Step out of a car into St. Balikuddembe Market in Kampala, Uganda, and the first thing you notice is the noise. A deafening clatter rises over the warren of stalls, drowning out even the hawking of vendors and the haggling of shoppers. In the largest street market in Uganda, where locals bargain for second-hand goods, dozens of men hammer discarded garbage cans into cooking pots for sale. The nonstop din of their open-air workshop follows visitors into the waiting room of the St. Balikuddembe Health Care Centre next door.
“We’re in their factory,” said Dr. Noleb Mugisha, a physician and a research fellow with the Uganda Cancer Institute-Fred Hutch Cancer Alliance, “so we have to bear it.”
Mugisha is there for the same reason that health center itself is there: This is where to find the people who need his services.
The St. Balikuddembe Health Care Centre is an HIV/AIDS clinic founded by and funded since 2005 by Uganda Cares, a partnership between the Los Angeles-based AIDS Healthcare Foundation, local governments and a market vendors association. Hundreds of thousands of vendors and shoppers spend large parts of their days in the market, and vendors themselves came together first to organize HIV prevention efforts and later to request a clinic as the best way to ensure access to HIV testing, counseling and antiretroviral treatment.
Now Mugisha is working with the clinic to combat another disease that works hand in hand with HIV: cervical cancer.
Cervical cancer is caused by the human papillomavirus, or HPV, a common sexually transmitted infection that most people shake off. But because HIV weakens the immune system and also may work synergistically with HPV, HIV-infected women are more than five times more likely to develop cervical cancer than women without HIV. And in sub-Saharan Africa, the area hardest hit by the worldwide HIV/AIDS pandemic, transmission of HIV is mostly through heterosexual sex, with young women disproportionately affected.
In Uganda and throughout sub-Saharan Africa, cervical cancer is the most common cancer and the No. 1 cancer killer in women. But although significant progress has been made in setting up HIV clinics in sub-Saharan Africa – more than 9 million of the estimated 25 million people infected with HIV are now receiving lifesaving antiretroviral treatment – until very recently, little attention was paid to HIV-associated cancers.
“What good does it do to treat people with antiretrovirals for HIV,” asked Mugisha, “only to have them succumb to cancer?”
Cervical cancer used to be the top cause of cancer deaths in U.S. women as well. The introduction of the Pap test in the 1950s changed that. Cervical cancer is highly treatable when found early and regular Pap screenings led to a dramatic decrease in cancer deaths, making it one of the great success stories in cancer prevention.
Over the last three decades, a team of researchers from Fred Hutch and the University of Washington, led by Fred Hutch’s Dr. Denise Galloway, played a pivotal role in another breakthrough: identifying how HPV causes nearly all genital-tract and some head and neck cancers. Now a new test has been developed to screen for HPV itself, and vaccines are available to prevent infection in the first place.
But in countries that lack the physical infrastructure, trained personnel and financial resources to do screening, cervical cancer remains a leading cancer killer. And while Uganda is rolling out a vaccination program to prevent infections in young women who have not yet become sexually active, millions of women already are infected with HPV. The vast majority of those who develop cervical cancer don’t seek care at the Uganda Cancer Institute, or UCI, until they start experiencing vaginal bleeding or painful intercourse, symptoms that tend to appear when the cancer already is advanced.
Mugisha aims to help change that by taking advantage of a system that is already in place but until recently has focused solely on HIV.
“I’m passionate about the holistic approach because I have a family medicine background – I look at the whole context,” he said. “Our wish is that we can begin cervical cancer screening in every HIV clinic in the country.”
Mugisha’s role is to support the clinics that have secured the funding to begin screening by advising them and helping with training, which is one of the missions of the UCI-Fred Hutch alliance. He also is conducting research, under guidance from Fred Hutch scientists and with a grant from the American Society of Clinical Oncology, to see whether integrating such screening into HIV clinics will result in more women getting treatment at an earlier, more treatable stage than is now the case.
“You already have the infrastructure [of HIV clinics],” he said. “With a little additional support, you can really improve outcomes.”
So on a day late last month, Mugisha toured the St. Balikuddembe Health Care Centre with Dr. Ivan Mubangizi, one of two doctors in a clinic that in a typical day sees 100 to 150 patients.
For years, Mubangizi’s budget had no funding for cervical cancer screening, even though the clinic had a large number of patients with symptoms. With a population that is both poor and unfamiliar with the benefits of screening, it was hard to convince women to find the 5,000 shillings – or about $2 – to be screened at another local hospital or clinic that offered the service.
Recently, donors added funding for screening to his budget, so the clinic can offer it for free to women between ages 18 and 65 who haven’t been screened in the last two years.
