Healthy Skepticism Library item: 876

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Publication type: news

Meet the people shaping the future of science: Cures before cash
Interview New Scientist 2004 Sep 4

Full text:

Victoria Hale is a rare breed: a drug company chief on a mission to vanquish diseases of the developing world. In 2000, disillusioned with the pharmaceutical industry, she launched America’s first non-profit drug company. She tells Michael Bond how she persuaded the industry to part with undeveloped drugs that her venture is now trying to turn into cures for some of the world’s most lethal diseases

A non-profit drugs company sounds an unlikely idea. How did you come up with it?

When I was with the Food and Drug Administration (FDA) I learned about “orphan” diseases, defined as diseases that fewer than 200,000 people in the US suffer from. I thought it strange that outside the US, some of these diseases are enormous. For instance, there are about 1000 cases of malaria in the US, and 500 or 600 million cases worldwide. You need to take your American eyeglasses off and consider the whole world. I wanted to do something about the fact that these were not orphan diseases at all – these were devastating diseases that had an impact on the economies of entire regions, and on political stability.

In addition, the movement of the health industry into lifestyle issues such as impotence, baldness and memory loss was a real signal to me. I did not get my PhD to work on these issues knowing that there were huge diseases out there that very few people were working on. There were people working in global health, but they had so few resources and they didn’t have a drug company. There was no new drug R&D for the diseases of the world’s poorest people. That was the big gap.

How did you go about filling it?

I set out to meet the people who were investigating these diseases, to see patients and to commit myself to it. I felt that if I wasn’t deeply personally committed then I wouldn’t be able to do it. So I travelled quite a bit.

Where did you travel?

India and Bangladesh mostly. Very poor places which weren’t on the tourist map then.

What were your impressions of these places?

Although I grew up as a middle-class American in Baltimore, I knew inner-city poverty, American poverty. But that’s nothing like the poverty in slums around the world, with millions of people living on top of each other, or the poverty of the rural poor who have so few resources and whose main efforts every day are to find enough food to eat. So it was an extreme awakening. I took my eldest son with me to Bangladesh (he was 8, and is now 12), and he was changed by the experience. I collapsed in tears when I left Bihar in India after the first trip. It was just so overwhelming. At that point I committed to this seriously. I didn’t know if the world was ready for a non-profit pharmaceutical company. But I was ready to give 110 per cent to it.

What is your mission?

Our aim is to identify undervalued chemicals or drugs that were created by academics or pharmaceutical companies but are not being developed, match them with very important diseases in the developing world, put them through clinical trials, get regulatory approval, and distribute them to the people who need them.

Was it daunting to suddenly be heading up your own drugs company?

When I wrote the strategic plan for OneWorld Health I had to step back because it frightened me a bit. At that time I saw it as me taking on sizeable global health problems. How would I ever make it succeed? Then two years went by and my husband and I were fortunate in having a successful consultancy business and accumulating enough money to provide seed funding for OneWorld Health. In addition, I had matured to the point where I knew the question was not whether it would be successful and was I going to change the world, it was whether I was willing to commit everything I had to make it work. It was a question of courage. It was something that had been growing in me all of my professional life.

What were people’s reactions when you told them what you were trying to do?

The majority of people said, “You’re doing what?” That included the tax authority. It took 10 months to get our non-profit status. People couldn’t understand why the world needed a non-profit pharmaceutical company – or rather, why America needed one. But we are not doing this for Americans. We’re using technology that otherwise will just sit on a shelf to benefit others around the world. I’m very proud to be a pharmaceutical scientist and I love my industry, I just think the world needs a new model to get to some of the poorest people, and those that have the most need. We founded the company to develop drugs for diseases that other companies never would. We’re not going after diabetes or cancer. I believe that we will do our job so well that in the future companies will step forward and want to take our drugs and distribute them throughout the world.

How do you persuade the drug companies to give you their undeveloped drugs?

You just need to meet the right person in the right organisation and then it can happen. I don’t stop until it’s done. I’m pretty passionate and persistent and I apply all my energy. Sometimes it’s challenging and I have to negotiate, argue and persuade. Other times companies have been really willing. Right now we have an over-abundance of drug opportunities – about 200 – and we don’t have time to review them all. They come from academia, industry and companies, and from individuals who own the rights.

You must have learned a lot about how to get people to give.

