Each October in the U.S., women are accustomed to hearing messages about early detection and breast cancer awareness. But what’s the best way to raise breast cancer awareness in countries with no mammogram machines and few cancer treatment centers?
That’s the quandary faced by global health experts like Dr. Ben Anderson of Fred Hutchinson Cancer Research Center and Seattle Cancer Care Alliance, a surgical oncologist and health systems researcher who, 15 years ago, helped create the Hutch-led international health alliance Breast Health Global Initiative, or BHGI. Anderson has spent the years since coming up with pragmatic solutions for low- and middle-income countries, where women are traditionally diagnosed at much later stages and misguided good intentions often result in squandered resources.
“A common error is to package up a bunch of mammography equipment and ship it off to some country where it sits in the corner because you don’t have the infrastructure to make it relevant,” he said. “In Latin America and Africa, the majority of women are presenting with palpable masses. If you don’t have a set-up where you can evaluate it, sample it and prove that it’s breast cancer, you’re unable to move forward. Screening in that setting is irrelevant.”
What’s more relevant, he said, is implementing a tailored triage approach based on the resources that are available.
That doesn’t mean Anderson and his team are parachuting into third world countries and MacGyvering mammogram machines out of spare parts. Instead, BHGI develops a flexible framework that can be used in a number of different countries to give patients the best possible cancer prevention, diagnosis and treatment bang for their ever-limited buck.
“You have to build a foundation before you build a first and second story,” Anderson said of the programs he and fellow BHGI researchers have put into place in countries like Vietnam, Tanzania, Ghana, Uganda, Colombia, Peru and Brazil. “You have to begin with what you’ve got.”
Dr. Catherine Duggan, a Hutch public health scientist who works with Anderson and BHGI's global collaborative partner Breast Cancer Initiative 2.5, said in the U.S., the five-year survival rate for breast cancer is around 90 percent, which means out of every 100 women diagnosed, nearly 90 are still alive five years out.
“That’s wonderful and attributable to advancements in treatment and early diagnosis,” she said.
But that sunny statistic doesn’t hold true for low-income countries. In some sub-Saharan countries, for instance, 70 out of every 100 women will die within five years of diagnosis. Sometimes, it’s because their cancer is particularly aggressive. More often, though, it’s because of delays, logistical challenges and/or lack of access to cancer care.
“It’s a whole combination of things,” Duggan explained. “First, you’re living in a remote area. There’s no health insurance. You have to have enough money to see your local doctor in a clinic and that could be two or three hours away.”
BHGI’s assessment of breast healthcare services in Tanzania, for instance, showed that women there traveled six hours on average to get to the one cancer treatment center in the country. The average time between first symptom and first care appointment? Around 20 months.
“Women are diagnosed much later in these countries,” Duggan said. “And you see all these horrific lesions. There are stories of women showing up with tumors so big, their breast just falls off. This is the heart of what we’re doing, trying to help.”
Stigma is another huge barrier to care in these countries. Duggan said one woman refused to seek treatment for her breast cancer until all of her daughters were married for fear they might not find husbands if anyone knew she had the disease.
“In Tanzania, if you say you have cancer, you might be shunned or divorced by your husband,” she said. “So people don’t seek care.”
Those who do try to pursue screening or receive a biopsy or treatment face an almost insurmountable bureaucratic obstacle course. A woman who finds a lump first has to save enough money to see a primary care doctor, who often tells her it’s an abscess and sends her home with antibiotics. After that, she has to save up money to see a specialist for a mammogram or ultrasound but since they are few and far between, she usually has to go to a regional hospital for a biopsy. After the biopsy, she then has to save again and finally travel with her tissue sample to the closest pathology lab for analysis. But Tanzania has a shortage of pathologists (ditto for radiologists, breast surgeons and medical oncologists) so again there are delays. If a lump (or other symptom) turns out to be cancer, the woman then has to save money so she can travel to the capital for treatment. And all the while, the cancer is spreading and getting worse.
“Treatment is free once you’re diagnosed with cancer,” said Duggan. “But all the stages up to that — mammography, biopsy, pathology and surgery aren’t free. You have to find the money for your medical care and travel and by the time you get there, it just might be too late.”
Not surprisingly, half of all women diagnosed with breast cancer in Tanzania die of the disease.
How does a team of scientists even begin to put together an action plan for a country mired in health care holdups?
It starts by putting together a crack team of collaborators. In addition to Anderson, a professor of global health and surgery at the University of Washington's School of Medicine and public health researcher Duggan, BHGI's core includes Hutch clinical researcher and SCCA breast cancer oncologist Dr. Julie Gralow; Hutch biostatistician Dr. Ruth Etzioni; SCCA radiologist John Scheel; and global health strategist Allison Dvaladze of both BHGI and the Women’s Empowerment Cancer Advocacy Network (WE CAN).
Anderson likens the group to a nerdy version of Marvel's The Avengers.
“They’re superheroes fighting crime,” he said. “We’re just well-intending individuals with varied skills teaming up to help women address cancer in low and middle-income countries. But I like the analogy.”
Usually, the first order of business when implementing change in a country’s breast health management system is conducting an assessment, like the one BHGI recently put together for Tanzania’s Ministry of Health, which pinpoints delays and backlogs; referral inefficiencies; equipment, medication and personnel shortages; and the need for standardized protocols and guidelines.
