What is BCIEA Inc? BCIEA is a 501 (c), (3), nonprofit, grassroots advocacy organization registered both in the USA and Rwanda with the base office in Houston, Texas. This organization was formed to take the lead in the advancement of breast cancer surveillance and improved survival rates targeting the most neglected population in the low income communities of East Africa. BCIEA was founded in January, 2008 by Philippa Kibugu-Decuir.
In 1986, Philippa lost her beloved sister Mabel to breast cancer. At the time of Mabel’s death, Philippa like many East Africa women knew nothing about breast cancer. Her sister’s death ignited a fire to learn everything about this silent killer since she lived in Houston, Mabel lived in Lubumbashi, Africa. Lessons Learned would become the foundation for her Initiative.
Until 1980s, in America, breast cancer was surrounded by secrecy and shame until prominent and brave women, the First Ladies: Betty Ford and Nancy Reagan and the founder of Susan G Komen, Nancy Brinker, began speaking publicly about the personal impact of this disease. Their shared hope created infectious awareness of breast cancer and made it acceptable to talk about it openly.
At the same time, facts about breast cancer were presented in ways that the public would understand. Public health advocates capitalized on the public mood, played a significant role in engaging consumers when they established guidelines that encouraged women to perform breast self examination, fondly referred to as BSE, have clinical breast examination, CBE and get screening mammogram.
The increased media coverage of breast cancer issues and the founding of the Komen for the Cure in 1983 not to mention the establishment of various programs that educated the public and raised funds all helped engage consumers. Funds raised empowered advocates to produce educational materials in different media to meet the needs of diverse audiences, hold educational forums and workshops and encourage the public to become active in funding of research for the cure.
The public owned the burden of breast cancer and this made political action possible. Breast cancer survivors and advocates joined together and worked to see legislative, regulatory and funding of the National Institute. In 1990s federal funding for breast cancer more than quadrupled as a result of all the concerted efforts. When the business, government and scientific communities were all engaged as partners in advocacy, breast cancer advocacy gained a solid support base.
I believe what I have learned to be responsible for the major breast health strides in America and as of 2013, these strategies are evidence based. As an educator of 24 years who believes that knowledge is power and a passionately pink survivor, I am compelled to attempt to utilize the same approaches with major modifications to suit the audience and/or situations in East Africa.
When in 1994, I received my own diagnosis of invasive ductal stage 1 breast cancer I went through treatment: double mastectomy with reconstruction followed by chemotherapy with all its incredible devastating side effects: hair loss, nausea, mood swings, pains, crying, fatigue, despair, anger, guilt, fear just to name a few. I had a team of excellent doctors, nurses and a support system including my loving family. Seeing all this, a recurring, gnawing question bothered me, “Would Mabel be alive if she lived in America?” Then, came the periodic checkups, three, six months, one year, two, three years then the milestone, five-“you are cancer free!” As I celebrated with my family, quietly, I felt that every breast cancer patient wherever she is deserves what I had, every woman represented by my sister, who did not have a chance, deserves a human right to health. Where one’s home is located should not determine if she lives or dies. Our story, Mabel and I paint a powerful and disturbing picture: USA: sustainable health; East Africa: no access to screening or early detection or treatment or palliative care, no oncologist and no Hope.
WHO predicts that by 2020 more than 1million cancer cases will occur in Sub-Saharan Africa. Breast cancer is the most cancer worldwide and the second leading cause of death among women. 1 out 8 women will be diagnosed with breast cancer in her lifetime. With BCIEA, I embarked on a Journey equipped with lessons learned and my survival experience to find the answer to my gnawing question; to reach out, teach, touch and perhaps save life while giving God the Glory for the gift of Life.