The Good Fight

Fighting Cancer In A Country Without A Word For It

Philippa Kibugu-Decuir aims to prevent breast cancer deaths in East Africa using a survivor’s most powerful weapon: knowledge.

Teaching is, and always has been, Philippa Kibugu-Decuir’s calling: from the time she was a little girl giving lessons to her playmates, to her combined 28 years teaching English and Special Education in Houston, TX.

It’s fitting, then, that the motto that steers the efforts of the nonprofit organization she founded, Breast Cancer Initiative East Africa (BCIEA), is “Knowledge Is Power.”

“Knowledge liberates people from ignorance, poverty, and disease,” Kibugu-Decuir says. “Learning is a privilege in Africa, the only way out of poverty. Teachers are highly respected.”

Operating in both the U.S. and Rwanda, BCIEA’s mission is to improve and save the lives of low-income women in East Africa by providing access to information about breast cancer prevention, detection, diagnosis, and treatment. By conducting awareness campaigns and training local breast cancer survivors and volunteers to educate their neighbors, BCIEA combats misinformation and increases breast cancer awareness one person at a time, one village at a time.

Philippa Kigubu-Decuir, founder of the Breast Cancer Initiative East Africa,

Kibugu-Decuir has strong personal ties to central East Africa. Born in Rwanda, she was raised and educated in Uganda. Her two children were born in Kenya. Much of her extended family lives in Tanzania. Such close-knit ties to such a vast region have influenced Kibugu-Decuir’s approach.

“Initially I wanted to start very small,” she says, “but things changed when I realized that the magnitude of my message could not be limited. I could not deny any of them a chance to hear life-saving messages about reducing their risk of breast cancer.”

Kibugu-Decuir launched BCIEA in 2008 using Rwanda as an incubator to develop her strategy and programs, with plans to replicate her successes in neighboring countries.

Even with a focus on a single country, however, disseminating accurate breast cancer information in the region has proven a steep uphill battle.

A Foe Without A Name

Since the 1980s, breast cancer awareness as a health and social advocacy movement has become such an ingrained part of the collective American mindset that a basic understanding of and about breast cancer is almost assumed as a given. The absence of breast cancer knowledge that preceded this decades’ old push in the U.S., however, still exists in much of East African culture.

Thus, when we talk about the need for breast cancer awareness in East Africa, Kibugu-Decuir says, we’re talking about a medical and social issue steeped in “ignorance, misinformation, myths, silence, and stigma.”

We’re talking about a medical and social issue steeped in ignorance, misinformation, myths, silence, and stigma.

In Rwanda, for example which she says is indicative of the larger East African region breast cancer was initially viewed as a disease exclusive to rich white people. Lumps and breast anomalies in black women were rather viewed as a curse, deserving of fear, shame, guilt, and ostracization.

Women who’ve had breasts removed through mastectomy (the standard treatment in Rwanda) may be considered insufficient, incomplete, or “damaged goods.” Kibugu-Decuir points to a regional curse indicative of the social and cultural stigma associated with breast cancer: “May you have your mother’s breasts cut off.”

The problem is often compounded by a belief that talking about a subject can bring it upon oneself. Rwandan women have told Kibugu-Decuir, “You can’t talk about [breast cancer]. If you talk about it, it’s going to be contagious. People will shun you.”

In fact, Kibugu-Decuir notes, Rwanda’s national language, Kinyarwanda, has no word for cancer.

These issues of avoidance and misinformation, coupled with widespread poverty, illiteracy, and severely limited or no access to screening and cancer care services like mammography, radiation, and chemotherapy, contribute to incorrect and delayed diagnoses. Many women in Rwanda and East Africa don’t know they have breast cancer until the disease has reached an advanced stage.

Rwanda’s national language, Kinyarwanda, has no word for cancer.

With early detection and treatment, however, many of these deaths might be prevented. “We are working hard to convince Rwandans and East Africans that breast cancer is not a death sentence, does not discriminate, knows no boundaries, and that men, too, can have it,” Kibugu-Decuir says.

