Evidence, empowerment and education
SUMMARY: Advisor to the Editors of Disease Control Priorities Project, Pramilla Senanayake, says it should become the “bible” for health and finance ministers. Chair of the Global Forum for Health Research Foundation Council, she gives RealHealthNews her life’s vision for evidence for health, for research and development – and for women’s education.
RHN: The central plank of the Disease Control Priorities project (DCP2) recently launched in Beijing has been to collect evidence to identify the best interventions for health in developing countries. Would you tell us your perspective on that?
PS: Evidence is one of the reasons why I’m part of the whole Beijing group for DCP2. I believe evidence-based medicine should be the norm.
Now to create evidence needs research, and the Global Forum for Health Research, set up in 1998, took on the cause of the 10/90 gap – only 10% of resource for health research being spent on diseases affecting the world’s poor, while the other 90% was for the rich. Now even DCP2’s more recent findings shows that of 1300 new drugs brought to market, only 15 were for conditions that affect the tropics, in other words the world’s poor. So my whole concern in this area is this lack of research on issues that affect the poor. If we are to solve the problems we need the evidence base, and even now we don’t have it. We’ve made a dent in the problem but we need to do a lot more.
RHN: And you are of course Chairperson of the Foundation Council of the Global Forum.
PS: Indeed. Another hat I wear is the Chairmanship of the Concept Foundation, located in a developing country, in Bangkok, Thailand. Our main ambition is to find manufacturers, distributors for the so-called orphan drugs. The term is used willy nilly, but to us it means a product that might have been researched by quite often a public sector organization, like the WHO, or the Population Council if it is for example in the area of contraceptives. What happens is that these products are brought to the table as one tablet or one injection or one implant or whatever. But the organizations don’t have the know-how, or don’t want to get into manufacture and distribution like industry would.
But quite often industry is quite happy to grab a product like this because that’s almost US$200 million spent on research on the route down their product line, so they will take it and run with it and make vast profits. Now we have no intention of letting companies do that, with products developed with public money! So we go to manufacturers with good reputations in developing countries, and give them the know-how and training to become good manufacturers of these products, so they can manufacture the items at low cost, give it to us – the Concept Foundation – at cost price, and then we can in turn distribute them at a low price to developing countries.
Already we have HIV rapid tests – dipsticks – on the one side and Cyclofem, a monthly injectable contraceptive. Cyclofem is a very good example – and I’m very much a women’s reproductive health person! It came on the market through the research of WHO and PATH in Seattle. But it didn’t have a chance to be a method that women could use in developing countries because there was no manufacturer. So Concept came in, became almost a broker, took the product to Mexico, Indonesia, to Thailand, found good manufacturers in these countries, gave them extra know-how on clinical data collection and testing procedures, and we now have a super product coming out of for example, in Indonesia.
RHN: What about the intellectual property – patents?
PS: There’s no problem with intellectual property (IP) as Cyclofem was developed by the public sector. But that’s another area I’m interested in – I happen also to chair a fairly new group called the Management of Intellectual Property for Health RESEARCH(MIHR), based in Oxford, England. We’re looking at products manufactured maybe in rich countries, and at how we transfer the IP to developing countries so they can benefit from these products, training the developing countries in IP transfer…
RHN: …so the training helps in giving the countries a more sophisticated relationship with the drugs companies, for example…
PS: Exactly. But the reverse is also more true, when we look at products coming out of developing countries, as they do sometimes with good research – they don’t have the know-how to get it up to a level where their IP is acceptable around the world.
RHN: I’d like to come back a little. What motivated you to move in these directions. You began in reproductive health. You obviously saw and faced some issues that motivated you. What were those issues?
PS: They were mainly to do with women’s health and child health. I started as a paediatrician and became a reproductive health physician.
And I saw women dying unnecessarily. We know that 500 000 women die every year due to causes related to pregnancy and childbirth, but when did we notice it? Only in the late 1980s, because the data was not available. It was one little Rani in India, or one little Sita in Indonesia, and these people did not have a voice because no-one was interested in their plight.
