This is Challenging Neglect podcast series. We’re two university students from UCL and today we’re interviewing Dr Mary Moran. She’s the Executive Director of Policy Cures, which is a Research and Strategy Organisation, which she founded in 2004 after having worked in emergency medicine and on access to essential medicines. She’s also an expert adviser to the World Health Organisation among other organisations.

Mary, it would be great to start off with where you began with Policy Cures and what the intentions were for setting up that organisation?

MM: I set up Policy Cures ten years ago at the London School of Economics and I think what led me to do it was I had been working for Médecins Sans Frontières in an access to medicines campaign and reading a lot of material about research and development, and I just became aware that most of the stuff… what we were saying at MSF but also the industry was saying and a lot of the journals were saying that there wasn’t really much evidence for it. So there seemed to be a lot of advocacy and a lot of… you know, a lot of emotion and feeling and knowledge that something needed to be done but not much sort of neutral analysis.

So I went to the Wellcome Trust and said I understood that they’d been funding malaria research for 30 years and they still didn’t have a malaria product and I thought I could analyse what was going wrong, which was in retrospect a bit cheeky, but we did do the analysis and that was very surprising. So we went on from there to look at other kind of accepted facts to see if they’re true or not, because, you know, often they’re just not. It’s very interesting.

What kind of facts are we talking about here? Can you give us a bit more information about that?

Sure. Well, when we started the four common understandings in our field were that there was no neglected disease R&D happening and that turned out to be wrong. I mean, there’s over 300 projects in the pipeline now and there was quite a lot then when we looked at it. The second one was that industry would only be involved… you would have to pay them large amounts of money, that was how to incentivise them but companies actually said to us, no, no, it’s the opposite. We do it for PR reasons, so if you pay us we lose the PR benefit.

And the third one was that product development partnerships are very duplicated. There’s lots of them, dozens of them, and they don’t achieve much. What we found was there was actually in most cases only one for each product, one for malaria drugs, one for malaria vaccines, and so on, and that they were producing about three quarters of the R&D that was in the field. So, yes, we found that was quite a lot of money, quite a lot of projects. It was all quite new. It was being done by groups we didn’t expect and industry was participating in ways… for reasons we hadn’t understood.

Knowing all that led to very different views about who to fund and how to fund, and it was perhaps helpful having a shift away from the notion that we should just give in to industry, and it showed that there were cheaper ways of partnering that actually companies preferred and that were much better for a public health point of view. Yes, we were really very happy.

That’s very interesting. Why would you say those myths were around and maybe still persist today, the things that you uncovered?

Yes. Actually this is my… this is something that keeps me awake at night. The myths do still persist today. They’re different ones but nearly every day I read things that have me kind of tearing my hair out. I think what happened was two things really, one is that a lot of this work, this R&D gap and the lack of access mixes two things together, so it mixes together lack of access to commercial medicines where companies charge too much with a completely separate and different area of non-commercial non-profit research into Ebola or whatever it might be, malaria. They’re completely different. They’ve got different problems and different solutions and different players and when people mix them up, they get really confused thinking.

The second thing, I think, is that a lot of the thinking about neglected disease R&D stemmed out of AIDS. Now AIDS doesn’t really have an R&D gap for AIDS drugs. There’s a lot of AIDS drugs, it’s very commercial, but some of the new drugs the market’s over $10 billion a year. But what happened was there was this sense of outrage and it kind of moved across into the R&D area so there was a lot of discussion about intellectual property, a lot of anger against companies, and a lot of that was based on advocacy and emotion but without much information.

If you go to people and say how much… people would say to us nothing is being invested. Actually investment was $3.5 billion last year. Or they would say intellectual property is blocking us from making new medicines. We’ve actually reviewed it. You go and talk to people and they say, oh no, intellectual property isn’t a problem in my case. Companies give it away for free often because it’s worthless and they have to pay teams to maintain it.

