2013 African Breast and Cervical Cancer Advocacy, Education and Outreach Summit Uganda

My experience as a breast cancer survivor over the past four years has led me to the most interesting scholarship experiences, but in September I was invited to attend and speak at the 2013 African Breast and Cervical Cancer Advocacy, Education and Outreach Summit in Kampala, Uganda.  This would be the first conference of it’s kind in Africa and for me, the opportunity to make an impact.  Earlier in the year while lobbying at a National level with advocates from Nigeria and Ibadan, I learned how African countries lacked the infrastructure to safely support newly diagnosed women through therapy.  Uganda continues to lead East Africa with its Cancer Center and 11 Medical Oncologists thanks to the support of the Fred Hutchinson Cancer Research Center and the University of Washington.  The opportunity to meet the Ministers of Health, NGOs, advocates, doctors, researchers, volunteers and survivors enticed me to attend the Summit in addition to presenting my idea on a program called Survivors in Science.  I shared information on scholarships and opportunities for those wanting to bridge information from science to the survivors themselves.  The conference was created in partnership with the Breast Cancer Initiative East Africa, which was founded here in Houston by Philippa Kibugu-Decuir, and the local Uganda Women’s Cancer Support Organization.

Then, just two weeks before the summit, I received a ticket for my flight to Uganda and only then, did I get all the required vaccinations and malaria medications needed to travel!

Flying to Uganda with two other survivors Philippa and Joyace Ussin, an oncology nurse from MD Anderson took a total of almost 36 hours but it was all worth it when the Summit finally came together and started.  From a secure hotel the conference room was filled with a total of 75 in attendance including local Ministers of Health, doctors, advisors, researchers, survivors, advocates and volunteers representing 8 different countries all under the direction of Dr. Julie Gralow, Endowed Professor in Breast Cancer, Professor, Department of Medicine, Division of Medical Oncology and Adjunct Professor, Department of Global Health from the Fred Hutchinson Cancer Center and the University of Washington.  In 2003, she launched Women’s Empowerment Cancer Advocacy Network or WE CAN to connect countries to improve women’s health through education, advocacy, sharing and reaching out. The 501(c)3 nonprofit specifically works to empower areas of limited resources with education, networking and the inspiration needed to overcome limitations to access to care.  If advocates can’t get the resources they need through public channels, then she helps them work privately to bring in resources to screen women, referring any suspicious cases through available health channels.

The conference opened with a powerful song about survivorship written and sang by a survivor, before a panel of Goodwill messages moderated by the Uganda Cancer Society.  Drs. From local NGO’s including Dr. Kingsley Ndoh MPH from Nigeria  spoke about the opportunities available for increased sustainability for cancer health care including the role of government in prevention.  Dr. Jo Anne Zujewski from the National Cancer Institute chaired a panel on Breast Cancer Education before Dr. Gralow chaired the session on Cervical Cancer education.  The day wrapped up with sessions on Palliative Care and Successful Mobilization of Policy Makers to support Breast and Cervical Prevention by the Parliament of Uganda.  Day two was led by LIVESTRONG with Advocacy and Stigma Training, which was highly beneficial to the current culture of progress within East Africa.  The session included defining mission goals, strategies and tactics needed to start to move the needle on social stigmas.  Currently the cancer stigma includes being shunned by the entire family and being sent to the hospital with all of their belongings thinking they will surely die and never return.  Day Three included an activity that separated the entire group between those pretending to be diagnosed with cancer and those told they had normal results.  I had normal results.  Discussion took place as to how this felt among the group and at one point a normal patient was then misdiagnosed and asked to join the group diagnosed with cancer.  She shared her feelings of confusion and denial wanting a second opinion.  The activity initially made me mad until a nurse helped me see that this finally brings home the news of being diagnosed to those that can make a difference for so many others.  Cancer doesn’t care about the patient’s color or political persuasion and the more tolerance we have globally to work together towards a better understanding of the disease then the more people we can get access to care creating survivor advocates like myself.

After long breaks that were termed “Africa Time” because they included lots of networking, my 1:15pm presentation became a reality an hour later.  Sharing my experiences with identifying, applying and winning scholarships that promoted education and knowledge for local survivors was well received and as it turned out, it was only well received by those countries that had survivors.

I knew I wasn’t in the states anymore when Dr. Claudia approached me with sadness and excitement and told me that her country of Madagascar does not have survivors.  The words didn’t compute in my head until she said that some of the Madagasy, if they have the money, fly out of the country for their Cancer treatment and most don’t return.  By the end of the conference, it was clear that making a difference by coming together needed to happen in Madagascar and a date has already been set for next year on April 6, 2014.  She plans to host a conference on Cancer Education and Advocacy and promises to find survivors so I can train them on how to become educated patient advocates!  Now that’s what I call team work.  Even after returning to the States, the networking continues as I continue to make a difference from Houston.  However, I need to plan a sight seeing trip next time I visit Africa because this trip was a nonstop mission trip.