There comes a research question: if we had done the research, finding out how many women were dying and how they were dying, the world would have been shaken by the facts that came out.
It was my good friend Malcolm Potts [then CEO of Family Health International] who translated these numbers into three jumbo jets crashing every day loaded with young healthy women.
RHN: Obviously a great deal of social research like that is still needed in health. Until this point we’ve been talking about research to create physical tools. What would you say the balance is? How much in reproductive health, for example, do we need to know about, say, delivery, or accessibility of services, or socioeconomic determinants?
PS: Good question. I have friends who say look we don’t need more research, we know all we need to know – we just need implementation. I don’t believe that to be a just and fair comment.
Let’s take contraception, an area which I’m most familiar with. We do have 12-14 reasonably good contraceptive products. If made available today to the some 150 million women and couples who don’t know about contraception or have no access, then yes, we can solve the problem.
But the other side of the coin is that these products are not suitable for all couples, so we need better methods. And you get those through research. It is true that if I have a super duper contraceptive on this table at this moment it still has to be delivered to the right couples in the right place at the right time, and so on. So we do need delivery channels and research into how to get these products over. So I belong to that school of thought that believes that these different kinds of research need to be balanced.
RHN: DCP2 identifies a list of interventions that it considers most cost-effective. What would your personal list be?
PS: Consider Sri Lanka, my own country. Sri Lanka is a classic example of a poor country, by GDP per capita. We didn’t do our own research to discover vaccines and so on. But we accepted other people’s research and we knew that measles vaccine works, that oral rehydration therapy works, so we didn’t have to reinvent the wheel – we just accepted what was known outside, and implemented it.
We gave it to the women and children and – lo and behold – we reduced our maternal mortality enormously, our infant mortality, and we are doing well on our health indices, at least for women and children. So I’m very proud to be part of that country.
And also family planning: we have 70% prevalence rates for use of contraceptives, equal to many European countries. So what have we done well?
Yes, the health system is good, but also, I believe, women’s education has been crucial. Sri Lanka was way ahead in providing education for women. I believe we have reached 90% literacy, or above, for women and men. I emphasize it’s for both, as in many countries you find say 75% of the men going to school but only 25% of the women. They may be in purdah or in some cultures where women’s education is almost taboo. In Sri Lanka fortunately we don’t have such religious problems. So right-thinking ministers of health and education got us a good education system and a good health infrastructure.
One area I find missing in DCP2 is attention to corruption and transparency – areas that I think have infiltrated the health system in virtually every country in the world, rich and poor.
You can find corruption among National Health Service doctors or those in private practice, with under the table payments to get a bed in hospital for example. On one side you might see cost-effective medicine; on the other, in hospitals which lack basic equipment a fantastic piece of the latest ultrasound equipment which many hospitals even in London may not have access to, are brought into Africa or Asia – just because someone gets a good commission out of it or a bribe.
So these are the things that I think we also need to expose. Because if we are talking about health for all and improvement of health, it’s not just the upside of getting more research or products or drugs or improving the health system – but the downside must be addressed too.
RHN: But there can be research and evidence on corruption too.
PS: Exactly. And there is. Transparency International is a group that I’m very familiar with, and they have done a lot of research on this. It’s no good to say ah, but it happens everywhere! We can do something about it!
Children are dying everywhere of measles. What can we do? Vaccinate. In the same way we have a vaccine for measles, I think we can have a vaccine against corruption.
RHN: Of course it’s a big political issue. So what can evidence do to face a big political challenge like that?
PS: This is where I am out of my depth because I am not a politician. I think the politicians have to be convinced of the corruption that takes place in their own country. But if you are an instigator of corruption then it’s very difficult to turn it around! And I mean this with the best will in the world – it happens in every country. We are sitting here in the UK and I am sure it happens here too.
