In the space between a diagnosis and a cure, millions of women in East Africa are lost — not to medicine's ignorance, but to its uneven reach. Researcher Tove Ekdahl Hjelm, defending her doctoral thesis at Karolinska Institutet on June 5, has mapped the distance between what is known and what is done: in Uganda and Ethiopia, most women with breast cancer are diagnosed only after the disease has spread, and most will die from it. Her findings — including a striking rate of hereditary genetic mutations among patients — suggest that the crisis is not inevitable, but that closing the gap will requ
Study reveals late diagnoses, treatment gaps in East African breast cancer care
Most breast cancer patients in Uganda and Ethiopia die from their disease due to late diagnosis and lack of access to life-saving treatment including surgery, chemotherapy, radiotherapy, and medications.
Most patients die from their disease. This sharply contrasts with Sweden.
Mark
Why does breast cancer in East Africa present so differently than in Sweden? Is it just about screening, or is something else at play?
Mimi
It's both. Yes, screening catches Swedish cases early. But Hjelm's work suggests the disease itself may behave differently in these populations. The fact that over 20 percent carry high-risk genetic mutations—that's much higher than typical—hints that the underlying biology might be distinct. And of course, once diagnosed, the infrastructure simply isn't there.
Mark
When you say only one in five patients completed their full treatment, what does that actually mean for survival?
Mimi
It means most of them die. That's the hard truth. In Sweden, early detection plus complete treatment means cure is possible. In Uganda and Ethiopia, late diagnosis plus fragmented care means the disease progresses unchecked. It's not a matter of slightly worse outcomes—it's a matter of life and death.
Mark
The genetic finding is interesting. Does that change how you'd approach prevention there?
Mimi
Completely. If heredity is driving a significant portion of cases, then genetic testing becomes not a luxury but a tool for survival. You identify carriers, you watch them closely, you catch tumors when they're small. But that requires infrastructure—counseling, testing capacity, follow-up systems—that doesn't exist yet.
Mark
What's the barrier to building that infrastructure? Money, training, both?
Mimi
Both, but also design. You can't just transplant a Swedish screening program to Uganda. The technology needs to work with limited resources. The training needs to fit local contexts. Hjelm's vision is about creating solutions that are actually usable in those settings, not just theoretically sound.
Mark
Do you think this research will actually change practice on the ground?
Mimi
That's the question, isn't it. The data is clear. The need is urgent. Whether it translates into policy and resources—that depends on whether researchers like Hjelm can build those collaborations and convince institutions that this matters.
Der Puls
- In Uganda and Ethiopia, breast cancer is largely a death sentence — not because it must be, but because tumors go undetected until they have already spread beyond reach.
- With no national screening programs across Sub-Saharan Africa, women only seek care when symptoms force them, arriving at clinics with advanced disease that even well-resourced systems would struggle to treat.
- Even diagnosis is not enough: only one in five patients who could theoretically still be cured manages to complete the full recommended course of surgery, chemotherapy, radiotherapy, and hormonal therapy.
- A startling finding cuts through the data — more than 20% of patients carry high-risk mutations in BRCA1, BRCA2, or PALB2, revealing a hereditary dimension to the crisis that genetic counseling and targeted surveillance could begin to address.
- Hjelm's research points toward a path forward: early detection infrastructure, accessible genetic testing, and diagnostic technologies built for resource-limited settings — interventions that could shift diagnosis from a death notice to a fighting chance.
In the space between a diagnosis and a cure, millions of women in East Africa are lost — not to medicine's ignorance, but to its uneven reach. Researcher Tove Ekdahl Hjelm, defending her doctoral thesis at Karolinska Institutet on June 5, has mapped the distance between what is known and what is done: in Uganda and Ethiopia, most women with breast cancer are diagnosed only after the disease has spread, and most will die from it. Her findings — including a striking rate of hereditary genetic mutations among patients — suggest that the crisis is not inevitable, but that closing the gap will require rebuilding care from detection to treatment, and from policy to the bedside.
Tove Ekdahl Hjelm has spent years documenting a disparity that costs lives by the thousands. In Uganda and Ethiopia, most women diagnosed with breast cancer are already too late — the disease has spread to lymph nodes or beyond. In Sweden, where Hjelm is a doctoral student at Karolinska Institutet, most patients are caught early enough to be cured. On June 5, she will defend a thesis that maps both the scale of this crisis and where intervention could change its course.
