COMMUNITY VIEWS ON BREAST CANCER AND BREAST TISSUE DONATION Rose Ayikukwei ( MPH, Ph.D. ) Senior Technical Advisor, HIV Prevention Elizabeth Glaser Pediatric AIDS Foundation

Knowledge on breast cancer Inadequate knowledge  Witchcraft  Curse Some believed that breasts do not get sick Some thought it was genetic Most do not come forward or seek care when they notice that their breasts are sick.

Stigma & discrimination Some are abandoned by family members and shunned by the community once diagnosed Some family members have been very supportive

Myths & Misconceptions Breasts cannot get sick Too much milk in the breast causes lumps leading to breast diseases Infidelity causes breast cancer Breast suckled on by men are likely to get sick Sex at an early age with different men causes breast cancer Girls who start to grow breasts early are more likely to get breast cancer

Health seeking behaviors Lack of knowledge on how to perform breast self exams Most ignore early symptoms of breast cancer Most are unable to reach health facilities due to poverty Most are too busy doing other things and do not seek care For those who die, post mortems are not done due to lack of money therefore the real cause of death is not known Some avoid surgery because they believe that after surgery the patient will die

Health facilities Most facilities did not have diagnostic equipment Health professionals not trained to diagnose breast cancer Lack of medication in the in most health facilities Lack of general information on the management of Breast cancer in health facilities

Knowledge on biomedical research Some had prior experience with biomedical research especially in regard to HIV Some said that research is used to investigate the causes of a disease or other public health problems Some said that research can be used to educate people

Participation in a breast cancer research Some showed willingness to participate while others were hesitate For those who showed willingness they requested that the following issues be adequately addressed Process of research Adequate education and advocacy Diagnostic procedures Confidentiality of the information Appreciation to donors Tissue exportation & storage exportation

Sample questions from participants We are just beginning to learn about this disease, what information do you have on CA breast? What are the causes of breast cancer? Does cancer affect the breast only? Does donation of breast tissue prevent one from getting cancer What happens to me if I discover that I have cancer during the donation process? What are the causes of cervical cancer? What are the symptoms of cervical cancer? Will we be screened before donating?

Sample questions from participants Will you only screen for breast cancer or will you do cervical cancer too? Why should the samples be taken to America and not Kenyatta National Hospital? How long will it take for me to know my results after you take the sample from Kenya? If my tissue will help find the cure what will I get in return? What ages are you looking at?

Lesson learnt limited understanding on bio banking and intentions of bio banks that are based in North America, Europe and South Africa The country does not have clear bio banking policies. However, there is growing consensus that investigators wanting to store tissue for future studies should work to ensure that the tissue is stored in the country of origin

Lesson Learnt I learnt that to go around the quagmire of bio banking and tissue exportation in Kenya is to have a proxy study, because then, one has clearly defined study question and objectives. My greatest lesson, was to discover that my interviews should have started with the professional staff and academic researchers before moving into the general population

Asante Study participants from Langas, Mosoriot, Turbo, Kapsoya & Eldoret Municipality IU Komen Tissue Bank Team Research assistants: Lenny & Josephine