In the two weeks since the program began, nurse Arlen Kabunga said she’s screened about 70 women. Three had been screened previously at least once in their lives, the rest, never. The women’s ages ranged from 22 to 48.
Mugisha asked if the women got their results right away. No, said Kabunga; they were given Pap tests and were awaiting results from a pathologist.
Mugisha noted that the UCI recommends a screening technique called Visual Inspection with Acetic Acid, or VIA, which the World Health Organization supports as an alternative to the Pap test in low-resource conditions. The cervix is inspected visually after applying acetic acid, the main ingredient in vinegar, which causes abnormal areas to turn white. Those administrating the test can be trained to “see and treat” these areas, which can develop into cancer, using liquid nitrogen to burn them off. More serious lesions are referred for treatment at the cancer institute.
For women above 50 years old and under 25, VIA can’t be performed because of changes in cervical cells. But for others, the advantage, besides lower cost, is that women get the results – and often treatment – immediately, without having to find the time to return for follow-up.
Screeners-in-training do 100 visual inspections, referring all of the patients for follow-up before being certified to judge on their own which women to treat and which to refer for further evaluation, Mugisha said. He also trains screeners to offer information on breast and other cancers, since women often have questions.
For now, Kabunga has been focused just on getting women to agree to screening of any kind. About 300 women who met the criteria came to the clinic for HIV care in the first two weeks. Less than a third accepted the offer of free screening.
Many people, she and others said, consider the symptoms to be the result of witchcraft – a hex put on a woman to make her less desirable to her husband.
For others, the examination of this private part of their bodies seems too invasive. It can take 20 minutes just to explain how the examination will be done, Kabunga said. The clinic is careful to keep men, including doctors, away.
And as with other cancers, many people assume a cancer diagnosis is a death sentence and see no point in learning that they have it.
“Most people think that it is not treatable and that screening is painful,” Mugisha said. “But if you get it at an early stage, it’s curable.”
The best system, Mubangizi agrees, is to train peer educators to go out into the market, give information on cervical cancer and encourage women to come in for screening.
That’s where Rosette Musoke comes in.
Musoke, 38, was diagnosed with stage 2 cervical cancer and successfully underwent radiotherapy and chemotherapy.
“She’s been doing counseling, offering a perspective that the rest of us can’t,” Mubangizi said. “She gives many of our patients confidence.”
Her perspective was hard-won. Her first symptom was bleeding after intercourse. That went on for three months before she went to Mubangizi, who was treating her for HIV. (She has been on antiretroviral therapy for six years.) The clinic did not yet offer cervical cancer screening, so he referred her to Kampala’s Mulago Hospital. When she heard the diagnosis, she cried.
“I was scared,” she said. “I thought I was going to die. I didn’t know anyone who had cancer.”
Hospital workers told her that some people are cured. Others told her that the treatment itself would kill her. Ultimately, it came down to Emmanuel, Kennedy and Daphne, now 20, 16 and 12.
“I didn’t want to leave my children,” she said. “I said, ‘Let me go under treatment.’”
The treatment itself was grueling. Radiotherapy caused vomiting and sores. Chemotherapy left her weak.
Her husband of 15 years was supportive and stayed with her in the hospital. Her children comforted her, saying, “Mommy, you’re going to be OK.”
And today, she is.
“I feel good,” she said. “I didn’t have complications. There’s no more bleeding. I’m OK. I’m working. That’s my life experience.”
Musoke already worked for the clinic as a peer HIV counselor, a position she had at first hesitated to take but now loves.
“A doctor told me they picked me out to do the work,” she said. “I told them, ‘I think I can, but I’m not educated.’ They said, ‘Don’t mind that, we’re going to train you.’ So I do this work, and I like it very much.”
She didn’t hesitate at all when they asked her to take on cervical cancer as well.
“I tell my story,” she said. “I tell them, ‘Though the treatment is painful, the results are good.’ They see what I look like. They get courage.”
Solid tumors, such as those of the cervix, are the focus of Solid Tumor Translational Research, a network comprised of Fred Hutchinson Cancer Research Center, UW Medicine and Seattle Cancer Care Alliance. STTR is bridging laboratory sciences and patient care to provide the most precise treatment options for patients with solid tumor cancers.
Mary Engel is a former staff writer at Fred Hutchinson Cancer Research Center. Previously, she covered medicine and health policy for the Los Angeles Times, where she was part of a team that won a Pulitzer Prize for Public Service. She was also a fellow at the Knight Science Journalism Program at MIT. Follow her on Twitter @Engel140.