So we saw last week that Novartis gave all their TB intellectual property to a public… to a product development partnership for free, you know, just handed it over and that’s actually not what we want because it was much better…it would be much better for us to have Novartis keeping that intellectual property and developing it, paying to develop it themselves in conjunction with a public partner. So we were getting all that research and knowledge for free and now what we have is this intellectual property attached with no money and expertise.

So this is the kind of confused thinking and sort of anger without analysis, and that’s never helpful. I can understand it and I suppose that’s what got me going as well in the first place, but I think at some point patients deserve…well, I think patients deserve better than that. They’re sitting there waiting to get… they want people to think through this carefully and say what’s going to work the best and not just say, oh, I don’t like companies or I don’t like patents or I don’t like public research or I don’t like academics. All of those things have been said in the literature by various groups at different times and none of them help patients. So I think we need some really calm and thoughtful analysis of what works without introducing our own preferences and prejudices.

I think that’s a very valuable insight to see how much emotions play a part in the whole discussion on NTDs. That’s very interesting to hear. And also you detail some of those arguments in your Nature article very well, so I was wondering what kind of reception you got to putting those arguments out there and trying to dispel some of the myths that are quite long standing?

Yes. Well, it’s very interesting actually. I got two completely different responses. In public there was a number of… all public pieces were critical and they were all from the advocacy groups who are often coming out of that… you know, that sort of AIDS space. AIDS was… it was absolutely awful back in the day. I remember when you actually couldn’t get medicines for people. Drug companies stopped you from getting lifesaving ARVs for people. And so a lot of the response to the article was critical and it came out of that space.

Privately… it was truly interesting. Privately 100% of the responses were supportive, including from quite senior people in WHO and in major organisations and within Government, saying we absolutely agree with you. You’re so brave you said this. Unfortunately we can’t speak out because our life’s not worth it, some of them said, and some of them said because obviously we can’t speak out because we’re part of an organisation.

So I actually think I probably need to… I’d like to see the next step where we can sort of open up this debate a bit more, because there’s a number of… there’s only a real small number of ideas that have been out there for about ten years. They haven’t made much progress, they don’t get a lot of support, but we’re not allowed to look at other alternatives. So I think… that’s what I’d like to say to people is, look, you’ve given this a great go, it’s a fantastic idea, but it’s… ten years have gone by, it’s not really getting the traction, so the best thing I would ask you to be really humble and say, look, I love my idea and I thought it would work and I’m sorry it hasn’t, and I’m now prepared to turn my eyes and my intellect to some other options that may be can get more traction and can work.

I would love to see that happen, hopefully in my lifetime, and even more hopefully in the next few years because it’s really been… the debate’s been nearly bogged down. I haven’t seen any change in ten years.

So, Mary, for our listeners can you please give a brief outline of this paper that you published in Nature so that everyone understands what we are talking about now. If you can give us a brief outline yourself and the direction that you want to take after this from that paper?

Oh, sure. Well, basically I’d say, look, I understand that there’s problems with accessing commercial and intellectual property, but we don’t have that problem in neglected diseases and the solutions you’re proposing for neglected diseases don’t fit here. They’re actually based on the commercial sector and commercial IP. So when you introduce ideas into the neglected disease sector, you think you’re helping but you’re actually doing quite a lot of harm. What we need to do is look at the real problems in the neglected disease sector which are lack of funding and lack of coordination. I think attacking IP is pointless.

IP is driven by profit. There are no profits in the non-profit diseases, it’s not even sensible, and my article tried to point that out. It said you can’t talk about trying to get real profits as a driver in neglected diseases because there aren’t any already. We can’t talk about trying to get rid of private company stranglehold on IP because, as I said before, they don’t want it. It’s worthless. There’s no evidence that IP is our issue, so we really need to start attacking the real issue for neglected disease, which is R&D.

