I am very grateful that I recently attended the 2019 San Antonio Breast Cancer Symposium as the first recipient of the Barbara Brenner Breast Cancer Activist. I must acknowledge that the sessions were well packed with eye-opening and insightful presentations from renowned experts who tackled issues from the biology of Breast Cancer to the effectiveness of precision medicine. Quite revealing, thought provoking and at the same time deeply technical in the field. Luckily (for some of us, lay people in the field of medicine/ biology) one of the organizations called Alamo, considered to include side workshops that I personally found very useful to properly grasp most of the technical presentations. The entire symposium was a unique exposure for me to properly contextualize the plight of the majority vulnerable women that I seek to advocate for. Women who just want a better and quality life, more affordable drugs/ treatment with guaranteed and improved efficacy. I met many outstanding people with whom I share common interests. I met many who also use their own personal experiences to advance for change for other women living with and at risk of breast cancer. All the time I was sitting during these fascinating and different perspectives of cancer from patient advocates, researchers and oncologists, a very important and most difficult question kept lingering in my mind; what do all these brilliant research findings and presentations amount to? Should they not ultimately result in better life for the majority vulnerable girls and women that I have witnessed suffering in silence in some remote rural districts from where I come from, such as Mchinji in Malawi?
From my own personal experience with, and advocacy work in, breast cancer, I became convinced that I knew a lot more than an average person about cancer and particularly about breast cancer. I have undergone two diagnoses at a young age of 32 and 37 respectively. I recall after my first diagnosis, before embarking on a seven-month long treatment involving surgery (mastectomy), chemotherapy and radiation in a far-away country – because my country lacks complete treatment of breast cancer – my mother had arranged for me to meet two elderly breast cancer survivors. These two women helped me tremendously to understand many things about the diagnosis and treatment options available outside Malawi. They shared and encouraged me with their individual experiences hoping that everything would work out well for me as it did for them. The pep talk worked wonders for me, as I was greatly inspired to put on my boxing gloves and was mentally, physically and emotionally charged to fight on.
I must say, this was one of the reasons that I chose to become a breast cancer advocate – to encourage others as they face their own fiercest battles with breast cancer in their lives. For me, I find great fulfillment in encouraging and educating others in the hopes that they also build a positive attitude in the midst of a difficult and life threatening situation. I empathize with the so many vulnerable people who lack the right information and knowledge, more so advocating for those that cannot access or afford proper treatment and support with regards to breast cancer. Hence, with that in mind, I founded two organizations, Think Pink in Malawi and Hope for Cancer Foundation, in October 2014 and October 2015 respectively, as platforms to champion awareness, encourage early testing and advocate for availability and access to affordable and better treatment of breast cancer.
Fast forward to my treatment, I believe I had a successful treatment. I say “I believe” because I am not very sure if it was really “successful” because the cancer recurred 4.5 years later. So, I doubt if it ever left at all in the first place. Anyway, that’s when I learnt of a new word “Metastasis” and also started to get interested in the discourse about drug/ treatment efficacy.
Well, I thought I knew all there was to know about breast cancer. However, my time at the symposium proved otherwise, I was wrong! I had very little knowledge on the extent to which breast cancer research, advocacy, the overall complexities and politics around it had escalated to. From the first Presentations on Molecular Biology, development of therapeutics in Metastases and immunotherapy to the last session on Toxicity, Tolerability & Cost, I was so enthused with the multitude of new and emerging literature shared on the subject matter of breast cancer. I sat in all the sessions reflecting on how these valuable lessons and information could be translated and simplified for easy understanding by the people in the remote rural areas such as Mchinji District in Malawi. I sat there thinking of how different stakeholders need to come together and understand the holistic context of breast cancer. The duty bearers, rights holders (citizens and activists/ lobby groups), service providers, pharmaceuticals and government agencies among others should all join efforts with defined roles to address this plight of breast cancer.
I should admit that I came out of the 2019 San Antonio Breast Cancer Symposium with so much take home action points and hence so much to be accomplished. What makes it more tasking is the complex politics surrounding the fight against breast cancer. For instance, efficacy of drugs and the overall cancer treatment vis-à-vis the huge investment that goes into research and studies! Is it value for money? Is it really worth it? Are we really making the needful progress towards eradicating breast cancer? Still my lingering question remains, are all the research studies and huge investment in organisation of high-level stakeholder meetings such as the 2019 SABCS really going to benefit those majority vulnerable people down in the remotest parts of the world as in my country, Malawi? Are we really making progress towards making treatment both affordable and accessible to those vulnerable people out there? If you ask me I would say NO, simply because there is nothing big to show for considering the amount of resources that have been poured and continue to be poured into finding a cure. It is not easy to understand how breast cancer mortality rates world over continue to soar and yet the researchers keep talking of breakthrough drugs and treatments? What break through then if ultimately, the much needed treatment/ drugs are not affordable and accessible to the majority people?
On a very sad note, whilst at the Symposium, I received news that I had lost a very dear and close friend to breast cancer. She was only 36 and had been fighting to live since 2015, when she was first diagnosed. She had been receiving treatment in the United Kingdom and of course, the assumption would be that it must have been better treatment than the one she would have received in Malawi. Yet, I felt the drugs and treatment she was receiving still failed her. I strongly feel that we are still far behind in finding a cure, because even drug efficacy remains poor albeit huge costs of treatment. I believe there are many ways to wellness, and that it could be the best time to create a bigger community of practice with more actors and players. We should have more people involved, more people aware of how to live healthy lifestyles and early detection and maximizing the already existing/ alternative treatment mechanisms whilst removing and exposing industries that contribute to the prevalence of breast cancer in this world. I am inspired to carry on Barbara’s legacy of fearless truth-telling on behalf of all women living with and at the risk of breast cancer.
Lilongwe, Malawi