SAN FRANCISCO — After Pinki Rawat lost her sister-in-law to cervical cancer, she saw the disease as a certain death sentence — and in many places it is. Left untreated, it is an extremely painful way to die: The cervix enlarges, pushes through the vagina into other areas of the body, and ultimately causes women to bleed to death. Cervical cancer kills more than 270,000 women a year, nearly 90 percent of them in countries where the majority of the population doesn’t have access to preventive services.
Rawat lives in India, where over 70,000 women die each year from cervical cancer — more than anywhere in the world. The country has not introduced the vaccine for human papillomavirus, the sexually transmitted virus that is the primary cause of cervical cancer, in its immunization program and has inadequate screening for the disease. Fortunately, Rawat did not become a statistic. She went in for a screening, which revealed precancerous lesions, then was treated with cryotherapy to freeze them away.
More women die of cervical cancer in India than anywhere else in the world. Why are organizations struggling to garner resources and support to combat this disease?
Over the past three years in India, Population Services International has piloted the visual inspection with acetic acid method, or VIA, a low-cost solution that uses vinegar to screen for cervical cancer. It is an alternative to the Papanicolaou test, more commonly known as the Pap smear, which has dramatically reduced rates of cervical cancer in high-income countries. But unlike Pap smears, VIAs can be easily implemented in low-resource setting and patients can be treated for precancerous lesions on the spot. Following the PSI pilot, the state of Uttar Pradesh committed to incorporating cervical cancer screenings into its noncommunicable disease clinics.
The work was funded by Kathy Vizas, who was optimistic when she began her work with Maverick Collective, an initiative of PSI that partners with philanthropists who invest a minimum of $1 million over three years to pilot health solutions for girls and women in developing countries. But the more she learned about cervical cancer, the more convinced she became that the disease is preventable with the tools that are currently available: Nearly all cervical cancer deaths could be avoided if adolescent girls were immunized against HPV and if women were screened and treated, according to the World Health Organization.
After three years of work in India, Vizas found that the larger donors she approached were not interested in supporting and expanding the work. This follows a trend of cervical cancer programs ramping up then scaling back, leading her and other advocates to conclude that what stands in the way of eliminating this preventable and treatable disease is a lack of knowledge, urgency, and — above all — funding.
“When the India project ended, we’d had success, but my feeling was: ‘So what?’” she told Devex. “I was frustrated because this felt like such an obvious problem that was not being solved.”
Vizas is the co-founder of TogetHER, a new initiative founded in February that focuses on advocacy and communications to end cervical cancer. The public-private partnership is fundraising from traditional and new donors, such as high and ultra high net worth individuals in order to raise the consistent funding needed to scale HPV vaccines globally, integrate cervical cancer screenings into other women’s health programs like HIV screening or family planning, and educate girls and women about the importance of getting vaccinated and screened. Over the weekend, at the World Health Assembly in Geneva, Switzerland, WHO’s Director-General Dr. Tedros made a global call for action toward the elimination of cervical cancer, and TogetHER hopes to build on that momentum by supporting WHO in this effort and driving the discussion on how to achieve that goal beyond WHA.
‘Money, money, money’
A 2016 study outlines just how much it would cost to end cervical cancer: $13.6 billion over 10 years to achieve full coverage by 2024 of a two-dose HPV vaccinations for all 10-year-old girls and one-time screenings for older women in all low- and middle-income countries.
Earlier this month, Gavi, the Vaccine Alliance, announced that the HPV vaccine would be introduced in Zimbabwe, with the aim of reaching 800,000 girls between the ages of 10-14. UNICEF, WHO, and other partners will work together with the Zimbabwe Ministry of Health and Child Care on implementation. But while in an ideal world, every girl and boy would be vaccinated against HPV, the supply cannot keep up with the demand, the vaccine will not prevent all cases of cervical cancer, and many sexually-active women have already contracted HPV, which is why TogetHER is among the initiatives emphasizing screen-and-treat programs as part of the solution.
