After a deadly encounter with breast cancer which claimed the life of her sister, Philippa Kibugu Decuir is now at the forefront of the fight against the disease. In 2009, she got involved in breast cancer awareness activities and when she came back to Rwanda, she founded Breast Cancer Initiative East Africa Inc (BCIEA) that raises awareness of breast cancer and organises the annual Ulinzi Breast Cancer Walk.
“I lost a sister to metastatic (stage 4) breast cancer which is what is going on here because pain drives the women to go and see the doctor, by then, the disease has spread to other organs.
“Being in the US where everything, including awareness, health needs, infrastructure and doctors, are available, when I compare my survival to my sister’s death, I wonder whether where one lives determines if they die or not. It shouldn’t, there’s something we can all do,” she says.
This motivated her to open the BCIEA Wellness Centre two years ago, to help patients enhance and sustain a healthy lifestyle while improving one’s overall health, completely free of charge.
Located in Kanombe, Kicukiro, the wellness house, also called the Pink House, has become a safe space for women and men battling breast cancer. It is here that patients and survivors gather for meetings, trainings and a monthly breast cancer survivor support group meeting, do refresher courses for members and recruit new members.
Breast cancer survivors meet to do knitted prosthesis for women, talk and listen to each other’s stories, and through this, there is a lot of interruption and psychosocial going on.
Kibugu hopes that soon, families that are caretakers of cancer patients, will be included in the programme because they are also affected.
“They are always left out yet cancer affects them too. Most of my patients, their husbands left because they don’t have the patience or the understanding of being there when the wife is undergoing treatment,” she says.
She also explains that the centre also provides a transitional place for women who come from villages for chemotherapy and are waiting for radiation.
“They get to take a break and spend a night and we try to make them comfortable because that is one of the things that is integral, in taking care of patients,” she says.
The wellness centre has also become a place where people come to get information and will soon grow into an information, help and resource centre.
“Since I came in 2007, Rwanda has made tremendous change, particularly in addressing breast cancer. Years ago, there was silence, myths and taboos around breast cancer, nobody knew about it. Women never talked about it because it is something that affects the private parts of a woman. This is why we need to increase sensitisation,” she says.
In order to sustain the place, they also have a wellness garden, where members grow herbs and spices, for income and food generation and are given seedlings to grow at home.
The interventions done include diet and nutrition, where they are taught about balanced dieting and making salad. They also have a coach who guides them through exercise, behavioural change, making the right choices, which all deal with risk factors of breast cancer.
The centre also has a ‘creatively pink’ programme, for secondary and university students that educates them on the risk factors of breast cancer.
“We want to include the youth because if we can have informed young people, by the time they get to the age where these diseases strike, they will make informed decisions. We can do a lot of prevention by educating them and they also get to become our ambassadors by telling their parents to go for check-up because we have enough mammograms in the districts,” Kibugu says.
As of 2017, BCIEA had directly impacted more than 10,000 people since it was founded. Currently, they are keeping track of the people that they have impacted and hope to include a data collection function, on their smart phone application.