“We do a country-based institutional analysis,” said Anderson. “We analyze some component of the health care system to identify opportunities for next steps.”
After that, representatives of the country’s health care system work with the BHGI and other stakeholders (local clinics, regional cancer centers, etc.) to update diagnosis and treatment guidelines. Then they begin what Anderson and Duggan refer to as “phased implementation” of their resource-stratified recommendations.
“Implementation research takes you outside the test tube and into the real world where the women are,” said Anderson.
As a low-income country, Tanzania’s phased recommendations start with the very basics —developing and displaying educational materials to battle misinformation and raise breast health awareness; introducing patient record-keeping to clinics; repurposing obstetric ultrasound machines for breast imaging. They then move on to more sophisticated tweaks, like ensuring all breast tissue is saved for pathological analysis; offering decentralized endocrine therapy to all women with ER+ (estrogen receptor positive) tumors; and training health workers in clinical breast exams, medical history-taking and ultrasound imaging.
“The whole point is that it’s resource appropriate,” said Duggan. “You start at the basic level of breast cancer care and you shouldn’t move up to a higher level unless you’ve got certain aspects of care established properly. A country or region can’t go on to establish screening mammography if the health system can’t diagnosis and treat women with palpable disease properly.”
Duggan said tamoxifen (a drug used to treat ER+ tumors) is cheap and effective so low-income countries are advised to test for the estrogen receptor in breast tumor tissue. That’s not the case for another common target in breast cancer, HER2.
“In Tanzania and other low income countries, there’s no point in testing for HER2 because nobody can afford Herceptin and the test itself is very expensive,” she said.
In middle-income countries like Peru, the initial steps are the same — a health care assessment plan and phased implementation — but the starting point begins further along the care continuum.
“Peru has more cancer centers and much more widespread infrastructure, but they have a lot of problems that stem from a dysfunctional referral system,” said Duggan, who along with Anderson and others, authored a study* published in The Lancet earlier this month about BGHI’s efforts there. “People get stuck with their wheels spinning and don’t get referred quickly enough. Or they live in remote areas and have to travel to receive care.”
The country has made important inroads through its national cancer control plan and early diagnosis programs, which promote breast self-examination for women over 20 and mammography for women over 40. Peru also pays full coverage for cancer treatment. But 75 percent of its breast cancers are diagnosed at stage 3 or 4, and a recent study found fewer than half of women 40 and older receive annual mammograms.
There, the BHGI’s collaborators (in this case, PATH) focused on a series of impactful steps to improve women’s outcomes: bumping up breast health awareness; training professional midwives and others in clinical breast exams; increasing the use of ultrasound guided fine-needle aspiration for biopsies; developing a patient navigation program to avoid bottlenecks; and strengthening health care systems to support diagnosis at the community level.
“They trained community health workers who could perform clinical breast exams at the local clinics and if they found a lump, they could send them to a local hospital where they had trained people to do ultrasound guided biopsies,” said Duggan. “If they were diagnosed, they were referred to a regional cancer center for surgery and treatment. It was all done locally — taking away the burden of travel and distance.”
Another important outcome of the work in Peru, Anderson said, was that it reinforced the usefulness of breast self-exams and clinical breast exams — both hotly contested in policy circles — in low-resource environments.
“In Peru, we found that if a woman had a prior clinical breast exam, they were twice as likely to come in earlier [when they found a symptom],” he said. “More than 90 percent of the women detected their own cancers and came in for evaluation.”
The BHGI’s methods have been so successful, Anderson said, that similar approaches have been adopted by the National Comprehensive Cancer Network, the American Society of Clinical Oncology and the World Health Organization.
The lessons learned in other countries can be shared here at home, too.
“We’re trying to develop strategies that would also be useful in underserved communities in the U.S.,” said Anderson. “We’re bridging gaps. Overall, we’re doing much better in breast cancer but there’s room for improvement. The biggest gap is getting what we already know works to the communities that are not receiving it.”
As Duggan put it, “We have to be very aware as we move into a brave new world of precision oncology and immunotherapy” that there are still people here in the U.S. being left behind.
“Not everyone has access to all of these amazing novel therapies, especially as not everyone has a home or enough food to feed their children,” she said. “And some women don’t — or can’t — even access mammography. That’s changed a bit with the Affordable Care Act, but not for example among illegal immigrants who are afraid to get health care because they might get deported. If they have a doctor they trust, they could at least get a clinical breast exam.”
Health disparities in cancer care — both here and globally — can seem insurmountable at times, she said, but the Breast Health Global Initiative team is determined to “keep chipping away at things.”
“There’s increasing awareness across many organizations including the National Institutes of Health that something has to be done at home as well as in these low-income countries because there are more and more divisions between people who have and have not,” she said. “Personalized medicine is fabulous, but the small steps are important, too.”
*Funding for the Peru study came from a Susan G. Komen Leadership Grant, the Norwegian Cancer Society, the Norwegian Breast Cancer Society, PATH institutional funds, Susan G. Komen, an anonymous donor and the U.S. National Cancer Institute Center for Global Health.
Diane Mapes is a staff writer at Fred Hutchinson Cancer Research Center. She has written extensively about health issues for NBC News, TODAY, CNN, MSN, Seattle Magazine and other publications. A breast cancer survivor, she blogs at doublewhammied.com and tweets @double_whammied. Email her at firstname.lastname@example.org.