On a dusky Friday evening, 38-year-old Tubeerawo Edisa, a mother of eight, sits happily chatting with her family as she prepares a warm bath for her two-year-old granddaughter. These days, Edisa cherishes moments like these more than ever.
Just three years ago, she “was at death’s door” and feared she would die from cervical cancer.
When she was at her worst, Edisa could not leave her house. She had to wear two pairs of underwear and bits of cloth to deal with the painful vaginal discharge of pus, water and blood. Life was unbearable.
Eventually, Edisa found relief and treatment through treatment at the Kigandalo Health Centre IV in Mayuge, the Eastern Ugandan district where she lives. Due to her advanced symptoms, she was later referred to the Uganda Cancer Institute at Mulago National Referral Hospital where she was able to get a hysterectomy, and now lives cancer-free.
Edisa’s story, however, is a rare exception. In Mayuge, efforts to address the causes of cervical cancer and treat those who suffer from it are few and far between. The district’s healthcare system is imperilled by governmental neglect, insufficient funding and a lack of training for health officers, all of which restricts the care given to women suffering from the illness.
Uganda has the seventh-highest incidence rate of cervical cancer globally, and the second-highest in East Africa. Almost 7,000 new cases were registered in the country in 2023 and more than 4,600 women died from the illness.
Over 40% of all women screened at the facility test positive for pre-cancerous cells or human papillomavirus (HPV), an infection that can lead to cervical cancer, explained Jude Tadeo Munialo, Kigandalo Health Center IV’s medical officer. The national positivity rate is 39.1%, according to a study of over 24,000 HPV tests conducted country-wide between 2021 and 2023
Uganda has a six-tier healthcare system, ranging from Village Health Teams at level one to regional and national referral hospitals at level six. As a health centre IV, Kigandalo sits towards the upper end of this system and provides curative, preventive, maternity, outpatient and inpatient services.
Health centre IVs should have at least two medical officers to carry out this work, according to Mayuge’s district health officer, Betty Kawala. Yet Munialo is the only medical doctor at Kigandalo. Uganda’s government does not have the resources to deploy more, with only one doctor for every 25,000 patients in the country, far less than the World Health Organization’s recommendation of one doctor per 1,000 patients.
In the 2023/24 financial year, the health sector was allocated 6.5% of Uganda’s total national budget (UGX 4.05 trillion). This put the country’s health spending at just $23 per person that year. The WHO recommends that low-income countries such as Uganda spend at least $86 per person on healthcare. Spending on health has fallen to UXG 2.95 trillion in the current financial year – just 4% of the national budget – largely due to the decline in external funding following Uganda’s passage of the 2023 Anti-Homosexuality law, which reportedly chilled donor relations.
Mayuge’s local government, meanwhile, allocated over 8.5 billion Uganda shillings ($2.29m) - 25.4% of its total budget to its health department in the 2023/24 financial year. This compares to 10.18% for production and marketing, and almost 50% for education.
Kigandalo is the only cervical cancer-screening centre in Mayuge, and is overburdened as a result. It handles referral cases from lower-level health facilities across the district, including from remote island communities in Lake Victoria, but a shortage of medical personnel means it offers screening only on Wednesdays, when a gynaecologist from the Ugandan Cancer Institute (UCI) visits the centre.
The UCI, a nationwide public health facility specialising in cancer research, treatment and prevention, also hosts its only research centre in the Busoga region at Kigandalo Health Center IV. The UCI received 66 billion Ugandan shillings from the Ministry of Health and 25 billion from the African Development Bank in the last financial year, though it is not known how much of this funding went to its work at Kigandalo.
Some 464 women sought treatment – which the UCI also provides one day a week – after receiving positive diagnoses for HPV at Kigandalo last year. Munialo believes the actual number of cases is far higher, telling openDemocracy: “If we scaled up community-level screening activities, we would detect far more cases.”
The lack of public transport in the remote villages surrounding Kigandalo is another barrier to check-ups and treatments at the clinic. Patients who cannot afford boda boda (motorcycle taxis) may be forced to walk more than ten kilometres each way to the clinic.
To shore up the lack of care, the Ministry of Health provides Village Health Teams (VHTs) made up of ‘village health officers’, paid volunteers who work with the ministry to raise awareness on medical and health issues, including cervical cancer. The volunteers receive 10,000 Ugandan shillings ($2.70) a month, much lower than the national average of 25,000 Ugandan shillings ($6.70). Munialo says VHTs are poorly trained and often spread medical misinformation to patients, further complicating care.
Two mothers who were successfully treated for precancerous lesions after screening at Kigandalao told openDemocracy that health attendants including VHTs had misinformed them about how HPV is spread. One was told that long nails “scraping” the cervix during bathing caused cancerous cells, while another was told that “sitting on dirty surfaces” allowed germs to “enter them”, which could lead to cervical cancer.
These claims were debunked as medical misinformation by Frank Mugabe, a lead medical officer at the Ugandan health ministry’s department for non-communicable diseases. “It is not true that dirty surfaces or fingernails cause cervical cancer. There is no scientific evidence to back that up,” he told openDemocracy over the phone.
The World Health Organization’s guidelines state that HPV is spread primarily through “sexually transmitted infection which can affect the skin, genital area and throat”. While a person’s immune system may naturally get rid of the virus within six to 12 months of exposure, the infection may have already caused pre-cancerous cells that can take up to 20 years to develop into cervical cancer.