So how do you get people talking about an issue just the mention of which may be considered fatal?

The first step, she says, is to earn people’s trust. In this, Kibugu-Decuir has a special advantage. Not only does she speak the language and have ties to the region: she also has strong personal ties to the breast cancer experience herself.

Kibugu-Decuir’s history with breast cancer, however, doesn’t actually begin with her own diagnosis. It begins with that of her eldest sister, Mabel.

In East Africa, breast cancer is often viewed as either a curse, or an affliction that only effects white women. Neither is true.

A Difference in Diagnoses

Mabel was rarely sick, Kibugu-Decuir says, and, like her contemporaries, knew little about breast cancer. Unfortunately neither did her doctors.

When Mabel fell ill in the mid-1980s, there were no cancer care services or support groups in the Democratic Republic of the Congo’s capital city of Lubumbashi where she lived. There were no early detection screenings. There were, in fact, no oncologists. To the medical establishment at the time, Mabel’s illness was a mystery.

By the time she was airlifted to London for surgery, the cancer had already spread to her liver. Mabel died of metastatic breast cancer in 1986.

“It’s been 31 years since Mabel died, yet it’s like yesterday,” Kibugu-Decuir says. “Her death left us with an incredible, gnawing pain. It would end up being the catalyst for starting BCIEA.”

Philippa knitting.

Mabel’s experience is typical of many East African patients still. By comparison, Kibugu-Decuir says, her own diagnosis and treatment in the U.S. eight years later “was a breeze.”

“Unlike my sister, by the time I got my diagnosis in 1994, I had excellent health insurance,” she says. “I was an informed patient. My cancer was detected early. I had an excellent team of doctors and a strong support system that included my family, church, and members of a breast cancer support group.”

Kibugu-Decuir underwent a double mastectomy with reconstruction and chemotherapy. For all the resulting side effects including pain, hair loss, nausea, and despair she recognized the advantages of her situation. Unlike her sister, Kibugu-Decuir had options. She had hope.

The dichotomy between her experience and her sister’s left Kibugu-Decuir with two nagging questions. Would Mabel still be alive if she had lived in the U.S.? Should where someone lives determine if they live or die?

Spreading the Word

Disturbed by these questions, Kibugu-Decuir determined to do something to disentangle cancer survival from the sheer luck of geography. To raise money for a fact-finding mission to Rwanda in 2007, she sold off some of her clothes at a silent auction held in her living room.

Despite a population of more than 10 million at the time, Rwanda had zero oncologists, or any form of cancer screening, treatment, or palliative care, Kibugu-Decuir says. Of 10 doctors she surveyed on her fact-finding trip, only two had ever even heard of breast cancer. She also met a group of 27 women whose “mind-boggling” cancer experiences encapsulated the need for action.

Each of the women had had at least one breast removed by the equivalent of a family doctor or general practitioner. None had received pain medication or post-surgery follow-up care. One woman’s doctor had removed the wrong breast, but she was unwilling to undergo a second surgery, preferring the inevitability of death with one breast intact.

Kibugu-Decuir describes these women as desolate, frail, and frightened. They held no hope for survival. Rather, they told her, “We’re just waiting to see who will go first.”

If women couldn’t access the information needed to keep them alive, then the information needed to go to them.

Kibugu-Decuir’s instincts as an educator kicked in. If women couldn’t access the information needed to keep them alive, then the information needed to go to them. Kibugu-Decuir and therefore BCIEA had to take the message to the people.

Kibugu-Decuir trained the 27 women to become BCIEA’s first village ambassadors, carrying up-to-date breast cancer information and their experiences to their communities through civic events, church and professional groups, youth programs, and one-on-one’s. By sharing information through already trusted members of these communities, BCIEA facilitates conversation, spreading awareness and helping combat misperceptions that would otherwise silence discussions before they’d ever begun.

“When you are willing to give a bit of yourself, people listen,” Kibugu-Decuir says, “so I talk about myself and my sister. [Mabel] represents them, and they empathize with me, and I can gain their trust. I use the same method to train breast cancer survivors. Once they’re out of the closet, they become our ambassadors among their own people.”