There are many people who want to give but don’t know how, or whom to give to. Americans in particular are becoming more aware of the iniquities that exist around the world, and Americans are extremely philanthropic. The problem when it comes to global health is that most of the globe is a mystery to Americans. That’s an issue of education, and convincing people that they can have an impact around the globe. If they’re willing to fund childhood education in the US, why not in a country or two in Africa? The impact there could be incredible. So we’re helping people become more acquainted with the rest of the world.

Was your experience at the FDA in campaigning to get women and minorities included in clinical trials helpful in your current role?

It absolutely was. The lesson was that if you’re very committed and you’re in the right place, and you put together a core group that’s very passionate, then you can make big things happen.

What diseases are you working on?

Number one is leishmaniasis. Paromomycin, our treatment for this disease, is now completing phase III of clinical trials in India. We had to get the rights to that drug from the WHO. It took many trips and almost two years to get a memorandum of understanding with them. I don’t know why it took so long, probably because leishmaniasis was a low priority. Our second funded programme is for Chagas disease, which is found in Mexico and Central and South America. And our third and fourth programmes, which we’re still seeking funding for, are in paediatric diarrhoea and malaria. Leishmaniasis, Chagas and malaria are all parasitic diseases. Parasites and poverty are inextricably linked, yet big pharma has not really been looking at parasite-borne diseases since the 1960s. Some companies are interested in malaria, but this is malaria for westerners, so it is about prevention, not treatment.

How serious are these diseases?

Take leishmaniasis, which kills 200,000 people every year – more than the number of people killed by strokes in the US. The two most common types are the skin form that British and US soldiers are coming back from Iraq with, which affects around 12 million people, and the internal form, which affects 1.5 million and can be fatal. Chagas disease is the leading cause of heart failure in Latin America. It affects between 16 and 18 million people, and around 50,000 die of it each year. Paediatric diarrhoea will kill a child in a day if you aren’t actively feeding the baby salts and water. For 2 million babies a year diarrhoea is the primary cause of death, and it is involved in the deaths of between 4 and 6 million people every year. Isn’t that a shame, in our century?

Does it trouble you that pharmaceutical companies ignore these diseases?

The problem is the industry is so profitable, so these diseases don’t make it onto the radar. The people who have these diseases are not in sight because they cannot pay. But we can benefit from the wealth of the industry, because they have such a huge R&D machine. They make so many more discoveries than they can possibly use.

Would you like to see more compassion in the pharmaceutical industry?

Yes, I would. There are areas of R&D where people are very passionate and they do know who they are healing. In some companies that develop treatments for cancer, researchers have deep compassion for their cancer patients. That is also true for people who work in infectious diseases. The problem is that many of the programmes the drug industry is developing are not concerned with saving lives any more, but instead with improving the quality of life. In some cases that’s OK. But I have spoken to many scientists, physicians and other professionals in the industry who say, “I didn’t think it would be like this. I wanted to be working on something that could change the world.” Hundreds of scientists who feel like this have asked to participate. They want to get back to why they entered this profession.

You have received a lot of your funding from the Bill and Melinda Gates Foundation. Have you met them?

I met Bill Gates at the World Economics Forum in Davos this year. We talked for less then 10 minutes and then we were swarmed with people. There were so many others who wanted to talk to him, we didn’t get a chance to finish our conversation. The Gates Foundation has 80 to 90 per cent of its global health investments in vaccines. We are working together with them to identify great opportunities for curing diseases with drugs.

Is your campaigning zeal a family trait?

No. My sisters initially believed I came from Mars. And my parents don’t really understand what I do. I think I’ve always been a fighter. I’ve always reacted strongly to seeing pain and suffering in people or animals. It’s visceral for me and I take it to heart. I managed to work that into my professional path.

What will you do when you’ve conquered infectious diseases?

The beauty and curse of infectious diseases is that you always need to develop new therapies, so in many ways our work will never be done. The less obvious answer is that I’m very passionate about women’s health and I would like to have an arm of OneWorld Health committed to addressing the health of women around the globe. Having been on many trips and seen how many women around the world live, I know there are many ways we can ease their lives. Drugs won’t solve everything – there are many cultural issues that have an impact on women and affect health. I’m especially interested in pregnant women – as a patient population they have always been close to my heart. I’ve been one myself twice.