“Currently, there is pretty significant investment in vaccines through Gavi, and there is also continued investment by the [Bill & Melinda] Gates Foundation in technologies, but there is no investment in screening and treatment with the given technologies,” said Raveena Chowdhury, deputy director of cervical prevention at Marie Stopes International. “VIA is not a perfect technology, but we’re doing the best we can with the given technology, and even if it is imperfect, we will have the infrastructure in place, so if better technologies come in place we can take them and run with them.”
Despite the fact that cervical cancer is usually preventable, because there has not been major donor support, well-intentioned efforts have had limited impact, said Paul Blumenthal, a professor of obstetrics and gynecology at Stanford University Medical Center who has worked on cervical cancer prevention in a range of low-income countries.
When Devex asked what stands in the way of ending cervical cancer, Blumenthal, who is also the global medical director for PSI and has advised the TogetHER initiative as it takes shape, answered “money, money, money,” combined with what he described as the lack of a truly public health approach to solving the problem.
“The public health approach usually indicates you're going to put population needs ahead of individual solutions. So, while in the U.S. the best possible treatment is what we aim for, that is not necessarily feasible in many of the settings where the need is the greatest, so you may need to sacrifice some of that to get the coverage,” Blumenthal said.
The global health community needs to think about cervical cancer prevention in the same way that it thinks about immunization programs, he said. Major funding would allow existing cervical cancer treatment and prevention efforts to be scaled up, even as new approaches are researched or developed. With more money, efforts to develop less invasive tests and faster results could also go beyond small scale studies.
Blumenthal has worked in countries such as Thailand to promote single visit approaches rather than the Pap smear, which requires a return visit if treatment is needed. “In many developing countries, we may just have one shot to see a woman at the right age, and do the best we can for her,” he said. The key is to catch either precancerous lesions or early stage cancer before it develops into the later stages and becomes fatal, but in Thailand, the funding was not in place to really follow through on the project.
“When projects are entirely NGO-driven and donor funding runs out, we go back to zero and it is like nothing happened.”— Dr. Carolyn Nakisige, head of gynecological oncology at the Uganda Cancer Institute
And that follows a trend. Chowdhury told Devex about a $16 million project that brought Marie Stopes International, PSI, and the International Planned Parenthood Federation together for four years of cervical cancer screening and preventive therapy in Kenya, Uganda, Tanzania, and Nigeria. The project reached its goal of screening 1.2 million women, but when the Gates Foundation grant came to an end in 2016, the organizations had to scale their work back.
Recently, Marie Stopes International, PSI, and IPPF came together along with other partners to apply for the Macarthur Foundation’s 100&Change competition, with a proposal to screen 5 million women for cervical cancer in five African countries, but they did not make it to the finals.
Global Good, a collaboration between the Seattle, Washington-based invention company Intellectual Ventures and the billionaire philanthropist Bill Gates, is developing new technologies to address global health challenges including cervical cancer. Celina Schocken, the other co-founder of TogetHER, said it was her time working on global health innovation at Global Good that led her to focus on cervical cancer.
“What we’re seeing is a combination of activist individuals, combined with philanthropists, combined with this impatience to make change, creating a groundswell of new ways of thinking about things.”— Gabrielle Fitzgerald, founder and CEO of Panorama
“By the time someone is 30 years old, we’ve almost written her off, and we don’t worry about her issues,” Schocken said. “I don’t think that’s the way to treat women who are raising their families. And we know the state of the family falls apart when these women die, and we can do something about it.”
Schocken, who connected with Vizas through her own consulting with PSI, has experience fundraising for cervical cancer, having previously served as chief executive officer of Pink Ribbon Red Ribbon, a partnership to leverage public and private investments to fight cervical and breast cancer. Vizas put forward seed money for TogetHER, and she and Schocken are raising funding to take the initiative beyond its six months of runway funding, in order to support their own operations and also the work of partner NGOs they bring on board. Currently, Panorama Global in Seattle is the fiscal sponsor for TogetHER, handling the back end so that Schocken and Vizas can hit the ground running, with the option to set up a nonprofit organization in the future if they choose to do so.
“What we’re seeing is a combination of activist individuals, combined with philanthropists, combined with this impatience to make change, creating a groundswell of new ways of thinking about things,” said Gabrielle Fitzgerald, the founder and CEO of Panorama.