But let me emphasize that when it happens in the poorer countries it affects the bowl of rice or the loaf of bread of the poor man. When it happens in a richer country, it doesn’t affect your loaf of bread or mine. That’s the big difference in Africa or Latin America or Asia This does not mean I condone corruption in the richer countries.. No not at all. Corruption should be wiped out from all countries. I was pleased to hear the head of the World Bank speak about corruption as recently as last week. However speaking alone is not enough. We need action to prevent corruption.
RHN: Do you face it even in Sri Lanka?
PS: We do.
RHN: Apart from corruption, patients also face hidden costs don’t they – apart from loss of income they have to provide their food, for example…
PS: Exactly. In many countries – although the health service is “free”, you have to bring your own drugs and bandages and drips because the hospitals don’t have them. That’s just inadequate supply. I’ve been to African hospitals, Asian hospitals, where they don’t even have an aspirin or a panadol. So the patients have to buy them, which they can ill afford, especially a woman. She always puts her child or her family first so if she needs treatment she’ll be very lucky to get the drugs she needs.
That’s where international funding is very important, but coupled with the fact that countries need to look clearly at what they need – not what the donors think they need. But for that you have to have totally honest, able managers who will ask for what is right. Quite often they know, but won’t ask for it!
Also there is the whole issue of brain drain. It’s a crucial factor in medicine. A lot of doctors are tempted by higher salaries to go outside – and I can’t blame them; it’s important to get the best for your children, and to get the best job satisfaction.
Working in a developing country, especially in a rural area, job satisfaction is difficult. Either you have to see 200 patients in half-a-day’s session, or your pay doesn’t arrive, or you’ve no drugs or equipment as the country doesn’t have the wherewithal to provide the treatments you were taught to give. So there’s a lot of frustration.
Also you don’t have the schools for your kids, or proper housing. Even as a doctor dedicated to helping the nation’s poorest, you need the basics to survive. So job satisfaction is a whole package, it’s not just the money; and people do end up wanting the greener pastures where things are much easier to come by.
If you go to a British hospital, for example, you see more non-British staff than British…
RHN: So should there be a moratorium on richer countries poaching health professionals from poorer ones?
PS: Either a moratorium – or a payback. Why can’t the UK, which gets a doctor from Sri Lanka, pay for the education of that doctor? I mean you can’t stop them applying – it’s a basic human right. But the rich country could pay, not necessarily in money but say in drugs or whatever – to make up for the loss.
RHN: DCP2 takes Sri Lanka as one of the few successes in developing country health, and you’ve talked about that. But what were the deeper circumstances that enabled it to succeed?
PS: 1948 was a turning point. Until then we were a British colony, but they left us – I think – with a good infrastructure. In spite of what colonization has done to many countries, in my opinion in Sri Lanka it was a very positive thing. The British left us with a good network of roads, good railways – and a good health infrastructure, based almost on the National Health Service in the UK, which was then very new.
RHN: But they did the same for India, and its health is not so pretty.
PS: Yes, but please – India is a continent, it’s not a country. It would be like saying Europe is a country. If you go to different parts of India you find things are totally different, with different languages, looks, climate, social structure. And within that continent you can find pockets of excellent health services. Especially in the South, in Karnataka, Kerala, Tamil Nadu and places like that.
RHN: You have a little charity of your own, don’t you, the “Educate a Child Project” to educate poor children in Kalutra in Sri Lanka, and there you’ve emphasized your belief that development must happen from the ground up – that while donors may be there to help, the real initiative must come locally. Could you expand on that?
PS: What I am today is purely because of what Sri Lanka provided for me through its education. Without that, millions of dollars couldn’t have got me here. My little project is to pay back to Sri Lanka a little.
Education in Sri Lanka is free – but the school system is so poor that if a kid sometimes cannot bring a desk and a chair, they cannot get to school! But more important the parents can’t provide them with the basics – the pens, the pencils, the uniform, even the shoes to get to school to get that free education. But I’m delighted when I see kids in this project over the last 20 years going to university, to dental school, becoming lawyers – and they are the poorest of the poorest of the poor.
