Is Breast Cancer everybody's business?

Kermit Williams Jr. | 4/5/2019, 2:39 p.m. | Updated on 4/5/2019, 2:39 p.m.

Today we’d like to introduce you to Philippa Kibugu Decuir.

So, before we jump into specific questions about the business, why don’t you give us some details about you and your story.

My fight against breast cancer began in 1986 when my sister, Mabel was airlifted to a London hospital for an expensive surgery that could not save her dear life–she died of metastatic breast cancer. My sister’s death changed my life in a way that is impossible to comprehend–as I sat on that British Airways in the passenger cabin with my sister’s body in the luggage for more than 20 hours. I knew my life would never be the same again. When in 1994, I received my own breast cancer diagnosis, unlike my sister, I was an informed patient who without any doubt was shaken to the core by this news that no one ever wants to hear. Yet again, unlike my sister, the world renown MD Anderson Cancer Center was literary in my backyard. The state of the art diagnosis, treatment, care, and support was a given for me. On top of that, my cancer was detected at an early treatable stage because I knew the importance of Early Detection Practices. Unlike my sister, I survived and although relieved and immensely thankful to be alive, with a new lease on my life, I was perturbed by two questions that would not go away: Would my sister be alive if she lived in the USA? Should, where you live determine if you live or die? Finding answers to these questions became and remains my challenge–I had to do something about this!

Mabel represents so many women in Africa: women who die because they lack access to life-saving information and sustainable diagnosis, treatment, care, and support. I see health as a human right and if that is true, every breast cancer regardless where she lives, deserves the same chance I had. The struggle to answer the two questions caused serious labor pains that birthed Breast Cancer Initiative East Africa (BCIEA) Inc.

BCIEA, while illustrating the big divide between high and low-income countries as far as breast cancer is concerned, strongly believes that Knowledge is Power and is committed to fighting breast cancer through awareness, education, empowerment, support, and research. In 2008, BCIEA was registered in Texas as 501 c3 Nonprofit and the following year, it was registered in Kigali, Rwanda. We started with 27 Rwandan women who had undergone mastectomy with no follow-up and no knowledge about their disease. To date, we have impacted over 10,000 women, men and youth with basic breast health: signs and symptoms risks factors and how to reduce these risks, the importance of early detection and help-seeking behaviors. By providing accurate health information, we are able to dispel fear, myths, stigma, taboos, and misconceptions that, should breast cancer and are associated with late-stage presentations of breast cancer. BCIEA started as a figment of the imagination, but today the program has Nine Components: 1. Community Education Outreach, 2. One Smartphone per Village, 3. Creatively Pink Youth Club, 4. Wellness House, 5. Knitted Knockers Project, 6. Breast Cancer Survivors Support Group, 7. Wellness Garden, 8. Children’s Education Fund, 9. Research Team. BCIEA is totally dependent on God’s grace through donations and volunteer work and the spirit that never gives up. This coming October, we will celebrate ten years of service and bringing hope to Rwanda more information and how you can get involved can be found on our web site: http://breastcancerafrica.org/

I am immensely grateful for the love, prayers, and support of my incredible family, awesome friends and amazing supporters and well-wishers, I could not have done this alone, we are all in this together and together, we are strong.

Overall, has it been relatively smooth? If not, what were some of the struggles along the way?

It has been an uphill journey considering that I have to live in two worlds, absence from my family is not easy and the hardships and expenses involved with no funding. To raise money for a fact-finding mission to Rwanda, I sold off some of my traditional attire at a silence auction held in my living room.

I was compelled to retire early from my teaching job of 28 years because I couldn’t manage the demands and stress of two full-time jobs, it was tough, but I have never looked back, seeing one woman smile when her doctor tells her she is no longer sick, means more than I can explain.

When we talk about breast cancer awareness in Rwanda, we are talking about a medical, social and economic disparities steeped in ignorance, misinformation, myths, silence and stigma; “Breast cancer is for the rich,” “when you talk about it, you will get it,” “It’s curse” “you better stay away from her, you’ll catch it” “When you talk about you bring on” These are few statements that reveal how difficult it was and is to break through and when this is coupled with illiteracy, poverty and very limited cancer services–the picture is dismal. It is no wonder that most breast cases are late stages 67% and 5-year survival rates 43% compared to 90% in USA., although incidence in Rwanda is much lower than the USA.

Rwanda is making strides and our call to arms: IKUNDE =Love yourself, IMENYE = Know yourself, ISUZUMISHE=Get Checked is spreading and opening conversation and breaking the silence.

Our pitch and hashtag: #breastcanceriseverybodysbusiness is being accepted and supported. The government is building cancer service infrastructure and training specialized medical teams and the future looks bright.

What should we know about your foundation? What do you guys do best? What sets you apart from the competition?

BCIEA is an advocacy/awareness/education grassroots nonprofit committed to reach out, touch, teach, change and save lives, we believe that everything begins on an individual level: We empower and inspire our audience with our mantra:

IKUNDE = Love yourself, IMENYE =Know yourself, ISUZUMISHE = Get Checked, although this was designed for our East African population, it bares universal application: when you love yourself, you value your life and health and can also love others. When you know your body, you can notice any changes so that you can seek help promptly – that is practicing Early Detection the bedrock of defeating cancer.

Everything we do is purposed to inform, motivate, engage to bring about the desired outcome-specifically we strive to reduce the impact of cancer for ourselves, for our loved ones, the community and the world at large.

Breast Cancer symbol is Pink Ribbon and pink has always been my favorite color, so I decided to completely go pink after my diagnosis. I am known as Miss Pink, Pink Lady, Auntie Pink, Pink Warrior, there is no single day I don’t have pink on me. During my travels, it is a conversation starter, I was recently on KLM Amsterdam-Kigali and distributed 156 pink ribbons as my first-time on-board international breast cancer awareness treat for the passengers, as a result, three male passengers learned that men can get breast cancer too. I am always on duty!

I am proud to be celebrating ten years of service and bringing hope to Rwanda as the first breast cancer advocacy organization in the country: August 1, 2008, I wrote an article in News Times Rwanda, the national newspaper urging the government to take action and change the dire status of cancer in the country.

Today, Rwanda has Cancer Policy, 9 oncologists, 12 pathologists, a brand new Oncology Center with 2 new Linear Accelerators and other imaging equipment. Breast cancer is now on the priority list. Still much needs to be done, but at least today we have the political Will, there is Hope in the country and momentum for change.

What is “success” or “successful” for you?

Success is doing what I am passionate about and impacting others and adding value to their lives.

Contact Info:

Website: http://breastcancer africa.org

Phone: 2818186241

Email: bciafrica@gmail.com