This post is originally published on Johns Hopkins Bloomberg School of Public Health Global Health NOW and is written by Brian W. Simpson.
Kwanele Asante speaks her mind. And what’s on her mind at this year’s World Health Assembly is real action on noncommunicable diseases.
The South African lawyer and bioethicist lives with 3 NCDs and has participated in a half dozen panels. She wants the millions of other people worldwide with similar conditions to get the kind of quality care she receives. “I don’t want to feel this discomfort of knowing that I have access to privileged health care in a developing world context and the majority of my compatriots don’t have the same access,” she said in a Thursday interview following a side event on universal health care. “It’s immoral. Health is something that we need.”
Are you representing an organization here?
I actually came here on behalf of the NCD Alliance. I’ve recently been asked to join their 2018 Global Advisory Committee, but particularly to help them focus a rights-based appeal for the upcoming UN high-level … meeting on NCDs.
If we’re going to be in a UN context where, from 1946, the preamble to the UN constitution gives this notion of the highest attainable standard as a fundamental human right of every person. That’s their language, and it’s just very ironic that now we’re sitting in 2018 and when population groups around the world are starting to say, “Hi, we’re going to hold you to your rights discourse,” there is a sense of high-level discomfort as though we’re being revolutionary or we’re being unreasonable.
If you had one major goal to achieve here at the World Health Assembly what would that be?
My one major goal is just to emphasize this message of we need to stop with the rhetoric. It’s nice to have a new [WHO Director-General] who says all the right things, but the proof is really going to be what we do when we go to the UN high-level meeting this time around on NCDs, and what amount of global real resources in terms of finance is going to be given to close the current global health disparities.
Do you feel a special responsibility here at WHA? You’re not only speaking for yourself, but for so many other people who suffer from NCDs?
I feel a particular, very personal responsibility actually. I was diagnosed at age 37. I was told that my prognosis was really bad. I wouldn’t see 38, but I’m here. Once I had recovered my health sufficiently I started working with people in informal settlements in South Africa, and I met 3 awesome women who were living with the complications of chemotherapy like I was. The only sad thing is they all didn’t make their 35th birthday. They died. These were mothers, these were hugely intelligent people, very dignified people, but what was different was they didn’t have access to the essential medicines that I have access to.
I feel a very strong sense of moral duty, and I’m really committed to use my legal training and my voice to just ask everybody to sit up and realize that we’re talking about lives here, you know?
You’re obviously impatient to get beyond the words here to action, to results. Will you leave here feeling optimistic at all or do you feel like it’s just a lot more talking?
I feel more optimistic. I’m exhausted. This was my sixth panel, but I saw especially in panels where I had more engagement, I saw a grappling, I saw a discomfort and a sitting up to say, “Wow, yeah. You’re right. Thanks for calling us out. Yes, we commit.” Even with the one panel I spoke on civil society engagement with DG [Tedros Adhanom Ghebreyesus], he said, “We need civil society to hold us accountable.” When I started my first panel I promised them that. I told them that I am going to be one of the people who are going to disrupt this opulence and rhetoric, and I’m gonna make them get real. In some platforms I’ll speak in beautiful English. In some platforms I’ll just be in your face because millions of patients’ lives are at stake.
Really, I’m going to borrow the script from the AIDS movement … this notion of nothing about us without us. Patients’ inclusion, substantive inclusion, that’s what we want. We don’t want this peripheral atonement. We want to be central to what’s happening, because ultimately it’s our bodies and it’s our lives that are at stake.