On 13th May 2019, I received an email from the American Society of Clinical Oncology (ASCO) stating that I have been awarded a travel grant to Chicago, USA to attend ASCO annual meeting as a patient advocate. I was happy and delighted that I would have another opportunity to learn about innovations in oncology, share the work of Project PINK BLUE, exchange ideas on our new e-health project, network with friends and be inspired by other cancer patient advocates.
In my conservative estimation, the ASCO meeting was overwhelming. It was very well attended; I experienced human traffic severally at McCormick Place - ASCO meeting’s venue. The throng of people was so massive that I thought that I was in Idumota, Lagos. The sessions were promising and interesting, and I wanted to attend every session; unfortunately, I could only be in one place at a time. There were two sessions that resonated with my work and were taking place at the same time. To attend both, I worked out a strategy. I spent 25mins in one session and walked 5 minutes down the corridor to spend another 30 minutes in the second session.
I enjoyed myself - catching up with fellow patient advocates, sharing our challenges, hugging each other and talking about the future of oncology patient care. One specific topic that resonated in my mind throughout the ASCO meeting was “global inequity in access to cancer care”. I attended some sessions where clinicians made insightful presentations on new data, clinical trials and drugs that were shown to have the capacity to change the face of some specific cancer care forever. I was overwhelmed by the progress that we have made in finding cures for many cancers and to see how survivorship can be increased with innovations in medicine and better care. It was heart-warming that the 2019 ASCO annual meeting had a patient-centred theme “Caring for every patient, learning from every patient”. This theme is global and inclusive; it does not refer to breast cancer only or lung cancer patients only. Hence, there was no controversy about campaigning for pink over blue. It did not focus only on early cancer patients over metastatic cancer patients; there was room for everyone. Every patient of any form of cancer was the focal point. Thanks to ASCO for a wonderful meeting and thanks to Chicago for the beautiful weather. However, despite my excitement, I was still puzzled, asking myself one question: “Why are metastatic cancer patients dying too early in Africa and other LMICs?”
My dear friend Britany Canarsie from New York, USA has been living with metastatic breast cancer for the past 7 years and she is doing great, if not even stronger than some people without cancer. In 2017, when I first met Britany at the Advanced Breast Cancer Conference in Lisbon, Portugal, she said her greatest fear was whether she would be able to see her grandchild. As a result of access to better care, Britany has seen her grandchild and will still be here to see the great strides her children are making. There are many Britanys in sub-Saharan Africa, who hoped for another chance at life but never had one. There are many Britanys who sold their lands, houses and other valuable possessions to get a second chance in life, but never had the opportunity. All because they do not have access to better quality care as Britany received in the USA. In 2017, Project PINK BLUE raised over N11,000,000 ($30,000) in funds and drug support for Ene Ortom, a HER2 positive breast cancer patient, but we lost her in 2018. In my estimation, if Ene was living in the United States or in Europe, she would very likely still be alive today. The same is applicable to my friend Beatriz Santos, living with metastatic breast cancer for over 7 years. I am so blessed to have been working with her on the Patient Navigation project since 2018. I am also thrilled to see my friend – Elsie Smith, a beautiful lady living with metastatic breast cancer for over 5 years. She has been doing some inspiring modelling on Paris’ celebrity stage, gaining strength every single day, changing narratives despite her pains. All these women and more portray the power of access to oncology innovation.
The question then remains: why are cancer patients in LMICs far more likely to die than those who live in the countries where Britany, Beatriz and Elsie reside? I asked this question in the conference session and the response that I got was that there are no medical infrastructures for oncology clinical trials in most LMICs like sub-Saharan Africa, especially Nigeria. While I find the answer to be correct, many of us who are advocates for access to better care and global equity will want to help. On second thought, whilst medical infrastructures are lacking in LMICs, is the market for these cancer medications lacking too? If we want to make global cancer control truly global, we need to include everybody in oncology clinical trials especially patients in Africa and LMICs. In LMICs, people are battling heavily with infectious/communicable diseases, painfully when many of them survive communicable diseases they face a non-communicable disease like cancer and very few survive it. For instance, in Nigeria, we are losing our people at a time when we need them most, at a time when they are beginning to be more useful to society, contributing to public life and providing mentorship to the younger generation. Every single day, 15 men die of prostate cancer, 31 women die of breast cancer and 28 women die of cervical cancer, according to estimates from the World Health Organisation.[i] I strongly believe that we have a lot to learn from everyone, I strongly believe that we can do a bit more, I know that we can, I hope that we can.
Amid all my excitement, I left Chicago disappointed. I was worried about access to all the innovations presented at the meeting. My concern is the same in almost all global conferences: you will rarely see data from Africa and LMICs. In my estimation, a breast cancer patient in Texas is the same as a breast cancer patient in Lisbon and Lagos. The only difference is access to care and this is fundamental to survivorship or quality of life. We all gathered and discussed extensively on diverse clinical research to improve care for every patient globally; however, I still see so many patients not having access to this care. I see millions of patients living in LMICs not having access to these great world wonders. I have seen tens of people die of same cancer that another patient has survived in another part of the world.
If we want to make global cancer control truly global, let’s provide access to oncology clinical trials to everyone no matter where they live.