MILICENT KAGONGA AMTANA OF NAIROBI, KENYA, had known for several years that something wasn’t right. She was just 20 years old when she began experiencing unusual vaginal discharge and then unexplained bleeding. Over time, her husband grew impatient with her symptoms and left the marriage. Friends and family also pushed her away.
She visited local health care facilities but received little more than antibiotics and painkillers. Eventually, in 2015, she convinced a nurse to conduct a screening test, which indicated that Kagonga Amtana likely had advanced cervical cancer. As a 25-year-old mother raising two children, the news filled her with despair. “I felt like it was over,” she recalls. “I grew up in a difficult situation, and the first thought that came to my mind is, ‘I am going to leave my children to suffer the way I struggled with life.’”
Kagonga Amtana returned to her rural home village and prepared to die. But a woman she knew convinced her to use the referral she’d received when she was screened. She visited a nearby hospital, where doctors explained that she had stage IV cervical cancer and outlined a treatment plan. She was referred to Kenyatta National Hospital in Nairobi, Kenya’s capital and largest city. It took more than six months for her to raise the funds she needed for blood transfusions and other aspects of her treatment, but she eventually received chemotherapy and radiotherapy and completed treatment in 2018. She requires continued monitoring and experiences lingering pain.
In the United States, where regular cervical cancer screening is common, the disease is usually caught and treated in the precancer stage. But in countries such as Kenya, where screening is sporadic, cervical cancer is often unchecked until it has progressed to an advanced stage.
“Low- and middle-income countries carry more than 80% of the burden of cervical cancer cases in the world,” says Ruanne Barnabas, an infectious disease specialist at Massachusetts General Hospital in Boston who studies cervical cancer in low- and middle-income countries including Kenya. “Those cervical cancers get diagnosed so late, and mortality is very high. More than half of people diagnosed die from cervical cancer worldwide. There are about 600,000 new cases diagnosed a year and 300,000 deaths from cervical cancer a year globally from an almost entirely preventable disease.” Nearly 90% of those deaths occur in low- and middle-income countries.
In 2020, the World Health Organization (WHO) launched a global initiative to eliminate cervical cancer. The main goals include giving the human papillomavirus (HPV) vaccine to 90% of girls by the age of 15 to prevent the infection that causes most cases of cervical cancer; screening 70% of women by age 35 and then again by 45 with a high-performance test; and treating 90% of women with precancer and providing care for 90% of women with invasive cancer. These targets, designed to be met by 2030, are often referred to as 90-70-90.
Meeting these targets in low- and middle-income countries will be a challenge, given the barriers women face in getting screened and treated. These include traveling long distances and losing wages to see a health care provider and lacking child care for screening appointments. In some communities, there are social taboos against pelvic exams. Women may erroneously believe that a positive HPV test is a sign of promiscuity, and cancer itself is shrouded in stigma.
Addressing Unspoken Suffering With Better Support
New initiatives look to improve care for people with advanced cervical cancer in low- and middle-income countries.
While most efforts to address cervical cancer focus on the best methods for screening and treatment, public health experts note renewed interest in the palliative care needs of women with advanced cervical cancer. A September 2021 study in JCO Global Oncology quantified this suffering, finding that among women who die of cervical cancer in a given year, 84% experience moderate or severe pain and 63% have clinically significant anxiety. More than 40% of women with advanced cervical cancer are abandoned by their intimate partners.
In August 2020, the World Health Organization provided a framework to manage cervical cancer, including a push to integrate palliative care to address the physical, emotional and spiritual suffering of women in low- and middle-income countries. Julie Torode, director of advocacy and networks for the Union of International Cancer Control, who helped draft these guidelines, notes that such care is rarely available.
For example, many of these countries have only limited supplies of pain medications such as morphine needed for women with advanced cervical cancer. “Poor access to palliative care and pain relief is an unspoken global embarrassment,” Torode asserts. “Most of the world’s opioid analgesics consumed annually are used by only seven high-income countries.” She and others hope that increased attention on palliative care will make the relief of women’s suffering a universal goal of cervical cancer care.
At the same time, public health experts say 90-70-90 has prompted important changes and mobilized people worldwide to think creatively and collaborate on solutions. “I would say six, seven years ago, it felt like each country was on its own, deciding whether cervical cancer was going to be a thing they were going to tackle,” says Kyle Engelman, who has managed programs for Grounds for Health, a Vermont-based nonprofit with staff in Ethiopia and Kenya that provides cervical cancer screening to women working in the coffee industry and living in the communities that support it. “Nowadays, it feels like more of a collective effort reaching across countries to get it done.”