By all means, go and attack IP issues where they belong, which is in the commercial sector. I would encourage people to pursue that themselves, but in my sector it’s not a problem. I really don’t want to see it wrongly important. It’s just messing with real solutions while people focus on this smokescreen argument.

Okay. Another clarification point here, Mary, it would be great to hear what is your definition of neglected tropical diseases because there are so many classifications there. The list goes from 17 to ten to… I’d like to see what you would classify as a neglected topic disease?

Yes, well what we do with G-FINDER is we get all those classifications you talked about at the start and we put them all beside each other. It’s clear that there’s a lot of differences and we’ve defined… what’s neglected and what’s not neglected for research purposes are different so what we’ve said for research purposes is that there’s no commercial R&D happening which means that this is a Government responsibility. So that first of all says these are the things Government should focus on. You shouldn’t focus on blood pressure because someone’s already doing that and then you look at… so that was one of our main criteria, that there’s no commercial activity. So it predominantly affects people in the developing world and there’s no market activity, so Governments need to do it.

That said, we put all the list together for G-FINDER and we sent them out to a really large panel of international experts around the world and [unclear] to the UK, and we got their consensus view on what were neglected, so based on data on how many people had them and the spread of disease, what was in the pipeline, what were the gaps, what was already happening and so on. So we think we did a pretty thorough job and we review that every ten years.

So in response to the last review a number of new diseases were added: Hepatitis C, the developing world strain; Cryptococcal Meningitis; Leptospirosis. Interestingly experts often look backwards not forwards, so they didn’t propose Ebola which obviously we would now wish it was in there but that will have to be added next year. So we put together the list based on what everyone else says and we have it reviewed by experts and people write to us and will propose diseases, often a disease they’re interested in and say what about this? And our experts will say, yes, that matches the criteria or, no, it doesn’t.

Could you tell us a bit more generally about what G-FINDER intends to do and how that survey has changed over time, and how the definitions of diseases have fed into that survey?

Well, I mean G-FINDER is funded by the Gates Foundation and essentially it’s like a big tax return. We just go out and ask everyone for all their neglected disease clients and then we collate them all and analyse them all to see who’s funding what. We hope… obviously we hope to continue it but it will only continue as long as people find it useful and as long as the Gates Foundation is willing to fund it. So we’re funded from next year and then after that we will see how it goes.

I think investors… people interested in the field find it useful because since it started one of the things that we’re really pleased to see is that the more neglected diseases have been getting a bigger share and when we started the really big diseases, that’s TB and malaria, were… you know, were getting well over 70%, nearly 80% of the total funding and over time we’ve watched it the funding has gone up. Everyone’s funding has kind of increased but it’s increased faster for some of the diseases that were more neglected – Sleeping Sickness, Chagas, Pneumonia – yes, that’s been very rewarding.

Do you know of any other similar surveys for different diseases? Is this quite novel in the whole public health area?

Yes, I think it is. I think that’s why people like it because it’s kind of the only source of that information. I have to tell you don’t ever do it. It’s so painful! You have to go and get thousands and thousands of grants and compare them all and then the funder says different to the receiver and you have to actually ring them up and check everything. It’s a lot of work. It’s quite manual to make sure it’s accurate and to make sure people only report things that are in scope [?]. Sometimes you get funny figures and you have to ring up and follow up, so it’s a ton of work. I think if we weren’t being funded to do it I don’t think we would ever voluntarily do it, but it is useful.

So I think that the one document that we would like to address is the London Declaration and how do you see policy cures and G-FINDER working within that framework? The aim is to eliminate so do you think this is plausible aim to have and how do you see your research fitting in with the rest of NTD world?

I think… I have to say I was at, you know, at this year’s meeting in Paris with the announcements and of course the Declaration covers… a lot of it doesn’t talk about R&D. It’s about rolling out existing tools and eliminating diseases with the tools we already have, and I think that fits in really well because what we try and get people to understand is that sometimes we have the tools and we should fund and use them, and sometimes we don’t have the tools and we should fund their creation, and when they’re there, then we should fund and use them as well.