Fred Maka, who has been a VHT volunteer in Mayuge for 14 years, said that cervical cancer screening, treatment and prevention in Uganda are often also hindered by distrust and conspiracy theories, which may originate from anecdotal stories and misconceptions about women’s reproductive health.
Uganda launched its HPV vaccination campaign in 2015, with girls aged between nine and 12 offered two free vaccines six months apart. Those who receive both doses before any exposure to the virus are 97% less likely to develop cervical cancer. By 2021, 75% of Ugandan girls in this age range had received the first dose, and 44% received the second.
But despite the vaccine’s high efficacy, there is a vaccine hesitancy among residents, Maka explained. Some locals believe HPV vaccinations and early treatment procedures for cervical cancer, including thermal coagulation (which uses heat to destroy abnormal tissue), are part of a covert plan by the Ugandan government to sterilise women and “depopulate” the area.
There are not enough trained VHTs on cervical cancer according toKawala, the district health officer for Mayuge. Even those who are often haven’t received full, up-to-date training, she further explained.
The skills and education level needed to become a VHT are also minimal, with the only requirements being literacy in the local language and residency in the village.
Root Causes
Health experts have suggested that the high prevalence of cervical cancer in Mayuge is down to a number of socio-economic factors, none of which the government has tackled head-on. These range from the transient employment of many men in the district (who are typically the breadwinners) to teenage pregnancies and low education and awareness levels, as well as a patriarchal culture.
The average age of first-time mothers in Mayuge is between 14 and 16 years old, with local women having an average of 6.2 children each throughout their lives, according to Munialo, Kigando health facility’s medical offer. While there is no direct link between cervical cancer and teenage pregnancies, the World Health Organization says “young age at first pregnancy” is a “risk factor for [cervical] cancer progression”.
Much of the Mayuge community survives on fishing and sugarcane farming, which are highly mobile jobs. “Fishermen often have multiple sexual partners in different landing sites,” he explained. “Their sexual lifestyle carries a high risk of HPV spread,” said Issa Musulo, the research administrator at the Mayuge branch of the UCI.
Despite this, men have not been specifically targeted in messaging campaigns on cervical cancer, says Mugabe of the health ministry’s department for non-communicable diseases. The ministry believes it is more effective to focus its campaigns on encouraging women aged 25 to 49 to get regular screening for early detection and girls to get HPV vaccinations.
Musulo shared that the UCI has attempted to tell men about their role in HPV treatment and prevention, with campaigns at board game nights and bars, which tend to be male-dominated environments, as well as on the prime-time politics and sports radio shows that are popular in Mayuge.
But these efforts have been largely unsuccessful.
“Not very many men are interested in giving an audience to health workers,” Musolo said, adding that men generally regard reproductive health issues as women’s issues.
Aisha Namukose, a 40-year-old mother of seven, sought help at Kigandalo Health Centre in December 2023 after enduring months of painful irregular periods, chronic back pain and foul-smelling discharge. Namukose is the first wife of Hassan Bidusu, a respected herbalist and traditional healer in his community. For the first few months, he treated her with herbal medicines, but there was little change in her condition.
Bidusu accompanied Namukose for treatment at Kigandalo twice. He told openDemocracy that while he understands that “wounds and cancers are complex” and that his healing methods are “limited” in treating them, he does not agree with the diagnosis of stage 1 cervical cancer that his wife received at Kigandal.
Instead, Bidusu suggested she had complications from a tubal ligation (a female sterilisation procedure) carried out after the birth of their last child seven years ago. Despite her husband’s disbelief, Namukose went ahead with the cervical cancer treatment, which she is set to finish in a few months.
“Misinformation and disinformation can only be addressed by educating the patients’ sources of information,” said Niyonzima. “There is a need for more funding to address the sociocultural perceptions on cervical cancer.”
Other women interviewed by openDemocracy emphasised that support from male partners to be screened, and receive treatment if needed, for cervical cancer is vital, though not always given. Treatments often require women to abstain from sexual intercourse for four to six weeks. Three women from Mayuge who have undergone treatment for early-stage cervical cancer and the removal of precancerous cells told openDemocracy of being forced into sex by their partners during this period, resulting in severe pain and the need to restart their treatment.
“My husband thought I had another man and didn’t believe I was following the doctor’s instructions to avoid sex until I completed treatment,” Angela Kagoya, a 22-year-old cancer survivor told us.
Kagoya’s husband, Wante, a 25-year-old mechanic, told openDemocracy that he was initially sceptical of the doctor’s diagnosis of cervical cancer, after being spurred on by friends who told him that his wife might have contracted syphilis through infidelity. Eventually, when Kagoya’s health improved after she started on medication prescribed by Kigandalo, Wante came around.
Kayoga’s family is a model for what can happen when both men and women are properly informed about cervical cancer. Having undergone a loop electrosurgical excision procedure, which uses a thin wire to remove abnormal tissue from the cervix, she has been given the all-clear.
“I’m horrified at the reality that we could have kept using herbal medicine and hurt her progress instead,” Wante told openDemocracy. “Now that I know HPV is spread through sexual intercourse, I’m committed to staying faithful to my wife and family.”
Wante added: “If you focus on who brought the disease into the home, it can tear you apart, and the disease will still remain.”
Kagoya hopes to get her three-year-old daughter vaccinated against HPV as soon as she is old enough and has become an advocate for screening – encouraging those in her community to take action as soon as possible.
“My friends had also told me that cancer doesn’t heal, but I’m now healed,” she told openDemocracy. “I told them as soon as I finished my treatment because they’re fellow women. How can I hide this truth from them?”
