"When I get the results, I will feel normal," said Irene Anek, a 30-year-old single mother of two who also takes care of her elderly mother and her deceased sister's three children.
Two months ago, Anek went to a clinic in Kisenyi, a slum in Kampala, Uganda's capital city where she works occasionally selling maize, sorghum and millet on the roadside. "There is a sore in my private parts," she explained. "I'd been hearing from the TV, where they are teaching to go test for cervical cancer."
At the clinic she received an HPV-DNA test, a screening technique now piloted at several venues throughout Uganda.
A Canadian research team is examining its feasibility as an early detection option for cervical cancer. The test involves the collection of a specimen by way of vaginal swab and is later analyzed for the presence of Human Papillomavirus (HPV), the sexually transmitted infection that, according to the World Health Organization (WHO), is the cause of 99 percent of cervical cancer cases globally, particularly the strains 16 and 18.
"They told me to wait for the results. Then they'll call me," said Anek. "I've waited for two months. I went [to the clinic] and they said you wait, you wait."
The absence of her test results causes Anek a great deal of anxiety. She explained that it is not cervical cancer itself that she fears, but, rather, the practical considerations that come with potentially positive results. She is the sole income provider for her family, and she worries about the time, money and confusion that being thrust into the fragmented Ugandan health system often entails for cervical cancer patients.
Uganda has one of the highest incidence of cervical cancer in the world. Though the exact reason underpinning the problem is not known, the risk factors are well documented. According to a WHO report, population trends that appear to contribute to Uganda's elevated cancer incidence include high birthrates (the average Ugandan woman has approximately seven children), early sexual debut among women (the average age for a woman's first sexual encounter is 15), and the relatively high prevalence of HIV.
"Cervical cancer is a big problem for our country," said Iddi Matovu, the cervical cancer focal person for PACE , the Ugandan affiliate of Population Services International, an NGO.
Two years ago, PACE received funding from the Bill and Melinda Gates Foundation for promoting cervical cancer prevention in Uganda. Together with the NGOs Marie Stopes and International Planned parenthood (two other benefactors of Gates funding), Matovu and his team at PACE have designed and implemented a cervical cancer screening program that operates out of a network of private clinics throughout the country. Matovu explained that a focus of their cervical cancer programming is to identify pre-cancerous lesions through screening and treat those with such lesions on-site with cryotherapy, a technique that uses cold gases to burn cervical tissue. Problems arise, he says, when women with more developed lesions or cancer are referred elsewhere for more complex treatment.
"Our women are predisposed (to cervical cancer)," said Matovu. "People here have very many kids and the prevalence of HIV is high. That combined with a poor health system compounds it all. As a country we don't have an organized system to identify these lesions."
The Ugandan government is aware of the burden from cervical cancer weighing on the nation's women. The Ugandan Ministry of Health (MOH) has drafted a policy that addresses the nation's staggering rates in 2010. However, financial constraints stand in the policy's way of being fully realized.
"The political will is there," said Dr. Gerald Mutungi, the director of the MOH's Non-Communicable Diseases unit. "I get calls from members of Parliament asking to get cervical cancer [outreach] to their districts. But out of 10 requests we can afford two or three."
The MOH's cervical cancer prevention policy considers "capacity for referral and continued care for women with invasive cervical cancer requiring conventional radiotherapy" by 2015 a strategic objective and the "establishment of proper referral systems" a core intervention.
The policy suggests that the way forward is with the acquisition of seven new Cobalt-60 radiotherapy machines—there is currently only one radiotherapy machine for the entire country located at Mulago Hospital in Kampala—and the addition of at least 15 new radiation oncologists to Uganda's medical labor force.
However, delays related to a lack of consistent financing compromises the feasibility of the policy's 2105 target for full implementation. Though cervical cancer, and cancer in general, in Uganda is getting increasing attention, Mutungi explains that most of the country's healthcare funding, especially the dollars that come from international sources, are reserved for high-profile infectious diseases and illnesses such as malaria and AIDS.