Improved Screening Capabilities
For decades, the Pap test has been viewed around the world as the gold standard for cervical cancer screening. For the test, a health care provider uses a speculum, a specialized medical instrument, to open the vagina and then collects a few cells from the cervix to test in a lab for signs of precancer or cancer. But in low- and middle-income countries, the Pap test is impractical because labs are not always accessible. In those situations, screening is sometimes conducted with a low-cost technique known as visual inspection with acetic acid (VIA), which involves applying a white vinegar solution to the cervix. Precancerous tissue turns white and a health care provider can remove it immediately using portable technologies such as cryotherapy or thermal ablation. If the woman has large lesions that can’t be removed with that equipment, or if the health care provider suspects that the woman has invasive cancer, she is referred to a hospital for more definitive diagnosis and treatment.
But new screening tests are increasingly taking the place of Pap tests and VIA globally. They use a swab to check the vagina for DNA or RNA that indicates the presence of HPV, the cause of most cases of cervical cancer. A negative test means a woman has a very low risk of cervical cancer and does not need to repeat the test for at least five years. A positive test means she is at increased risk of cervical cancer. While she does not necessarily have cancer, follow-up is needed to check for the abnormal cell changes of precancer or cancer of the cervix.
“It’s now been clearly seen that HPV testing is much superior to Pap smear testing in terms of both sensitivity and specificity,” says health disparities researcher Surendranath Shastri of the University of Texas MD Anderson Cancer Center in Houston. He helped lead a study in India that showed that screening women for HPV just once significantly reduced cervical cancer mortality over the following eight years. Shastri is co-chair of an American Society of Clinical Oncology committee on cervical cancer prevention. The committee wrote screening guidelines advising that all countries work toward using the HPV test and recommending the VIA vinegar test if the HPV test is not yet available.
Shift to Self-Sampling
In an important shift, some governments and organizations are giving women the option to “self-sample” with the HPV test. A woman receives a test kit, often by mail, and uses the enclosed swab to take a sample of cells from her vagina. She mails the swab to a lab for analysis, and results can be sent to her phone. “Most of the studies we have show that the accuracy of testing, whether it’s done by a woman at home or collected by a health care provider in a clinic, is the same,” Shastri says.
Self-sampling is central to a program addressing cervical cancer in Malaysia. At a 2017 meeting, gynecological oncologist Yin Ling Woo of the University of Malaya in Kuala Lumpur was chatting with her colleague Marion Saville, executive director of the VCS Foundation, now called the Australian Centre for the Prevention of Cervical Cancer, about Australia being poised to become one of the first countries to eliminate cervical cancer. Saville suggested that HPV self-sampling, a new technology at the time, could help Malaysian women.
Malaysia lacks a robust medical infrastructure, and women rarely have established relationships with health care providers. But Woo noted that most women have mobile phones. She worked with software engineers who volunteered to develop a secure mobile platform to deliver test results and connect women with follow-up care if needed. With crowdfunding and corporate support, she launched a pilot of Program ROSE with the goal of removing obstacles to cervical cancer screening. For the pilot, her team screened more than 4,000 women in 15 months. Five percent of women showed evidence of HPV infection, which meant that they were at increased risk of cervical cancer, and 89% of these women received follow-up care.
Some women were initially worried they would injure themselves with the swab, but most found it painless and easy. “Ninety-eight percent of women said that they would do the test again,” Woo says. During the COVID-19 pandemic, she adds, the women grew familiar with using similar swabs in their nose, which reduced anxiety about self-sampling.
The successful pilot led to the creation of the ROSE Foundation, which continues the testing program. At the beginning, ROSE sent swabs to Australia for analysis in the VCS lab, but since then, Woo has opened a ROSE lab to process the swabs in Malaysia. If a woman receives a positive test, the ROSE team calls her to provide information and referrals to follow-up care.
Grounds for Health has traditionally held daylong events where they screen women with the VIA vinegar test and treat precancerous lesions immediately. In response to the WHO recommendations, which call for the use of “high-performance” tests, they are working to switch entirely to the HPV test. But that will take time. “Frankly, it’s more expensive than doing a vinegar test,” says Ellen Starr, executive director of Grounds for Health. For now, she adds, “we’re not giving up on VIA because that is what we have, and it’s a perfectly good screening test.”
