Rose Olson

Lao-Tzu Allan-Blitz

Bram Wispelwey

Rebecca Luckett

Editor’s Note: The following article is by a team of physicians at Brigham and Women’s Hospital, Massachusetts General Hospital, and Harvard Medical School with a strong commitment to global health equity, reflecting on their working experiences. The case studies they share involve sexual assault and trauma, which may be distressing for some readers.

Lack of equitable access to medical diagnostic testing contributes to innumerable health disparities around the world. According to 

, nearly one in two people on the planet lack access to basic diagnostic services. Several factors drive that lack of access, including legislative policies, infrastructure limitations, financial constraints, disparities in digital literacy, and shortages of workforce, medications, and devices. We present and compare two stories to highlight how those barriers affect patients differently in different contexts and discuss emerging solutions that may help to bring essential medical tests within reach of everyone, everywhere.

The civil war was ongoing in Sierra Leone. Fatima’s rural village was raided at night. Only 15 years old, Fatima was taken by a group of soldiers she did not know and was raped multiple times. Due to the significant stigma and shame around sexual violence, her family never spoke of what had happened. She developed flashbacks and nightmares, as well as ongoing pelvic pain for the months that followed the assault. But she never received medical care or psychological support. She carried the burden of this experience silently into adulthood.

Years later, Fatima had moved to the capital, Freetown, where she started a small, but successful café by the water. She fell in love with another shop owner next door and soon they were married. Within months, they felt ready to start a family. At the age of 35, after two years of trying to conceive without success, Fatima sought care at her local clinic. During the visit, she shared that she had struggled with irregular menstrual cycles and chronic pelvic pain for years. When the nurse pressed her as to when these symptoms started, she hinted at “difficulties” she had faced during the war. The nurse documented a history of “multiple sexual partners” in her chart. She was told that she was likely never going to be able to conceive, and told her husband should consider remarrying so that he can have children. No further diagnostic tests were performed.

Julie was in her second year of college, studying accounting, and it was nearing the end of finals week. To celebrate, her male friend invited her to a campus party that weekend. She drank at the party, and once she was less aware of her surroundings, he locked her in a bedroom where he sexually assaulted her. When Julia woke up the next morning, she felt severe pain in her pelvis and realized she was bleeding. Wracked with guilt for going to the party and trusting him, she didn’t tell anyone and did not seek care. Eventually, she developed vaginal discharge and was worried she was pregnant. She reluctantly went to her school doctor, who noted her story was concerning for sexual assault. Julie disclosed her experience, after which she was offered prompt testing and treatment for sexually transmitted infections (STIs), emergency contraception, and counselling. She was referred to legal services and provided with accommodations to allow her to switch dorms, classes, and take time away from school so she could recover in a safe environment. Her doctor documented the trauma history and ensured ongoing follow-up visits to address both medical and psychological needs.

Years later, Julia had launched her own accounting firm, and when her work had settled down a little, her and her husband decided it was the right time to start a family. She soon met with a doctor who answered all her questions about getting pregnant and provided advice, such as taking prenatal vitamins. A year passed. Julia was concerned that she had not gotten pregnant, and she was promptly referred to a specialized fertility doctor. Her care team noted her sexual assault and STI history, and risk of tubal infertility. Julia underwent several rounds of testing including a pelvic ultrasound, followed by a surgical procedure to examine her ovaries. Aware of her trauma history, her medical team ensured she had appropriate pain relief, sedation and an extra support person during her pelvic exams and procedures. Her procedure confirmed that both of her fallopian tubes were scarred. Fortunately, due to early treatment and care, the damage was mild. Julia proceeded with in vitro fertilization and successfully conceived, eventually giving birth to a healthy baby girl. She and her husband are now planning for a second child, while their daughter Kylie, now three, is preparing for preschool.

REFLECTIONS ON DIAGNOSTIC CHALLENGES FROM THE CASES

Considerable diagnostic challenges were present in both cases. Yet the two cases resulted in very different outcomes. One way to consider those diagnostic challenges is to separate them into social barriers and resource availability, which are more linked than they might first appear.

Sexual violence is highly stigmatized and not always treated as a health issue. Yet sexual violence is associated with a range of well-documented short- and long-term health consequences, including STIs, unintended pregnancy, pelvic injuries that can lead to chronic pain and fistulas, and significant psychological trauma. Stigma exists for routine sexual health care as well. Adolescents in the U.S. are half as likely to test for STIs if they are concerned about stigma or discrimination. Such leads to continued disease transmission and complications, including infertility. Similarly, shame around other reproductive health conditions including miscarriage and stillbirth, can lead to both severe emotional and physical harms.

Stigma remains a substantial barrier to care across all continents for diseases of sexual and reproductive health, yet the two cases exemplify contrasting cascades. In cases like Fatima’s, stigma became a key barrier to appropriate testing and care after sexual assault, which was so significant she was never offered diagnostic testing for infections or pregnancy following her assault; even seeking care can lead to further re-traumatization through medical mistreatment.

