CAPRISA hosted it’s Scientific Advisory Board Meeting earlier this month and was privileged to have Minister of Health, Barbara Hogan, give the Opening address. Thank you for the invitation to be here today and for creating an opportunity for us to continue to build bridges between government and the health research community. The importance of a respectful relationship between those in power and the scientific vanguard is illustrated by a story that I have always loved and that I am sure most of you know. It is the story that Galileo, when he was forced by the Roman Inquisition to disown his theory of that the earth moves round the sun, mumbled under his breath, “But it does move.”

What I learnt only recently was that this version of how Galileo reclaimed a bit of dignity in the face of tyranny only surfaced many, many decades after the event. Which makes us think that it was really a bit of reputation management by early PR practitioners. I also learnt only recently that Pope John Paul II formally reversed the Vatican’s view on Galileo in 1992, saying the whole thing had been a “tragic mistake”. It was then announced that a statue of Galileo would be erected within the walls of the Vatican and it seemed that things had been put to rest after nearly 400 years. The fact that the statue now seems to have been scrapped spoils the happy ending a bit. But what this says to me, on the one hand, is that science has an intense need to preserve its integrity and its reputation for integrity. And it also says that the modern power establishment, unlike the Vatican in the 16th century, needs science in order to run the world. So those who wield power should respect the integrity of science if they want to reap the benefits of scientific inquiry.

 

And this, I want to say, is the starting point of my engagement with scientific institutions. As government we should avoid making demands of scientists that compromise their academic freedom and the ethics of their work; we should, wherever possible and available, utilise scientific evidence for policy development; and we should refrain from using our access to public platforms to undermine scientists with unsound criticism. That much is clear – and that much is relatively simple.

 

But it grows more complicated from here on. The policy making process is quite a messy affair because it has to take account of countless factors in the real world. And this process of translating evidence into policy and programmes for delivery of health services can impact on the relationship between government and researchers working in the same area. There are occasions when it is possible to translate research almost directly into protocols for national practice.

But these are relatively rare. More often the practicalities of delivery – limited healthcare budgets, variable health service infrastructure, shortages of skilled staff – may lead to a series of compromises. And the health policy that is adopted may call for interventions that are quite far removed from the practices followed during the trials that originally established efficacy of the new technology. We are all aware that the South African CD4 count threshold of 200 for entry to the public sector ART programme was influenced by cost considerations and is regarded as sub-optimal. But it has allowed us to stretch our budget to get 700 000 people on treatment in just five years. And, from today’s programme, we will be learning from real world implementation how well the treatment outcomes are with this approach. Such dilution of practice is not confined to the field of HIV and AIDS. In the public sector, our policy is to offer women three PAP smears in a lifetime.

We know this number of tests is not a 100% guarantee of early detection of cervical cancer. But we couldn’t afford to go the whole distance – so we opted for the best cost to benefit ratio within our budget. What is the role of the scientific researcher when such trade-offs are made? Undoubtedly some pragmatic adjustments
could throw carefully tested, reliable outcomes right off target. So what does the real scientist do in such situations? Does he or she break away from the whole policy process and run for cover, or engage with the policy development process to safeguard the outcome as best as possible? So much for the “corrupting” influence of programme realities on the fruits of research. What about the equally common factor of commercial incentives in scientific endeavour? Every person in this room is familiar with the pattern of scientific neglect of health conditions that are not much of a problem or threat in the rich countries of the north. I am not going waste time describing a situation that you are all familiar with. But I would like to highlight the enormity of this scientific dereliction. Our failure, for example, to find effective means to tackle TB in developing and destitute
countries when control was still possible has led to a situation where this disease claims 2 million lives a year. Now if we assume that health research shares the ethics of other health professionals, this becomes an ethical failure of epic proportions. I would argue that the scale-up on normal ethical breaches is more or less like the leap from common crime to crimes against humanity.

 

The neglect of the suffering of people in developing countries has undoubtedly tarnished the image of pharmaceutical companies and cast them in the popular press as modern day villains. More than a little of this has rubbed off on the research establishment. Recently there has been a huge injection of funding for health research through non-profit institutions like the Howard Hughes Medical Institute, US National Institutes for Health, Global AIDS Program and Bill and Melinda Gates Foundation. This has enabled a greater number of researchers to focus on the neglected diseases of low and middle income countries. But more than that, the Foundations like Gates, Doris Duke and Mark Schwartz in particular have injected an entrepreneurial confidence, a conviction that innovation is inevitable if you just try hard enough. And suddenly we have a whole range of antimalarials and malaria vaccines in testing across Africa, new TB diagnostics within reach, and a series of trials on a new generation of microbicides. I don’t have to tell you at CAPRISA that these winds of change have refreshed research in this part of the world because there is hardly an area of HIV, AIDS and TB research that you are not involved in.

The Gates Foundation itself initiated a stock-taking of where funding on research into neglected diseases in poor and middle income countries was making inroads. Perhaps they suspected that something of an over-correction had been achieved in terms of increasing research resources for HIV and AIDS, malaria and TB. The funding review that the Gates Foundation commissioned suggested that some 80% of funding for research on neglected diseases of developing countries was going to AIDS, TB and malaria while, two groups of diseases with an equally serious disease burden – pneumonias and diarrhoeal diseases – received a paltry 6% of research funding. So we need to be aware that there is still a serious disjuncture between research funding and the nature of the disease burden carried by the people of poorer countries – and therefore by their health services.
This could impact on the relationship between health authorities and the research establishment.