The research focuses on young women, many under 40 at diagnosis. Sub-Saharan Africa has no national screening programs, so tumors grow undetected until symptoms force patients to seek care. But detection is only the first barrier. Even women who receive a diagnosis face severe shortages of surgery, chemotherapy, radiotherapy, and cancer medications. The outcome is blunt: most patients die from their disease. In Uganda, only a small fraction of women estimated to develop breast cancer actually underwent surgery. In Ethiopia, patients arrived at diagnosis with more advanced disease than their Swedish counterparts. Across both countries, only one in five patients with theoretically curable disease managed to complete the full recommended treatment.
One finding stood apart from the rest. More than 20 percent of patients studied carried pathogenic mutations in BRCA1, BRCA2, or PALB2 — genes associated with very high breast cancer risk. This prevalence suggests heredity may play a larger role in these populations than previously understood, and it opens a door: genetic testing and targeted surveillance could identify at-risk women before disease takes hold.
Hjelm's vision extends beyond the thesis. She hopes to build lasting research collaborations between Swedish institutions and colleagues in low-income countries, and to develop diagnostic and treatment-prediction technologies designed for resource-limited settings. The goal is not to transplant Western medicine, but to build solutions that fit the reality on the ground — where the need is immense and the margin for delay is none.
Tove Ekdahl Hjelm has spent years studying a brutal disparity in cancer care. In Uganda and Ethiopia, most women diagnosed with breast cancer are already too late—the disease has spread to lymph nodes or beyond. Meanwhile, in Sweden, where Hjelm is a doctoral student at Karolinska Institutet, most breast cancer patients are caught early enough to be cured. On June 5, she will defend her thesis on early-onset breast cancer in East Africa, a body of work that documents not just the scale of the problem, but also where intervention could save lives.
The research centers on young women, many under 40 when diagnosed. Sub-Saharan Africa has no national breast cancer screening programs, which means tumors grow undetected until symptoms force patients to seek care—often when it is far too late. But the barriers do not stop at detection. Even when women are diagnosed, access to the tools that could save them—surgery, chemotherapy, radiotherapy, cancer medications—is severely limited. The result is stark: most patients die from their disease.
Hjelm's thesis examined several dimensions of this crisis. Her team looked at who actually received surgery in Uganda, how advanced disease was at the time of diagnosis in Ethiopia compared to Sweden, which tumor types were most common, and how many patients with hereditary risk factors could be identified. The findings were sobering. In Uganda, only a small fraction of women estimated to develop breast cancer actually underwent surgery. In Ethiopia, patients arrived at diagnosis with more advanced disease than their Swedish counterparts. Most damning: only one in five patients with disease that could theoretically still be cured managed to start and complete their full recommended treatment—surgery, chemotherapy, radiotherapy, and hormonal therapy combined.
One discovery stood out. More than 20 percent of the patients studied carried pathogenic mutations in genes known to confer very high breast cancer risk: BRCA1, BRCA2, or PALB2. This prevalence is striking. It suggests that heredity may play a larger role in breast cancer development in Ethiopia than previously understood, and it points to a population where genetic testing and targeted surveillance could identify at-risk women before disease takes hold.
The implications are clear, though the solutions are not simple. Hjelm argues that strengthening breast cancer care in these regions requires action across the entire spectrum—from early detection programs to improved access to surgery, drugs, and radiotherapy, paired with genetic counseling and testing adapted to local conditions. By identifying high-risk individuals and offering focused follow-up, more patients could be diagnosed at earlier stages, when cure remains possible.
Hjelm's ambitions extend beyond the thesis. She wants to continue working in global oncology, building research collaborations between Swedish institutions and colleagues in low-income countries. Her vision includes developing and implementing new diagnostic and treatment-prediction technologies designed for resource-limited settings—tools that could work where resources are scarce but the need is immense. The work ahead is not about exporting Western medicine wholesale, but about creating solutions that fit the reality on the ground.
Bemerkenswerte Zitate
Most patients die from their cancer. This sharply contrasts with the situation in Sweden, where most breast cancer patients are diagnosed early and can be cured.— Tove Ekdahl Hjelm, doctoral student at Karolinska Institutet
By identifying high-risk individuals and offering follow-up focused on early detection, more patients could potentially be diagnosed at an earlier stage, when cure is still possible.— Tove Ekdahl Hjelm
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