Many hospitals and labs gained PCR testing capability during the COVID-19 pandemic, and the same equipment is used to process the HPV swabs. But this doesn’t help women in very remote areas, where there are no hospitals or labs. Grounds for Health is currently working to purchase small PCR testing machines that its teams can transport to screening events.
The Power of Vaccination
In addition to screening, the HPV vaccine is a powerful tool to eliminate cervical cancer. The human papillomavirus is a common infection that typically has no symptoms. “Just about everyone who is sexually active gets HPV,” says Barnabas of Massachusetts General Hospital, and the infection clears on its own in most people. Still, in some, the infection triggers cell changes that eventually lead to cancer. Research shows that the HPV vaccine prevents more than 90% of HPV infections that cause cancer. Yet just 15% of people eligible for the vaccine according to WHO guidelines have received it worldwide, Barnabas says, a far cry from the WHO goal of 90% of eligible people vaccinated.
Kagonga Amtana in Nairobi has become a fierce advocate for HPV vaccination of young girls in Kenya. Given her own cancer diagnosis, she was eager to get her daughter, Grace, vaccinated. In 2019, Grace, then 10 years old, was the first girl in Kenya to receive the vaccine, followed by a second dose six months later.
Current WHO recommendations advise two doses for girls under 15 and three doses for those over 15, but this could be changing. A study, led by Barnabas and published in April 2022 in NEJM Evidence, looked at vaccination in more than 2,000 women ages 15 to 20 in Kenya and found that a single dose of HPV vaccine provided 97.5% protection against the two HPV types that cause 70% of all cervical cancers.
With just one dose needed, the vaccine could go to more people. “This is just a game changer in terms of increasing access,” Barnabas says, noting that experts are revisiting whether one dose of the HPV vaccination could be just as effective as the current recommended two doses.
Like Kagonga Amtana, many Kenyan parents seem eager to get their daughters vaccinated. “When you ask people, ‘Does anyone know someone who’s dying from cervical cancer?’ many hands go up,” Barnabas explains. “The idea that you could have a vaccine to prevent cervical cancer is really very compelling.”
Rwanda, a small country roughly the size of Maryland, was the first African country to implement a national plan to vaccinate girls against HPV, driven by the advocacy of the first lady of Rwanda, Jeannette Kagame. Cervical cancer remains one of the most common forms of cancer among women there, but HPV vaccination coverage increased from 6% for girls born in 1993 to 99% for those born in 2002, usually through school vaccine programs. The vaccination effort has been funded both by the Rwandan government and Gavi, a worldwide vaccine alliance. These efforts could put Rwanda on track to eliminate cervical cancer soon, much like Australia.
In 2017, the Rwandan government asked BIO Ventures for Global Health (BVGH), a nonprofit based in Seattle, to build the Educate, Screen, and Treat (EST) program for women’s cancer in the Bugesera District, south of the capital city of Kigali. The company launched the program, says Jennifer Dent, BVGH’s president and CEO, with funding from multiple organizations, including Johnson & Johnson. BVGH trained 581 community health workers to educate women about cervical cancer and nurses, midwives and obstetricians-gynecologists to conduct procedures to remove precancerous and malignant lesions. The EST program also introduced a smartphone technology that builds on the VIA vinegar test by allowing health care providers to take images of the cervix and use artificial intelligence to help increase the accuracy of screening.
BVGH had hoped to expand the program to four more districts, says Dent, but a lack of funding halted those plans. “I am hopeful that organizations that have funding to facilitate screening and treatment for women’s cancer will work with [the Rwandan government] to support the country’s cancer plan,” Dent says.
Gathering All at the Table
To truly meet the 90-70-90 targets, low- and middle-income countries need to shift beyond pilot programs and short-term campaigns to make cervical cancer screening and follow-up a routine part of life, says Barnabas of Massachusetts General. “We need community partners. We need funders and partners and physicians all at the table to solve this problem together and to think about how we can really simplify the way people get vaccination and [receive] screening.”
On a local scale, Milicent Kagonga Amtana, now 33, is doing her part to break down the stigma and shame around cervical cancer. Despite her own pain and health challenges, she works hard to encourage women to be screened for HPV and to have their daughters vaccinated. She also counsels others diagnosed with cervical cancer, working to be “a walking stick” for them on their journey. “I feel like I’m the first young woman in Kenya to speak about cervical cancer the way it is,” she says, “and to be open enough so that I can protect more women.”
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