But given this chance they work much harder than your kids or mine! Studying in the evening with a little bottle lamp of kerosene… They don’t have electricity, or candles – and they beat the kids from Colombo! In their O-levels, their A-levels, and their scholarship exams!
And I invest only in the kids not the schools. All I pay is for the shoes and the books and pens and pencils – £25 per child per year. Which is nothing – two decent bottles of wine.
RHN: So this is where development comes from.
RHN: To come back to education and women’s health, how exactly does it relate to women’s health and what kind of education are you talking about? In reproductive health for example? That’s a sophisticated topic, not just a matter of sex education…
PS: Well my project started with HIV education. And it’s not sex education. In Sri Lanka today, sex education is taught in the old-fashioned way, birds and bees rather than love and relationships and partnerships. I believe you need to give the whole picture – it’s not just anatomy or physiology.
RHN: But you first talked about literacy and women. Is even literacy alone useful?
PS: I think it is, because when women can read and write they read the newspapers, they listen to and watch the news, they are open to the wider world. They know what’s good for their children, and with literacy they can find out about infections, diseases, immunization, nutrition.
Studies around the world have shown that for a baby’s health it’s twice as good if the mother is educated than if the father is educated! Though it’s great if both are.
And when I speak to the mothers of my children in Kalutra, they say “Madam, we really want to educate our children”. They don’t want to leave them in ignorance. That’s the cry.
RHN: Your life has mostly been one of campaigning…
RHN: …so to what extent has evidence been important to the success of your campaigns?
PS: Very important. You are not credible if you talk about issues and you don’t have the facts to support them. And that’s why research is vital. You need the evidence. If I tell you not to smoke, or to vaccinate your child, I should have the evidence to tell you why. Or why the mother should use contraceptives, or what methods are best…
RHN: Now when does evidence become powerful? Because there’s evidence at all sorts of levels, from 10- or 20-person studies, right out to the great systematic reviews of dozens of major papers. But in terms of getting change, what kind and level of evidence works?
PS: I think it can work at all levels. I don’t think we have to wait for the large systematic global studies. But this is an area where big is beautiful rather than small – the more evidence the better.
But quite often it can be a matter of twos and threes. Say in my experience I’ve seen two women who died of doing this or that – and while that shouldn’t convince me I should start to look for more evidence.
RHN: In the politics of evidence, particularly at national level, do you think it’s important to have local studies? I mean sometimes you have a big international study [in a few countries] with a strong positive result that’s hardly acted upon elsewhere. Do you need local research in each country, however small, to make it your own, before it’s accepted?
PS: In an ideal world. But I think resources are limited. Take oral rehydration therapy. It was [proven] in Bangladesh, and many other countries. I don’t think Sri Lanka or Jamaica or wherever should say we are not going to adopt ORT without local research.
But one has to look at the evidence. What I keep saying is that small countries don’t need to do all the research themselves. But we have good researchers and scientists in every country; so let them analyse the data that comes from elsewhere, and interpret it for themselves and their own environment, rather than start to do it themselves.
he politics comes in when it is a crunch issue like contraception or an expensive product; but in many cases you can extrapolate from data from most parts of the world. In some cases, if there is a social or cultural issue involved, then you do need a local study.
RHN: Let’s come back to DCP2. It’s a massive study, with 300 authors and 700 reviews, and they’ve identified, on the basis of solid evidence, what they consider the most cost-effective interventions. Now when we spoke to the Editor, Dean Jamison, we asked what impact he though it might have, and he said surprisingly that if a few of his students in the long term were influenced [and maybe ministers], he would be happy. But as one of the advisors to the project, do you think it could be moved farther and faster?
PS: Dean’s a modest man! But what he’s done is amazing. This should be the bible for every health minister! But not only the health minister. Also every minister of education and finance.
For too long we have concentrated health as only the health minister’s realm, and that’s where the problem has been. The health ministers have the lowest budget; it’s the least important ministry in many countries, with very few exceptions; and he or she has the least clout in terms of implementing things.
