I’m a 22 year ovarian cancer survivor and have been an advocate for something for a long time. I’m an activist so I prefer, actually, to call myself a health activist rather than a cancer advocate. I’m not advocating for cancer, I’m advocating for global health. I believe that that’s an absolute right and so my whole push towards activism and making sure that others receive the quality of care that I want my grandchildren to receive. I think the kids that I’ll see in Maputo should be getting the same kind of quality care, whether it’s cancer or infectious diseases, whatever it is, they ought to get what my grandkids want and I want my grandkids to get whatever is the top of the line. We cannot expect or want something different for other people and that’s why I advocate, that’s why I consider myself an activist.
I think that those of us who can, and I mean can by have the will, I’m not talking about finances at all because it’s not a financial issue. For me, as I said, I’ve been going to AORTIC since 2007 and there have been times when I have had to pay for that on my own out of my own finances. I’m not in the position to do that easily, however, I’m not in the position either to ignore things that I think are important. If I do that I’ll have a hard time advocating anywhere; I’d have a hard time saying certain things. I’d have to change my position in general because I think you cannot, you absolutely cannot, selectively decide who should get the best. All of us deserve the best and so that’s why I’m an advocate really, an activist. It’s important to me. It’s important that my children and my grandchildren also see that and understand that and they’ve supported it wholeheartedly. For my family it’s not always been an easy issue to support financially but it’s something that we understand to be important. One of my daughters has actually travelled with me, two of my daughters, actually, have travelled with me to do this work because it’s important to us.
What are some of the fundamental issues with the problem of inequity in healthcare?
I think some of the problems with inequity in healthcare have to do with stereotypes and misconceptions. I also think it sometimes comes from a sense that, quite frankly, people don’t like to hear it but that we think some people aren’t worthy of things. I think that unworthiness, no-one is going to say it, well some people will say it, most people will not acknowledge that they feel that way. But, in fact, when I sit in meetings and we’re talking about scientific research and funding and so on here in the US, and at other places as well, I’ll notice that there is discussion about funding in some parts of the world and not other parts of the world. When I say, ‘Well, is there anyone represented from the continent of Africa?’ the first answer I get, ‘Well, they’re not ready for it.’ They will never be ready for it if we don’t invest in it. This is an infrastructure issue, it’s not about the number of people who are qualified to do work in Africa. The infrastructure in the years that I’ve been going, more than eleven years, it’s been tremendous the growth I’ve seen through AORTIC and so on. There are talented researchers there who could be tempted to leave the continent if they can’t find ways to do the research. A number of people who actually have left the continent are extremely active in making sure so they still are dedicated to that work. But we have to invest in the infrastructure, we have to partner and partner in real ways where we’re not talking about partnerships that you partner because that’s how you, a larger institution, a more prominent institution, gets funding but you make sure that it’s meaningful and that it’s an equal partnership. We have to invest in advocacy. In the US advocacy has been just tremendously important in terms of funding and in terms of the programming and talking about survivorship issues and so on. That’s never going to be the case in the developing world if we don’t make an investment and we don’t change our attitudes about it and we don’t understand that survival and survivorship are important in the developing world. We tend to, if we focus at all, focus on just keeping people alive. Well there’s a purpose for that, there’s got to be a quality element to it. So we have to invest differently; we have to mentally invest as well.
What should we be investing in and where do we move forward in this area?
We can invest in the education and not because there are wonderful opportunities on the continent. We can invest in opportunities that remain on the continent – we can invest in making sure that young scientists and early career researchers and so on have the opportunity to train in some of our institutions that have the ability to have them use equipment, perhaps, that they haven’t used before. We can invest in terms of the human capital of making sure that there are people who can advocate who are healthy enough, quite frankly, to advocate for certain causes, particularly cancer. We can make sure that, for instance, cervical cancer, which we seem to have thought for a while that we’d almost not eradicated but it wasn’t a major problem, it is a major problem here in the US. It’s akin, actually, in some communities by zip code it’s as difficult a problem and as indolent a problem as it is in some parts of Africa which we don’t think of. But we can find these communities of people who are having a greater difficulty than we have in the US where the disparities are awful and we can send people to work with them but to train them, not to do the work and leave.
When you come in and you build something or you come in and you support a group and you leave and you leave nothing you haven’t provided anything for them. I think we have to provide things that are left in place. We have to provide equipment but when we provide equipment it’s really important that we provide the training. Because what we then hear is, ‘Well, there’s equipment sitting all over the continent or sitting all over wherever and it’s not being used.’ Well, it’s not being used because you sent the equipment, you didn’t send the training, you didn’t send the personnel, you didn’t come back periodically to make sure things are calibrated. You didn’t make sure it was in a region, the equipment was in a region, where electricity is always available and so on. So we have to do an assessment, see what people think they need, because it will be different and I know I keep saying Africa, all the countries are different, more different than the states are, probably, in the United States. So we have to keep in mind that what you might do in Kenya or you might do in Ghana you might do something different in South Africa, you’ll do things differently in all of the countries. What you need to do, we have to listen to people. Talk to people and find out what they think they need. They will know better than probably most reports that you will read on the issue. So we have to talk to people.
We have to talk to people who have an investment already in the continent. You have to talk to people, everyday people, on the continent and see what they need. Once they tell you what they need you can work with them to see if that aligns with what you think they will need in order to move forwards. But we have to always leave something behind; we can’t go in and have a nice talk and talk about advocacy and talk about survivorship and talk about palliative care and wave and say goodbye and come back the next year and have another nice meeting. We’ve got to do something. Our words have to have meaning and they have to be backed up with equipment, with funding and with the desire to spread the word. We don’t disseminate the information about what’s happening in terms of cancer care, the good things and the bad things, in terms of research in Africa. A lot is going on, a lot of things are going on. There’s a group now that works with behavioural scientists and care in Africa, that wasn’t true before. That’s tremendous.
Is there anything else you would like to add?
It’s just important to mention that everywhere that I’ve travelled on the continent, just remember, again, that there are cultural differences, there are language differences on the continent and so on. So when we talk about Africa we have to be clear that it’s not a one shoe fits all, and I’m horrible with clichés so I probably said that incorrectly, but that we have to tailor things. There are people doing tremendous work on the continent against some really difficult odds. Years ago when I first went to… I think I was in South Africa the first year I went to AORTIC but I was talking to someone about cancer care in general and about the priority in terms of cancer. It wasn’t even on the list of priorities for many countries because they had so many other things like infectious disease and so on to deal with. But there’s a definite large cadre of people on the continent who are trying to change the whole face of cancer to give hope to people when they get cancer so that you don’t have women and men coming in at such late stages because they realise there’s no care available. We need to change that, we have the ability to change that, and it’s not just the will. You’ve got the will to do it, we have to put the will in action. We have to act on what we know, we don’t have to reinvent the wheel, we just have to tailor it so that it works in a different setting. We can do this and we should do it.