So I think it’s really a lot of work. For instance, if you go to the website it says we do these three things – we make new tools, we roll out existing tools, we support immunisation. It’s really helpful to have that well rounded view because in our field there’s often competition between people that want funding for, say, their global fund or people who want funding for R&D or people who want funding for programmatic work, and it’s just like a car, you need all the four wheels or you just don’t make any progress. So from that perspective I think it’s great.

In terms of where G-FINDER fits in, we let people know, or G-FINDER let’s people know the areas that are quite badly under-funded. So you can pull out G-FINDER and you can go to an individual disease or an individual product, say hookworm vaccines, and say, okay, how much funding did they get this year, and you can have some idea from that about whether you’re actually putting in enough money to make a product or not. I suppose for really neglected tropical diseases the answer is… sadly it’s often, no, you’re not putting anywhere near enough.

So if we look at hookworm funding… funding for hookworm vaccines, if we look at the 2012 funding, it’s only $4 million. You know, the vaccine costs probably $150 million to make, so it really helps people see that we’re not going to get that unless e make a big effort, I think.

So it’s a great indicator for people… if they want to achieve these aims you need to put the resources in here and it’s a great way of seeing where those resources lack?

Yes. I mean it’s quite good at showing gaps. Some of these diseases are micro funded. You know, you have less than $0.01 million, that kind of thing, so… and there’s a whole bunch of diseases… lots of tropical diseases where there’s whole years where there’s no funding at all. We just have to mark it blank.

One of the things we did want to do, they’ve done a projection of how much money they would need for the NTD campaign and they didn’t include R&D in it, so I had meant to approach them and say obviously you don’t need R&D for many of the diseases, but where you do that figure should be in there so people understand the thinking about it now, they understand what’s going to be needed. Because the figures are pretty scary if you come on them, $150 million as a one off, but of course that’s spread over the development time of the vaccine, so you might need to show them for each year of the development. It’s very helpful if people understand now what they’re up for.

So, Mary, can you tell us a little bit more about how you started from medicine and ended up with Policy Cures because this is a big sort of step in… or trajectory that we’re not very familiar with. And also what you might have brought in from diplomacy and your experience in the field. I think it would be great to hear a little bit about that.

Actually that’s… I think the best thing for me was that I had worked outside the field before. So when I was a diplomat I covered the environment and, of course, in the environment sector there’s lots of really interesting ways of getting companies to do things they don’t want to do. You know, there’s carbon trading and there’s a whole range of different taxes and there’s swaps and there’s Green auctions and, you know, any number of things. So when I joined the health field and I joined Médecins Sans Frontières, it was, so okay, what are the sorts of cool ideas to get companies to make the drugs we want them to make and there’s no new ideas.

So a number of US academics said, give them a billion dollars which I thought was… I don’t know. That’s the kind of thing my mother would come up with and I said, I’m sure we can do better than that. I’m sure there’s some more interesting ideas we can bring in from other fields and so I think that’s probably what… I mean, originally I was a doctor and so I’ve kind of come full circle, but via these other areas where there’s much more innovation, there’s much more of a sense… industry has more of a sense that they have to do something differently, I think, and there’s more effort put into policies to make that happen because it’s quite clear we can’t all keep polluting and that we need to do something that works.

In health it’s almost like that realisation hasn’t hit home yet. We’re still kind of footling around a little bit. I mean, the main idea in our field at the moment is this idea for an R&D treaty. That would mandate countries to give a percentage of their GDP to a central committee in WHO probably to try and set up.

Are you behind that? Would you support it?

A Government pharmaceutical industry, but I don’t think that’s going to work and I think we need some other ideas that fit in more with how the world operates.

Great. Well, Mary, thank you very much. I think we’re coming to the end of our interview unless… if you want to add anything to our conversation, we’ll thank you and looking forward to the future of Policy Cures.