"We have funding for HIV, but there is none that is earmarked for cervical cancer," said Mutungi. "The money gets lost in the other areas of the health sector."
Anne Alepo, a nurse a at the main health center in Nakasongola, a rural district in central Uganda, was trained to perform cervical screens in 2010, when PATH, an international nonprofit organization, came to set up cervical cancer prevention programming. She says that the women in her district are less likely to travel on their own accord to her health center, the primary facility for cervical cancer screening and first-line treatment in the district. Of those women who do come to see her, though, many wait until they have painful symptoms whose treatment would require a referral elsewhere.
"When you go and check the person [who] has delayed [her visit] and the whole cervix is eaten up," she said, "you can't even treat from here. They have to go to Mulago. They just go, 'Oh no, if I go to Mulago it will take like three, four days. Even if I don't have any relative that will help me there, how will I reach there? No, let me just go back and die.'"
The location of Mulago Hospital serves as a barrier for many women who live in more rural districts or remote villages across the country. The hospital, for instance, is several hours drive from Nakasongola, making a visit for cancer treatment an issue for poorer women who don't have the financial resources for transportation and the additional cost of staying in Kampala during their treatment. But Mulago, in partnership with the nearby Uganda Cancer Institute, is the only public hospital in Uganda that has the resources required for treatment of later stage cervical cancer cases.
"Mulago, where do I start?" said Dr. John Kamulegeya, a colleague of Alepo's and the former manager of the cervical cancer-screening program delivered by PATH. "Nakasongola being a distant community, people fear Mulago."
Kamulegeya conducted a study that assessed the attitudes and knowledge of cervical cancer among women living in Nakasongola. He says that before PATH came to his district most women knew about breast cancer, but few were aware of cervical cancer. "I think it's because of it being in a private organ and I think there has been more sensitization of breast cancer than cervical cancer," he said.
Kamulegeya is pleased with the growing awareness of cervical cancer in his community since PATH's arrival: The women he sees are becoming less afraid to be checked. A major challenge in his practice, he says, comes when referring his cervical cancer patients to other hospitals. He explains to his patients that the earlier their symptoms are treated, the greater their chances of survival are. However, without a national referral system, he says, it's very difficult to know the status of his patients once they have left Nakasongola.
"Most people think that cancers, when you get them, you're done. Like once you've got them that it's a death sentence, but that's not the case for cervical cancer," said Kamulegeya. "We send people, but it would be good to get feedback. But there is no way of getting the feedback that people we have sent have reached."
For those women who actually make it to Mulago, a chronically understaffed gynecological oncology ward is often yet another barrier to their treatment.
Irene Anek finds herself at the Mulago ward after finally receiving a telephone call about her results: She tested positive for HPV. She was instructed to go to the hospital for a second test, this time a pelvic exam to check for cervical lesions and cancer. But after spending three hours on a bus and then several hours waiting in line to be seen at Mulago, all she was given was an appointment to come back on another day.
"For an appointment I have to travel. I have to look for ways of coming," she said. "The number of people here are very many. You come in the morning, then you go very late, so also feeding yourself is difficult. I have now to be patient, to wait for the (test), for what they will tell me."
The broken referral system has created a cynical attitude towards the benefits of cervical cancer prevention in Uganda among some healthcare experts in the country. Dr. Jackson Orem, the Director of the Uganda Cancer Institute, acknowledges the pessimism he encounters among his colleagues.
"Some people say that without a working system, to diagnose early would not help," he said. "If a patient is found to have cancer, what are you going to do?"
Even so, Orem insists that preventive efforts such as regular and widespread cervical screens are the way forward with managing cervical cancer. There needs to be more financing and resources put into the development of a national healthcare system that is more responsive to the particular needs of cancer: prevention and early detection.
In "just taking it as one of 'those diseases,' that perspective is lacking. Cancer will fall by the way side. The louder diseases are the infectious diseases. They will take priority. When malaria, HIV, tuberculosis are put side by side with cervical cancer, cervical cancer won't get the resources," Orem said. "We need to look at cancer as a special case."