden, with cervical cancer in situ being diagnosed almost twice as often as the general population. Lack of screening before, during, and after time in custody contributes to the fact that cervical cancer is the most common cancer seen in incarcerated women.
A History of Exploitation
The medical field of gynecology has a long history of exploitation and abuse. The “father of modern gynecology,” James Marion Sims, routinely conducted experimental procedures on enslaved Black women without anesthesia in the mid-1800s. He gained prestige and wealth by surgically repairing vesicovaginal fistulas, with a goal not of improved health but prolonging fertility in order to maximize the supply of slave labor.
Cervical cancer specifically has a dark history of medical exploitation. Henrietta Lacks’ immortalized cell line was derived from her cervical cancer tissue specimen in 1951 without her family’s consent or compensation. This and much more has contributed to profound medical mistrust, especially when it comes to carceral spaces. Recent history would show this skepticism and fear to be well founded. In California prisons, sterilizations without consent continued well into the 21st century with nearly 1,400 documented from 1997 through 2013. In Ocilla, Georgia, a 2020 investigation found many women in the Irwin County detention facility underwent excessive and unnecessary procedures without informed consent, including hysterectomies.
Barriers to Care
Carceral spaces reproduce many of the worst aspects of American medicine, including racism, dehumanization, and indifference. Ultimately, meaningful healthcare interactions become near impossible as autonomy, respect, information-sharing, and privacy are all undermined. Formerly incarcerated women have noted negative interactions with healthcare providers, logistical barriers to appointments, and cost concerns as reasons for subpar healthcare. Many patients feel their conditions are not taken seriously and that treatment is poor and delayed.
Due to a lack of mandated standards, there exists little to no transparency. At times, unlicensed physicians practice substandard care for years unimpeded. Both public and private medical contractors are constantly under cost pressures and at the mercy of guards to facilitate both onsite and offsite medical visits. Many incarcerated women have suffered a history of sexual, physical, and emotional abuse that may decrease their inclination to seek care in an environment that too often compounds trauma. In sum, the conditions are ripe for neglect and abuse of power.
Towards Health Equity
There is a common refrain that carceral facilities offer opportunities to address health disparities. This couldn’t be more misguided. The sad reality that incarceration occasionally allows people to access care they otherwise might not have is an indictment of our public health and social services infrastructure.
It must be understood that jails and prisons are barriers to, not facilitators of, health equity. For instance, the short time often spent in a local jail is destabilizing on many fronts, causing loss of jobs, housing, and parental rights. Any potential health screening benefit is clearly better done elsewhere. In prison, the long-term environment endured is so stressful and negligent that women in their 50s are seen to have geriatric conditions seen in people in their 70s in the community.
To further invest in carceral spaces for supposed health benefits ignores far superior interventions to address health disparities. It ignores one of the basic tenets of public health, which is to go “upstream” and focus on prevention. In developing a deeper analysis of carceral systems, we see that it undermines both preventative public health and public safety goals.
Globally recognized health equity expert Camara Jones, MD, MPH, PhD, states that, “Achieving health equity requires valuing all individuals and populations equally, recognizing and rectifying historical injustices, and providing resources according to need.” Most important to this vision of equity is a focus on prevention — both prevention of cervical cancer through increased vaccination and appropriate screening, and prevention of involvement in the criminal legal system in the first place.
The realization that there is significant overlap between the root causes of criminalization and health disparities provides us a clear roadmap of what, where, and who to invest in. In no just society would access to basic public health and healthcare measures be predicated on criminalization.
Targeted investments in the social determinants of health remains an urgent priority. Through expanded and new hyperlocal models of public health, communities can add good-paying jobs, more resources, and trustworthy accessible services. In carceral facilities themselves, mandated oversight and alignment with national standards for screening and follow-up should be required. Support for women returning home should be much more robust, as this transition period can be isolating and disorienting.
Addressing health disparities, including within cervical cancer, requires recognizing the intersections of health, race, and the criminal legal system. Through building a robust infrastructure of supports, negating the need for carceral spaces, we can begin to mitigate the impact of incarceration on women’s health disparities.
Julia Shuford is a medical student at Emory University School of Medicine in Atlanta, Georgia. Mark Spencer, MD, is an assistant professor of medicine at Emory University.
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