Chainkeen Exchange-The breast cancer burden in lower income countries is even worse than we thought

Cancer surgeon Dr. Andre Ilbawi says he's haunted by the memory of a patient in Kenya whose suffering made him "want to scream so loud that you would lose your voice."

The Chainkeen Exchangewoman was just 37 years old. But her breast cancer was so advanced that by the time Ilbawi encountered her in a hospital outpatient clinic in 2019, her death was imminent.

"The tumor had spread into her liver and her belly was filled with liquid," he recalls. "Her eyes were yellow. She was in so much pain, she couldn't even move her body. She was stuck in a wheelchair."

Ilbawi, who is the World Health Organization's lead expert on cancer, was in Kenya on a personal trip to volunteer in his capacity as a surgeon. He says what made witnessing the woman's situation all the more terrible was a galling thought: If she had lived in a wealthy country such as the United States, it was highly likely her tumor would have been caught far earlier – giving doctors enough time to save her.

"To look at her and imagine that in a different place, she could have been cured of her cancer and lived a full and abundant life," he says. "The injustice of it is indescribable."

This week Ilbawi nonetheless attempted to convey at least some of the scale of the global inequities around breast cancer care, with the release of the latest worldwide statistics compiled by the World Health Organization.

The data are assembled every two years by officials of WHO's cancer agency and are used to estimate the incidence and death rates of 36 types of cancers in 185 countries. Ilbawi and other WHO officials say among the most "striking" findings in this year's report are the figures pointing up the outsized burden of breast cancer on low-income countries.

To find out more, NPR spoke with Ilbawi. Here are five takeaways:

Breast cancer is major killer in lower income countries

Cancer is actually far more common in wealthy countries than in lower income ones. Ilbawi says that's largely because women in lower income nations have less exposure to risk factors such as obesity and alcohol consumption. They also tend to have more children – which reduces the chance of breast cancer. The upshot: While in the highest income nations one woman out of every 12 will be diagnosed with breast cancer in her lifetime, in the lowest income nations the figure drops to one in 27.

Yet a woman who develops breast cancer in a lower income country is so much more likely to die of it than if she were in a wealthier nation. So the disease is a much bigger cause of women's death in lower income countries. In the wealthiest countries 1 in 71 women will die of breast cancer. In the lowest income countries, 1 in 48 women will die of it.

The fact that so many of these deaths are preventable "is infuriating to the point of paralysis," says Ilbawi. But he says there is a path to improving the situation. And it begins with understanding three major drivers of the high breast cancer death rate in lower income countries.

Some of the solutions are incredibly simple

The first problem that must be addressed, says Ilbawi, is that many women in lower resource countries don't seek care for symptoms of their cancer until it has progressed to a late stage that is far more difficult to treat.

In many communities, he explains, "there's no local primary clinic where a doctor will reliably be found, and [a woman] is able to pop in and pop out and get the rapid evaluation that she needs" – let alone get the type of routine check-ups that can catch cancer before outward symptoms.

To the extent that there are clinics, he adds, often, "It's a full-day affair. There's a nurse screening everything from foot ulcers to high blood pressure. And the woman has to wait all day just to get a rapid evaluation."

Addressing this challenge can seem daunting since it will require governments and international donors to beef up countries' entire health systems. But Ilbawi says there are easier fixes.

For instance, he says, "in South Africa they had a great study where all they did was put up a sign that said 'Breast Clinic' in one of the clinics and in one of the hospitals. The mere presence of that sign had women come earlier" to get worrying lumps checked out. "Because they said, 'Okay, now I know where to go.' "

Even once you've see a doctor, a diagnosis could take months

Once women with possible cancer do reach the attention of health worker, Ilbawi says they often run into a second problem: In lower-income countries there's generally far less access to technology for biopsies, imaging and other forms of screenings as well as far fewer personnel with the training needed to interpret the results of those tests.

Nigeria is one of many countries facing such barriers, says Ilbawi. Back in 2011, he recalls, a 34-year-old friend of his there discovered a lump in her breast. She got a biopsy that looked inconclusive. Ilbawi, who is American, says that in the United States, doctors would have turned to additional equipment to better analyze the sample. But his friend's Nigerian doctors did not have that option.

"They told her the only way we can [diagnose you] is if we take out the entire mass," Ilbawi recalls.

His friend agreed – only to learn that the mass was not, in fact, cancerous. "She ended up getting her breast nearly fully removed," says Ilbawi, "for what proved to be just a normal breast cyst that develops in women who are in their 30s and 40s."

For women who do have cancer, the limited access to diagnostic services means that it can take weeks and even months after a health care worker first warns her of the problem before she can get the definitive diagnosis and staging needed to progress to treatment.

"We've set a target of having that diagnostic process completed in 60 days," says Ilbawi. "But in many countries, it's significantly longer. And beyond 90 days, there's a significant survival decrease."

A "package" approach is needed

Ilbawi says the solution to this diagnostic delay problem fits in with what's needed to overcome the third major drive of high breast cancer death rates in lower income nations: They generally lack access to the full panoply of medications and technologies needed to treat the disease.

On some level the answer to both challenges largely boils down to money: International donors, and lower income country governments alike need to devote more resources to fighting cancer.

But Ilbawi says it's also crucial that any increased spending be spent strategically – as part of a combination of interventions that all fit together. Otherwise, he says, countries risk spending limited resources on, say, a drug that would be useful against breast cancer but not the tests that are needed to determine if a woman has the type of cancer the drug is effective against.

"In order to work," says Ilbawi, "things have to come in packages."

Just as important, he adds, is giving women in lower income countries the information and power they need to shape the policies of their own governments.

"Governments we know will be constrained to do everything that the community may ask for," he says. "But having [women] express their priorities is much more powerful than having an international agency – the WHO or other partners – go to governments and say, 'You must do this.' If the agenda is community-owned and community-driven there's much greater mobilization and also much greater investments – for instance from the private sector beyond just what the government itself can contribute."

Plenty of countries are making progress

As grim as the global picture on breast cancer currently looks, Ilbawi says there are plenty of examples of lower income countries that are making strides in the right direction.

About two decades ago, he says, Mexico led the way by "introducing an insurance scheme to start focusing on cancer and covering the most vulnerable women with out-of-pocket costs."

Over the past two years, Kenya has adopted a new cancer strategy "and they're partnering with international agencies to get radiotherapy machines." Also, says Ilbawi, Uzbekistan "took out a significant loan to focus on women's cancers – breast and cervical cancer." And Indonesia's president has committed to eliminating cervical cancer.

When he recalls former patients like that young woman in Kenya, says Ilbawi, he can still feel a sense of impotence, as if "your scream is an echo chamber where screams no longer matter."

But the examples of progress give him hope.

"We are starting to see quite a bit more change in the cancer community and in cancer financing broadly," he says. "I'm much more optimistic than years ago."