RHN: And it’s seen as a spending, not an earning ministry.
PS: Exactly. It’s the black sheep. So [with DDCP2] I think we ought to at least try to involve a group of ministers involved with health. Ministers of Finance are very powerful, and they are getting very conscious of things like DALYs.
DCP2 does show that even in the US, the increasing expectation of life, by about 20 productive years, contributed more to the growth of the economy than any other economic factor. And I think that’s repeated in other countries. So I think ministers of finance are now looking at days lost through ill health much more than are ministers of health.
RHN: This began perhaps with the WHO Commission on Macroeconomics and Health in 2001…
RHN: But it’s been building, hasn’t it…
PS: Yes, with DALYs in the early 1990s – I think that was the starting point. You know the medic looks at one person, to cure their condition. But economists look at communities. I think that’s the thing.
Prevention is of course also crucial, and DCP2 addresses that. With good prevention you don’t actually see anything!
I’ll give you one example. When I was a young paediatrician, way back, it was great – a child comes in almost at death’s door, moribund, wheeled in, and you gave that child a drip or a tablet and the child walks home perfectly healthy, and the parents think you’ve played God! And you haven’t, all you’ve done is give some basic medication.
That’s in curative medicine, with gratification, the satisfaction. But in preventive medicine –family planning – what do I see? I don’t see the number of children I’ve prevented from being born, or women whose lives I’ve saved by not getting pregnant and dying in childbirth. So it’s a different equation to learn to get satisfaction in prevention, to be able to grasp the impact one has.
There is this lovely book Lives Saved, produced along with DCP2, that counts these successes, and those two should go hand in hand.
RHN: How important is men’s education to women’s health?
PS: It should be a partnership. The men should be empowered too. Unless the men have been brought up to a certain level, they are not going to allow their spouse to do what she should.
There’s an interesting study from Iran, quite a while ago. Women came into a clinic for contraceptive pills to take home and use. And six months later only about 10% of the women had been taking the pill.
They did a study where they brought the couple in, and told the man also about the pills, and how it was good for their family planning, so make sure she takes it; and this time 80% of the women took it, because they had the support and help and approval of their man. So it’s a package deal.
RHN: What’s the challenge for coping with HIV/AIDS in Asia?
PS: I’ve just developed a strategy and recommendations for the eight South Asian Association for Regional Cooperation (SAARC) countries. And over and over again my recommendations were to do with stigma. Because the knowledge is there, but while the stigma is bad in other parts of the world, in Asia it’s tremendous.
I’ll give you one example. I was in one hospital in an Asian country that shall remain nameless. I was sent in by the UN to interview the staff there. There were only three patients with HIV. I went to see them. A woman was in the female ward, her husband was in the male ward, and a young boy also in the male ward. The boy was dying. He was about 22. His father was with him. But the father said he leaves home every morning at seven, tells his wife that he’s going to work because he can’t come to vocalise the fact that his son has AIDS, comes and sits with his son the whole day and goes back home. The mother doesn’t know her child is in hospital, and doesn’t know he’s dying.
With the couple, I asked the man if he was happy here. He said OK, but shall I tell you what happened? I said yes. He said that two nights ago he’d been really thirsty, at three o’clock in the morning, but he had no way to get water to drink, so he sat up in bed and waited. The night nurse walked past, and he called him to ask for a glass of water. To which he said yes. About fifteen minutes later he came back with a big bucket of water, and said, “There you are. That’s what you deserve.” And just shoved the water at him and walked off.
So that’s stigma. And in that situation why would anyone want to be tested? At the Bangkok AIDS conference in 2004, country after country – India, Pakistan, Sri Lanka, Bhutan – was talking about stigma and stigma and stigma.
There’s little voluntary counselling and testing; then we need anti-retrovirals; then mother-to-child transmission is not much addressed. So we have problems.
RHN: How much do we know about sexual behaviour?
