Engagement and humanity in cancer care

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Published: 21 Nov 2017
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Ms Kwanele Asante - Founder of BreastSens and AORTIC Secretary Treasurer Elect

Ms Asante speaks with ecancer at AORTIC 2017 about bringing patient advocacy and engagement into the scientific program.

Speaking from a legal background, she describes the global provision of healthcare, and outlines how she believes African health systems could improve the care provided to patients and their bargaining position when approaching drugs manufacturers. 

Ms Asante also draws attention to the need for a consistent cancer control plan and education for patients and clinicians, citing her personal experience with cancer, and discusses the difference in experience and expertise of AORTIC member nations in cancer management. 

I’ve always wanted to come to AORTIC because they are, in my mind, Africa’s leading cancer research institute. But what I felt was missing since my first AORTIC was the patient’s voice and I do understand that they do important work as scientists but I don’t know how you do work in the interests of patients but not have patients at the table. So my task and my mission since I joined in 2009 was to just advocate for more inclusion and I’m very happy to say they have seen the value of patient engagement. This particular meeting has been very important because this is the first time that patient advocacy or research advocacy was included as part of the main scientific programme.

So what did you cover?

I covered, aside from just giving what everybody knows, the burden of cancer on the continent and the projected economic and social fallouts that are going to happen, I drew people’s attention mostly to the fact that cancer is potentially going to do to Africa what HIV did and unmitigated it is going to cost a lot of human suffering. I emphasised the value of proper interactions by state leaders like Presidents and things like that. I’m a lawyer, I’m always going to find refuge in the law so I sketched out the international law aspect in terms of the right to health, drawing everybody’s attention to the fact that the concept of non-discriminatory, highest attainable standard of healthcare was first pronounced in the UN constitution, in the WHO constitution, of 1946, the preamble, and that we’re still sitting with growing global health disparities but we’re particularly sitting with this huge burden of cancer in Africa. Something has gone amiss, the notion of universal health coverage was first pronounced in 1978, the Declaration of Alma-Ata, so we know that some of the leading countries in the world who shall remain nameless are removing universal health coverage. Other countries are working towards that and my stance is I’m grateful that we’re doing it but I’m also wanting to draw people’s attention to the fact that we are late.

Time is of the essence; African leaders particularly. Giving people access to treatments is not a ‘nice to have’, it’s not an act of kindness by you as a state leader; it is your legal obligation when you sign and ratify protocols and UN international instruments. I wanted people in this conference to realise that we need to be talking a rights discourse, we need to help Africans with cancer articulate their right to health entitlements. They need, African patients and society need, to start holding African leaders accountable. Africa cannot forever be counting on the international donor fraternity to come to the party; we need as Africans to start negotiating as a power block for important things like access to medicines. We go and do trade, so when we go into those trade agreements let us be very clear as a continent what we’re going to do. But it first has to start with getting our house in order in terms of infrastructure, training of important people for cancer, ensuring access, ensuring consistent evidence based cancer education. We cannot continue with this flavour of the month. It is absurd that we see leaders on my continent come out for the UICC World Cancer Day and they all are so committed to cancer on this one February day. Then they wait for October and then we see my leaders starting to have pink ribbons and then we wait for November and they do whatever the colour ribbon.

People with cancer do not have the option of putting cancer on and off. We speak about these phenomenal statistics projected and already mortalities and morbidities now. People with cancer are not statistics, they are human beings, they have inherent human dignity. For as long as I live I will continue to advocate because, for me, it’s personal. I have had cancer; I suffered severe heart damage, I am on chronic medication for the rest of my life for congestive heart failure. I have a defibrillator in my chest. I am very aware that amidst the poverty  of Africa, I’m able to access essential treatments that I need to stay alive. Whether you have access should never be about the size of your wallet. I’m very aware that some patients in northern countries also struggle to afford treatments and for that reason my talk really emphasised global solidarity. We can do things like knowledge share from my colleagues in the global north but we as human beings need to just start a rights based equity, not charity.

Do you think there’s a country in Africa that gets it right?

I’m pleased to learn more about our host country in terms of what they are doing, the spend on their GDP at 17%, that’s very out of the ordinary. But I know that they are very young in terms of cancer care but the Minister of Health has been at this conference a lot on behalf of her government. They are working on the access, Africa Access Initiative for Cancer Medicines, that was just launched a few days ago. They’re doing a lot of things; they’ve just yesterday or two days ago signed a partnership, a knowledge partnership, with Harvard. They have a global health catalyst thing.

My country, South Africa, is working harder and I’m very biased because I’m the Chair of the Ministerial Cancer Advisory Committee. We got it wrong for a long time. What I referred to earlier about this tendency to focus on cancer when it’s cancer months and things and then when it’s over you say there are other competing things and you forget cancer. So, yes, South Africa is working towards more. We are about to reform our patient law in the public interest to make access to medicines, essential medicines, more practical and whatever.

I know Egypt is also doing some good work. I’m very hopeful about Nigeria, they are the most blessed African country because they have a cancer researcher who used to be the President of AORTIC, Professor Adewole, as their minister. I’m hoping that he will step in, because this is an appeal if he ever watches this, he’ll step in and help his counterparts in Africa understand cancer as a disease. That’s one of the main things. The populations don’t understand the disease and unfortunately a lot of the senior people do not understand cancer and we’re not going to get there unless people commit money and resources and invest time in learning so that we can do things better.