Rwanda has made notable strides in cancer care in recent years. The country now has two oncologists and has opened its first national referral facility in northern Rwanda.

Once [breast cancer survivors are] out of the closet, they become our ambassadors…

But with so little access and information still available to most of the population and the ability to go abroad for treatment restricted to those who can afford it, combating breast cancer for much of the country’s poor rural and urban women is left to the women themselves.

“BCIEA’s goal is to place the Rwandan woman at the steering wheel as the key agent of change,” Kibugu-Decuir says. In the absence of mammography, for example, women are trained how to conduct breast self-exams, empowering them with preventative knowledge for themselves and future generations.

By 2016, 24 of the original 27 village ambassadors had died. But thanks in large part to their efforts, nearly 9000 people had been reached with potentially life-saving information.

Kigubu-Decuir’s work advocating for breast cancer victims has gained her friends around the world.

BCIEA has 17 ambassadors currently active, and Kibugu-Decuir has begun to expand the organization’s reach by way of an app that provides basic breast cancer detection and treatment information.

She is also working to raise enough money to provide one smartphone loaded with the app to each of 250 Rwandan villages. She estimates 250 ambassadors each equipped with a smartphone have the potential to reach up to 200,000 people.

“If I can get support for [the One Smartphone Per Village program], we can exponentially cover the whole country with awareness,” Kibugu-Decuir says. The program also lays the groundwork for expansion into Uganda, Kenya, and Tanzania.

Successes Big and Small

While BCIEA’s primary focus is to increase survival through early detection, the organization also works to support women during and after diagnosis. In this way, Kibugu-Decuir’s education efforts turn from the preventative to the practical.

This past October, for example, Kibugu-Decuir worked with Barbara Demorest (whom Folks featured last summer) to bring Demorest and volunteers from Demorest’s organization, Knitted Knockers, to Rwanda to teach 30 local women how to knit yarn-based breast prosthetics.

As part of the trip, “[Kibugu-Decuir] organized events, connected with key hospital personnel, met with [Rwanda’s] Minister of Health, and worked tirelessly to accomplish her mission,” Demorest says. “Philippa’s heart and focused purpose of spreading breast cancer awareness to the women of East Africa is so inspiring and contagious. The country is fortunate to have such a great advocate for their women.”

Although Kibugu-Decuir emphasizes that she’s “a teacher, not a politician,” BCIEA collaborates closely on activities and events with Rwanda’s Ministry of Health and Non-Communicable Diseases Department. She has also met with Parliamentarians and Rwanda’s First Lady.

Members of Breast Cancer Initiative East Africa and Knitted Knockers have teamed up to make knit prosthetics for women who have had mastectomies.

Kibugu-Decuir would love to live to see a cure for breast cancer and hopes to see the government expand its infrastructure further to help turn more diagnoses in Rwanda into survival stories like her own. She was declared cancer-free five years after her diagnosis and has since celebrated what she calls her 22nd “survisary.”

But she recognizes that success can also result by simply shining a light on the problem. As an example, she cites a crying woman who ran up to her last year, telling her, “You saved my life.”

“I said, ‘No, I didn’t,’” Kibugu-Decuir relates. “‘Actually, yes, you did,’ she said.”

In 2008, the crying woman had been diagnosed with breast cancer but had been denied a visa to go abroad for surgery: the government refused to grant medical visas to anyone who could be treated inside Rwanda. Barred from leaving the country, the woman resigned herself to die.

Then she came across an article Kibugu-Decuir had written that same year, urging Rwanda’s government to establish a policy to address the country’s need for cancer care services and clearly articulating the absence of available treatment options.

That article became the key the woman needed to open the door to treatment. The woman returned to the embassy with Kibugu-Decuir’s article in-hand, Kibugu-Decuir says, “and they gave her a visa.”

“Even if I don’t do any more, I’ve touched one life,” she says. “My sister is smiling up there, wherever she is. That’s the kind of little thing that makes what you do worthwhile.”