When Philippa Kibuga Decuir founded the Breast Cancer Initiative East Africa (BCIEA) in 2007, her main focus was fighting to break the silence because of the stigma and taboos that surrounded the disease. At the time people were dying due to lack of resources, ignorance and misinformation.
She recalls that at the time, she met women who had mastectomy performed on them by regular doctors who didn’t know much about breast cancer.
"One of the women had the wrong breast removed and the diseased breast was left but she hesitated to remove the other because she didn’t want to die without any breast. That’s how deep the stigma and ignorance affected patients at the time and that’s what convinced me that I needed to do something to change the landscape of breast cancer at the time,” she said.
As a survivor for over 26 years she Kibugu had to Rwanda to help advocate for patients like they had done for her in the U.S., her country of residence.
Looking back, although she has seen incredible strides made, women are still dying, there is stigma still going on, and misinformation in low-income countries, which is seen as lack of awareness.
"My sister who died of breast cancer in 1987, again because of lack of services, lack of information and by the time we airlifted to London, the cancer had spread all over the body and she died.
The story of my sister and I illustrates the story of high income and lower-income pictures of breast cancer. In the US, out of 10 women diagnosed with breast cancer in the US, seven survive. In Africa out of 10 diagnosed with breast cancer, only two survive,” Kibugu says.
Last month, just she was looking forward to the World Cancer Day, the World Health Organisation and the cancer community announced that they would be responding with renewed urgency to address breast cancer and to respond to the growing cancer burden globally that is straining individuals, communities and health systems.
According to statistics released by the International Agency for Research on Cancer (IARC) in December 2020, breast cancer has now overtaken lung cancer as the world’s mostly commonly-diagnosed cancer.
So on World Cancer Day, WHO hosted the first of a series of consultations in order to establish a new global breast cancer initiative, which will launch later this year.
The collaborative effort between WHO, IARC, and other multi-sectoral partners, will reduce deaths from breast cancer by promoting breast health, improving timely cancer detection and ensuring access to quality care.
"The news was exciting even though it’s bad news. For survivors especially, and those who have seen loved ones succumb, it means the world to us and I challenge everyone to take the fight and we can start seeing change,” Kibugu says.
With this development, Kibugu believes that the beginning of problem solving is the conversation which is why she believes that this is going to make us more aware of the importance of talking about this disease and walking the talk.
"During the timeline of breast cancer, so much research has been done around the world but I wonder why there are no tangible results from the research. Some of the diseases like HIV/AIDS have seen brighter days because of the attention that was given.
There is so much being done in science, education, media but we all need to take notice of what’s going on because when a woman is diagnosed with breast cancer, it affects the family financially and psychologically and it affects her societal contribution which becomes a problem for all of us. This is why I say breast cancer is everybody’s business,” she said.
Activism amid the pandemic
Covid-19 affected BCIEA’s initiatives so badly because most of them are community based though fellowships and training activities.
"We also have patients who depend on us for emotional support and donors who sponsor our events and cater for patients’ bills but human contact and physical events came to a standstill.”
Just when she thought all hope was gone, she came up with the idea of selling loofahs that she saw in her backyard. It became a resource and people started ordering all over the world. Currently they are making loofah soap that she hopes to sell so the organization can sustain their programs.
In August last year, she also launched the "One Breast Cancer Smartphone per Village” which aims at distributing smartphones to help raise awareness on breast cancer in Rwandan communities.