PS: We are learning more. For example homosexual relationships were taboo, much more than in the rest of the world, but now it’s coming out and you have gay men’s clubs, and gay people talking openly about HIV/AIDS.
Commercial sex – another big issue, whether it is Nepalese young girls brought to Mumbai, or Chiang Mai girls to Bangkok, or sex tourism. It’s coming out a bit more in the open, and prostitutes are less punished, and they are coming for treatment, but it’s not anywhere near sufficient.
RHN: What is the impact of the moral constraints imposed by some of the largest sources of funding for HIV/AIDS, like President Bush’s PEPFAR?
PS: I feel very saddened by big donors like the US – for example their approach to the use of condoms. And the whole ABC, abstinence, behaviour change, with condoms as a last resort, is a kind of pie in the sky! If you are married to a guy who is HIV positive, do they expect abstinence? What is behaviour change for them? Condoms is the only road for them. So I think that restrictions put by donors on other countries are very sad.
Also when the US government gives US$100 to any country, they rake back mostly US$80. Because they insist that you use American consultants, at a fee of US$400-500 a day; they insist that you buy America medications, vehicles, or whatever; they insist that you fly on American carriers. US$20 remains in the recipient country; of that corruption will probably take half. So only US$10 of the aid actually reaches the community.
I’ve seen this over and over again with recovery after the tsunami. In Sri Lanka I see a lot of foreigners driving around in fancy vehicles, staying in fancy hotels or apartments – and we don’t need that many consultants to come over! We have enough manpower and know-how. What we need is money well spent.
I’m not saying there isn’t corruption in the country, and one of the things the NGOs are doing is looking over our shoulders to make sure we are not corrupt; but I’m saying that between our corruption, and the donor restrictions, the recipient – be it a sick patient or a tsunami victim – ends up with just 10% of the original “aid”. It’s quite amazing.
RHN: Let me ask you about the Global Framework for R&D in health, proposed by Brazil and Kenya, and to be discussed at the World Health Assembly in May [see RealHealthNews 4, pp 14-16]. In essence, this challenges our current reliance on the existing market rules, intellectual property regimes, and Big Pharma. It’s less explicit than that but it’s asking for some kind of new regime for global health research.
In DCP2 also, Barry Bloom and others, in their chapter on research, called for “non-exclusivity” and “non-rivalry” in international research. Do you think that’s called for, or is it more pie in sky?
PS: I think it’s called for. I totally support Brazil and Kenya, and Barry Bloom in his proposals. But whether the rich countries, with their industries and so on, would allow this kind of thing to happen, is another matter.
Just go back to the 1980s. The WHO at its Assembly had this fantastic resolution to ban milk foods for young infants. Who abstained? The US naturally, because the President thought it was bad for business.
So I would love this resolution to go through the WHA, but I fear it will be again one of those UN documents watered down with brackets and brackets because many governments can’t agree! But they should think globally rather than nationally. Let’s hope they do.
RHN: To end, what do you think you can achieve at the Global Forum?
PS: When President Clinton used the phrase 10/90 in one of his papers, we can’t claim we taught him that but it shows our ideas are becoming part of the currency. We are managing to stimulate more research in certain neglected areas, like the road traffic injuries network we set up; and on child health, cardiovascular diseases and mental health.
I think we are identifying areas that need more research and doing what we can. But it’s a tiny budget, a few million dollars; so I think our job is advocacy. We don’t want US$100 million. We want advocacy. Just get those who are involved to understand what needs to be done.
RHN: In this interview you’ve shown yourself to be very aware of communications – you’ve hit on phrases like 10/90 and the “three jumbo jets”. Do you think things can be achieved with the right word or two?
PS: I think it leaves impressions in people’s minds. In the end it’s what you say to people that sticks – the nugget or two that impresses. Of course it can’t be glib – it must have a foundation and a meaning – but yes, words can work!
RHN: And perhaps to act as a referee – to ask whether the money that is being spent, is spent wisely.
PS: Absolutely, that I think is our role. - RW