 

 

A new trend in the field of scientific work is the incorporation of advocacy into research programmes to develop wider understanding of the significance of the research that is being undertaken. This is undoubtedly a positive approach – it democratises the scientific process by making information accessible at an early stage to the lay public, including politicians. It has the potential to facilitate better decision-making about the introduction of new technologies into national health programmes. Advocacy of new technologies can, of course, make the policy process more turbulent and robust – for instance when health rights groups or other stakeholders push for inclusion of interventions that appear unaffordable or a lesser priority to decision-makers in government.

 

But even in such instances, the policymaking process is likely to become more transparent, the reasons for decisions are likely to be more clearly developed, and the democratic ethos should be renewed. The last factor I would like to mention before getting to the point of all this, is that the new generation of philanthropic research funders and non-profit product developers have learnt a lot about the perils of ignoring intellectual property rights and drug pricing from the heartbreak of the early ARV era. The cost factor is being anticipated and actively managed in relation to the development of new technologies for the neglected diseases of Africa, Asia and Latin America.

I have described some of the complexities of the relationship between people like you and people like me at some length in order to justify my plea for closer working relationship health science researchers, on the one hand, and politicians and senior bureaucrats, on the other. This relationship is naturally fraught with uncertainties and can easily be destabilised. But we need each other in a very real way to fulfil our goals of benefiting society. Therefore there needs to be a sufficiently strong foundation of trust in our working relationship to withstand any specific tensions that may arise. The recent AIDS Conference was a salutary lesson. It presented a veritable feast of HIV, AIDS and TBrelated research of varying quality and significance. As government, we were aware of only a fraction of this before the conference. And we were only able to get a handle on a slice of it during the conference through the attendance of sufficiently senior officials.

What was clear from the conference was that scientists themselves work in silos and have a limited appreciation of each other’s field of inquiry. It is understandable that a conference of this size has to be managed through parallel “tracks” of subject matter – but this certainly does not help to integrate knowledge. And policy making
does require a certain degree of integration.

 

Government and the health research community need a more purpose-built platform for regular interaction. In my view, this process needs to involve both technical experts within government – the people who develop the policies - and political heads of health at both national and provincial level, who have the decision making authority. The natural forum for the greater integration of AIDS-related research across several fields of inquiry is the South African National AIDS Council, which is only now growing into its potential as the heart of a multisectoral national programme. It is the natural place to present and explore the implications of the full range of good quality evidence – social, economic, epidemiological, basic science and clinical science. Apart from its multi-sectoral, multi-disciplinary character, SANAC has the virtue of being a cross-over between government and civil society. There are far too few forums of this nature available to inform the development of policy. And, as the SANAC secretariat takes shape, I believe that this governmentcivil society interface will emerge even more clearly as a strength of the structure. In the period just before a national election, no government Minister can make specific promises. But all opinion polls to date point to the return of an ANC government at national level and in almost all provinces. And in the ANC there is absolute clarity that the healthcare system needs to be greatly strengthened, that the AIDS response must be improved and that the evidence produced by reputable scientists must inform this process. It seems to me, from my brief engagement with research bodies like CAPRISA, SAAVI and the Aurum Institute as well as the major government-funded institutions like the MRC, that our capacity for the conduct of relevant research has never been greater. The international partnerships that have flourished over the last two decades have greatly enriched our scientific life in South Africa and I would like particularly to recognise the role of CAPRISA’s partner institutions both locally and from abroad - the University of KwaZulu-Natal, University of Cape Town, University of the Western-Cape, National Institute for Communicable Diseases, Aurum Institute and Columbia University. I feel enormously proud as a South African that we have CAPRISA, although I can only claim to know a fraction of the work you are doing. For example: I know you are the first to become involved in clinical trials of ARV based microbicides with funding both from our government and the United States government.

 

We urgently need to curb the spread of HIV in young women and so we eagerly await your first findings, which are expected in about a year from now. I particularly want to applaud the IP arrangements concluded between CONRAD, LIFElab and CAPRISA where the South Africa is assured of a royalty free licence to manufacture and distribute tenofovir gel in the SADC region. Our government is already looking into local manufacturing capacity to accelerate access to this important new technology if it is shown to prevent HIV. We have few options to protect the youth from HIV – your research in the rural schools of Vulindlela with the Department of Education
and the Media in Education Trust is crucial – we wish you well with this project and look forward to the results.
I am aware that CAPRISA has played a role in understanding the genetically determined immune responses leading to HIV control following acute HIV infection, a line of investigation that has opened a new window of hope AIDS vaccine research. And I know that your work on treatment of the combined conditions of HIV and TB has led to changes in clinical practice to provide integrated ART and TB treatment. This widely respected finding is an example of the practical research needed, as I mentioned earlier, to effectively treat neglected diseases.t seems to me that very few institutions of your size can have such varied cutting edge involvement. Finally, if there is one thing that has particularly excited me about CAPRISA’s programme for this meeting and its prospects for the future, it is the role of young scientists in your work. I wish you well as you share and deliberate on the processes and results of your research. I believe you can be confident that your work not only has inherent meaning in the context of the major epidemics we face, but also that the political environment will allow you to contribute to our national health programmes and to the wellbeing of people across our land. Thank you for the opportunity to visit CAPRISA, to learn a bit more about what you do and to share these thoughts with you.

 

- Barbara Hogan, Minister of Health

The presentations made at the SAB Meeting can be viewed at http://www.caprisa.org/joomla/index.php/component/content/article/153