The relationship between stigma and resource unavailability creates an important synergy that further fuels the STI epidemic. Should Fatima have managed to overcome stigma, she would have found herself in a clinic lacking the basic reproductive health tools she needed. That reality further discourages reporting and care seeking — why risk further stigma and ostracization when no hope exists for appropriate medical care, let alone legal support and accountability?

From her abuse, Fatima likely developed a severe consequence of untreated chlamydia or gonorrhea — pelvic inflammatory disease (PID). PID is a condition where infection causes inflammation and eventual scarring of the reproductive tract, permanently impairing fertility. As many as 12% of cases of chlamydia lead to PID, and as many as 10% of those cases result in infertility. Yet infertility from STIs is highly preventable with timely diagnosis and antibiotic therapy.

Conversely, while social stigma is as present in Julia’s case as in Fatima’s (with the added dynamic of assault by a friend), her ultimate diagnosis and treatment ended very differently due to the environment in which Julia’s case occurred. The availability of care on her Boston campus offered a reasonably low threshold, including personal privacy, for Julia to present and disclose what happened to her. Readily available medical resources and laboratory diagnostics as well as trauma-informed care can overcome the wall of stigma. Yet, such access is by no means guaranteed even in high income countries. Approximately 2.2 million women of childbearing age in the United States live in counties that lack maternity care resources, hospitals or birth centers offering obstetric care, or obstetric providers. Such areas are known as maternity care deserts.

In the later stages of both cases, stigma continues to pervade the experiences of the two women. Yet the opportunity to access appropriate medical diagnostics and care can be transformative: therapeutic success is shown to be possible.

At both clinical encounters, Julia had access to care facilities that could provide diagnostics and therapeutics unavailable to Fatima; such tests included urine, blood, and tissue testing, nucleic acid amplification testing for STIs, pregnancy testing and pelvic ultrasound, while therapeutic options included laparoscopy and in vitro fertilization. Prompt medical care, including STI diagnosis, and prompt infertility evaluation, are critical in ensuring improved reproductive health outcomes and quality of care. Access to diagnostic tools, surgical intervention, and assisted reproductive technologies ultimately enabled Julia to achieve pregnancy.

However, Fatima may be a better representation of the average experience of women around the world. Globally, more than 1,000,000 new curable STIs are acquired every day. The vast majority of those infections occur in settings without access to a diagnostic test. Reliable access to laboratory and imaging diagnostics, even in their most cost-effective forms, require a high-functioning and reasonably well-funded health system.

Fundamentally, healthcare shortcomings, medication shortages, and lack of diagnostic availability should not be viewed as local failures. Anthropologic and historic contexts, unique to each setting, interact with current political and social structures to drive those disparities. In Sierra Leone (where Fatima is from), for instance, we must recognize the harmful long-term effects of more than 150 years of British colonization predicated on economic extraction, labor exploitation, resource theft, and sociopolitical inequality. While ending in 1961, the colonial period was followed by a neocolonialism that has strapped the nation with debt, civil war, and extractive mineral removal. Such factors create additional obstacles to healthcare development and can perpetuate the lack of available diagnostic infrastructure. However, through understanding the context within which inequities persist, meaningful advances can be and have been made.

Technologic advances have low-cost testing increasingly possible in more settings than ever before. For STIs, point-of-care tests are beginning to obviate the need for standard laboratory-based methods that have limited use in low-resource settings for decades. Similarly, novel device-based blood tests are being developed that can increase the availability of many tests for women undergoing infertility evaluation, which were not available to Fatima. However, ensuring distribution of new tests at price-points affordable for low- and middle-income countries remains problematic.

Point-of-care ultrasound devices are increasingly produced that are low-cost and durable, permitting use in settings without other medical imaging modalities. Such has been recognized as an essential component of diagnostic equity by 

. However, point-of-care ultrasound implementation has been severely limited by a lack of trained providers.

However, as exemplified by the two cases, technologic advances alone will not be sufficient to establish diagnostic equity. Among many other factors, diagnostic equity requires systems that enable people to access and benefit from such tests. Some examples include community-engagement and education programs can begin to reduce stigma among patients, their families, and clinicians. Introducing trauma-informed care can also address stigma, foster trust between patients and the health system, and improve outcomes. Concurrent efforts to strengthen existing supply chains will be essential to assure availability of testing and treatment supplies. Beyond access, supply chain assurance also builds trust within patients, who may be more likely to seek care if they know they can obtain reliable treatment.

Structural and political forces are equally important in maintaining the ability of healthcare providers to both recognize and respond to a patient’s illnesses and suffering — also known as structural competency. Like all practical skills, structural competency requires training: a reordering of our thought patterns at the individual level and ultimately demanding alternative approaches and solutions at the interpersonal, institutional, community, research, and policy levels.

The two cases presented offer contrasting examples of how disparities in access to diagnostic tests impact the lives of patients. Lack of access to resources compounds social barriers to care, that drive inequities. While novel technologies are in development that offer the promise of improving access to diagnostic tests in low- and middle-income countries, concurrent efforts are needed to address individual-, community-, and structural-level barriers to diagnostic equity and improve care for survivors everywhere.

Rose Olson

Rose Olson

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