Uncounted, unhealed: Uganda’s silent surgical crisis!

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OPINION

By Dr Bob Marley Achura

In 2015, I co-led an operational research study with Dr Jamima Lindsey of the University of Aberdeen. Our mission: to assess the quality and reliability of Uganda’s health data systems. What we uncovered was stark.

The country’s capacity to collect, validate, and utilise routine health information was, by global standards, deeply compromised. Uganda consistently failed to meet the World Health Organisation’s core benchmarks for health data, including completeness, accuracy, timeliness, and usability.

Our systems, which were heavily decentralised, relied almost entirely on data from government health facilities. Yet, fewer than 40% of Ugandans, particularly in rural regions, accessed care through these facilities. The result? Massive blind spots in disease surveillance and a dangerous reliance on modeled estimates, what we came to call “guestimates.”

The data dilemma: Obstetric fistula in Northern Uganda

Fast forward to 2020. I was leading a maternal health implementation program focused on obstetric fistula repair in Northern Uganda. This time, the challenge wasn’t surgical skill or infrastructure; it was data. Once again, we were navigating a vacuum: no centralised database of fistula cases, no harmonised reporting among NGOs, and no functioning surveillance tools at the district level. We had stories, plenty of them, but almost no statistics to guide our interventions. And behind each missing number was a human life. One of them was my niece, Miriam Amuge.

Miriam’s story: From silence to strength

Miriam was just 23 when she gave birth in a small rural health outpost in Gulu District. The labour was prolonged and obstructed, and the clinic had no surgical capacity. By the time she was transferred, delayed by poor roads, no ambulance, and stigma, it was too late. She developed a vesicovaginal fistula, a condition that left her incontinent and isolated.

Her husband left. She was ridiculed at the borehole. For four years, she withdrew from community life, surviving in shame and silence. No health worker came. No official took note. Miriam’s name appeared on no list. She was, for all intents and purposes, invisible. Eventually, through a chance encounter with a community health volunteer, she accessed a surgical camp. Her repair was successful. She now walks with dignity, mentors other survivors, and helps identify new cases. But the question haunts me still: How many more Miriams are out there, unseen, uncounted, unhealed?

We asked ourselves: how can a country tackle the leading causes of death among mothers and babies when so many of their stories are never recorded?

The truth was, and still is, Uganda lacked a unified, real-time health data system that could capture both community-level experiences and clinical interventions. Without this, countless women like Miriam are erased from statistics and denied the support they deserve.

The scope of the invisible epidemic

Obstetric fistula should be nearly eradicated in any health system with basic surgical services. Yet in Uganda, it remains a quiet epidemic. The Uganda Bureau of Statistics (UBOS) estimates over 200,000 women may be living with fistula, with 1,900 new cases each year. And yet, between 2016 and 2020, fewer than 6,000 surgical repairs were recorded by the Ministry of Health. That means over 90% of fistula cases go untreated or undocumented.

In post-conflict Northern Uganda, the figures are even more alarming. A 2018 UNFPA study in the Acholi sub-region found that only 1 in 4 women with fistula symptoms had ever accessed screening, let alone surgery.

Meanwhile, 70% of deliveries in rural Northern districts still occur in facilities without emergency obstetric care (EmOC) capacity. Fistula is both a clinical and systemic failure. It arises from obstructed labour, yes, but also from broken referral chains, poor transport systems, gender inequities, and, crucially, data invisibility.

Cleft lip and palate: A parallel crisis of invisibility

While obstetric fistula is widely acknowledged as a marker of maternal health system failure, cleft lip and palate (CLP) represents a similar crisis among children. Affecting an estimated 1,100 to 1,500 newborns annually in Uganda, CLP is a correctable congenital condition. Yet, like fistula, it suffers from:

• Absence in national HMIS and reporting systems.
• Limited surgical capacity, especially in rural areas.
• Stigma and discrimination.
• Donor-dependent surgical missions with no consistent follow-up.

Families face delays in care due to a lack of referrals, poor transportation, and misinformation. Many children suffer from malnutrition because of feeding challenges. Thousands remain unrepaired and uncounted. There is no national registry for cleft cases, no standardised referral protocol, and no district-led coordination.

Fragmentation and failure: The cost of poor data

In one district, five different NGOs were running parallel fistula programs, each with separate reporting formats, donor requirements, and beneficiary lists. Not one coordinated with the district health office.

In another parish, 130 women waited on handwritten lists maintained by community volunteers, entirely absent from national planning. Similarly, cleft surgeries in Uganda are heavily reliant on external charity missions. Outreach teams conduct repairs during brief surgical camps, often with no integration into HMIS and minimal post-operative monitoring. Like fistula, cleft lip and palate is managed in silos, missing from strategic health investment frameworks.

The Health Management Information System (HMIS) doesn’t include a dedicated field for either condition in most routine reporting forms. Community health workers, who are often first to identify cases, lack training, tools, or official channels to refer and record them. What results is a patchwork of noble efforts and tragic inefficiencies.

• Without data, there is no visibility.
• Without visibility, there is no urgency.
• And without urgency, there is no justice.

Global lessons, local imperatives

We know what works because others are doing it. In Rwanda, the Community Health Information System links village health worker data with the national e-health platform. This integration helped reduce maternal mortality by nearly 60% from 2000 to 2017. Immunisation coverage now exceeds 90%, thanks in part to real-time tracking and rapid response capacity.

Tanzania has rolled out electronic medical records (EMRs) nationwide. In regions like Kigoma, maternal deaths fell by 40% in five years, driven by data-informed deployment of emergency obstetric services. These systems weren’t perfect at inception, but they were ambitious, inclusive, and responsive.

Uganda can follow suit. We must move beyond pilot projects and fragmented donor programs toward a national, government-led transformation in how we collect, coordinate, and use maternal and congenital surgical health data.

A vision for change: From shame to systems

We must act. Specifically, we call for:

1. A National Surgical Inclusion Policy mandating the integration of obstetric fistula and cleft lip and palate into the National Surgical, Obstetric, and Anaesthesia Plan (NSOAP).
2. A National Fistula and Cleft Case Registry integrated into HMIS and updated collaboratively by NGOs, CSOs, and government entities.
3. Digital tools for Village Health Teams (VHTs) to log, refer, and track suspected cases in real time.
4. Standardised national indicators and reporting formats for both conditions across all implementing partners.
5. Mobile surgical camps with linked data systems, equitable post-operative follow-up, and integration into local health budgets.
6. District-level health data units empowered and resourced to lead mapping, outreach, and monitoring.
7. National public awareness campaigns to reduce stigma and promote timely access to surgery for both women and children.

These reforms must not be funded as isolated donor projects but institutionalised as part of Uganda's core public health infrastructure.

Let us count every woman and every child

The crisis of obstetric fistula and cleft lip and palate in Uganda is not just clinical; it is moral. It is a test of our national conscience and our willingness to count those who have long been left behind. We cannot solve what we do not see. We cannot heal what we do not count.

We owe it to Miriam, and to thousands like her, including every child with a cleft, to do better. Let us be the generation that put every mother and every child on the map. That made data a tool for equity, not exclusion. That built a system where no woman or child ever has to live and suffer in silence again.

The writer is a global health expert and maternal health systems researcher with over two decades of experience across Sub-Saharan Africa. He led one of Uganda’s largest fistula recovery programs and is a strong advocate for equitable, data-driven surgical policy for underserved communities.