Concerns about the future of U.S. foreign aid under the administration of President Donald Trump, and developments such as the “global gag rule” have accelerated this trend of individuals taking action on global health priorities themselves rather than waiting for institutions to lead, she said.
“The instinct is to say, ‘Who else is doing this?’ I don’t think people want to build new organizations for the sake of building organizations, but they do want change to happen faster. I’ve had a lot of conversations with people where I’ve said: ‘You can be the solution.’”
This is not the first effort to drive more dollars toward cervical cancer vaccination, screening, and treatment. For example, in 2015, Cervical Cancer Action launched the five-year initiative Cervical Cancer Prevention Initiative, which aims to scale up prevention services, encourage innovation and shared learnings, and track progress and encourage accountability. But TogetHER is different than CCPI in part because it is targeting donors that have traditionally not been involved in cervical cancer treatment and prevention.
Schocken and Vizas are in the process of identifying donors that can become champions of the cause. One example is Linda Lane, president of Harbor Health Systems, and president of the Women to Watch Foundation, which recently provided funding to TogetHER and is now working to get others on board.
“Celina and Kathy can talk about the need, but I can talk about the responsibility,” she said. “My pitch is: Of all the places our dollars are going, there is a catastrophic problem in developing countries where women and girls are dying of something 100 percent preventable.”
Lane, who has a personal connection with cancers affecting women as her sister is a breast cancer survivor, sees this as a way to get bang for her buck as a philanthropist and support real outcomes for girls and women. Advisers of TogetHER say high net worth donors are wanting to take big bets, and when they look at cervical cancer, they see a disease they can help to bring to an end.
Toward guarded optimism
Beyond money, there are a number of challenges that stand in the way of ending cervical cancer, from misconceptions about vaccines — which is a challenge across many diseases but with HPV in particular given that it is spread through sexual intercourse — to fears about screening or treatment.
Yet over the past 25 years, the view of cervical cancer has changed from resigned acceptance of what was seemingly inevitable “to guarded optimism that we are on the brink of eliminating this dreaded disease that has taken so many women in the prime of their lives,” wrote Vivien Tsu, an expert on cervical cancer at the international NGO PATH, in the International Journal of Gynecology and Obstetrics.
Advocates for action on cervical cancer call this a disease of inequity, pointing to how lives could be saved if only proven methods of treatment and prevention were expanded from wealthier countries to low-resource settings.
In Uganda, only 4.8 percent of women have been screened for cervical cancer, said Dr. Carolyn Nakisige, head of gynecological oncology at the Uganda Cancer Institute.
Nakisige and her team are seeking funding to test alternatives to cryotherapy in screen-and-treat programs given the high cost and limited availability of gas for cryotherapy. She also hopes to test the effectiveness of collecting vaginal specimen as an alternative to the speculum so that only women who are HIV positive — which makes them up to five times more likely to get cervical cancer — need to get a pelvic exam. Nakisige expressed frustrations about finding donor funding for cervical cancer, saying she commends TogetHER and any efforts to broaden the focus beyond HIV, malaria, and tuberculosis.
She also added that she hopes these dollars will go toward projects that are not entirely NGO driven.
“We need to work with government-related parties,” she said. “When projects are entirely NGO-driven and donor funding runs out, we go back to zero and it is like nothing happened.”
In India, government partners were initially hesitant when PSI came to them with the pitch for the VIA screen-and-treat pilot because they saw the model as too low-tech, according to Heather White, senior technical adviser for noncommunicable diseases at PSI, who worked with Vizas on the cervical cancer screenings in India.
The grant from Vizas was catalytic in getting the state of Uttar Pradesh to invest in cervical cancer screenings, demonstrating ways that philanthropic dollars can lead to more investment from governments or bilaterals or multilaterals, which is what will ultimately be needed to end cervical cancer for good, she said.
White acknowledged that TogetHER builds on other efforts to raise awareness about cervical cancer as a solvable problem, but she said Vizas and Shocken are in a unique position to mobilize ultra high net worth individuals who do not just want to make site visits and shake hands, but rather roll up their sleeves and solve the problem.
For more coverage of NCDs, visit the Taking the Pulse series here.