Bill Simmons joined American Leprosy Missions in 2010 to bring care and a cure to those affected by leprosy. His focus is on those suffering from curable illnesses like leprosy and the societal persecution that often accompanies these types of diseases. Bill is also Vice President of the ILEP Board of Directors, an advisory board member for the Nippon Foundation’s funding of the WHO Global Leprosy Program, a founding and executive member of the Leprosy Research Initiative and the Chair of the Global Partnership for Zero Leprosy.
As a leader in the leprosy world, Bill’s job sees him guarding people’s right to health and fighting for equal rights and participation for people affected by leprosy.
Tell me about your relationship with leprosy.
Leprosy for me is a gateway to people. When I think about leprosy or Hansen’s disease I don’t focus solely on the disease. I try to think about it from the perspective of people, and people in communities who face a host of challenges. Leprosy, or Hansen’s disease, is one disease among many, but when I think about leprosy I think about what is it in a community, especially in the impact of the disease that is creating a situation where people are neglected and marginalised.
And that’s actually where my heart is. My desire to see change in the world is centred around people who find themselves suffering from marginalisation and stigma caused by a host of high-morbidity, neglected tropical diseases. Hansen’s disease is foremost among that group in my mind, but just to say that I don’t think of leprosy as only Hansen’s disease. I think of leprosy as those things that lead to tragic outcomes for people in communities because of disease, so, when I think of leprosy, I think of people who are neglected.
I also think that it’s at the heart of what we do — we can fight this bacteria all we want but at the end of the day what we do is about people who are marginalised and who are neglected and are robbed of their dignity as human beings. What we do matters to people and I think it’s important to have taken people into account in our work and to know that we did that. That we can attest to that. That’s the thing I would hope that we can all say. Knowing that we honour the people that we were seeking to serve.
You mentioned stigma, which can ruin lives. But we also want to keep focus on transmission and disability around leprosy. Why do you think it is important to attend to all three?
Well if we’re talking about stigma, I think zero stigma is a wonderful notional aspiration. It is also probably unlikely to ever be truly attained while human beings are still alive. The stigma resides in people’s hearts and is not easy to overcome, but there are things that create stigma that can be overcome that I think we can a hundred percent achieve. I’m talking about achieving a hundred percent equal rights, a hundred percent participation. These are the types of things that are critical for people to have control of their own outcomes, in their lives.
In the United States, I liken this to the Civil Rights Movement. The progress toward equal rights in this country was a long one and yet today we live in a culture where in the US people have equal rights, and they have access to 100% participation, but it hasn’t gotten rid of or eliminated a hundred percent of the stigma or the bias or the racism in people’s hearts. That’s a much longer battle to be fought and one that’s definitely worth fighting.
I think the same thing is true in leprosy, but the place we have to pass through initially, before we can ever dream of eroding stigma over time, is to start with ensuring that people everywhere, who have had Hansen’s disease, have equal rights and equal opportunity for participation in their communities and in their political and governing systems. That is critical. It is one of the first aspects of equality of human rights, and that’s where my hope lies initially. It would be a huge step in eroding stigma around the world, accomplishing those two things.
What about zero transmission and zero disability?
Transmission and disability are obviously two entangled aspects of Hansen’s disease. If we didn’t have new cases, new instances of the disease, the math would say there would be no new disability in leprosy. The question is, can we stop transmission of the disease all together? The answer to that is yes. Yes, we can do that, and it has been done in places around the world already. There are many countries in the world that have no leprosy today because there’s no longer any transmission of the disease, so we know that it is possible to reach zero transmission in countries and that’s been done without the vaccine and without chemoprophylaxis.
Most of the western world today no longer has any transmission of leprosy and that was accomplished without new tools for ending transmission. We know that we can get to zero even without new tools. But we also know that, in places that are highly endemic, to make a radical change, a tool is the best way to change the inevitability of transmission.
I think about the fact that it’s inevitable that at some point leprosy will disappear. But there will be far too many lives impacted and far too many people who will live their entire lives with stigma and disability for us to wait for what’s inevitable.
You talk about hope really clearly. What hopeful trends do you see emerging?
Well, the trends in the technology space are changing so quickly that I think it’s difficult to fully understand what the next 10 or 20 years are going to be like. But it is a hopeful space, because I think that the changes in technology and the rapid application across multiple sectors is going to enable those solutions to reach people who need them the most, in the most cost-effective way. Much more quickly than could have been imagined in the past. One aspect that I think is driving these changes for tools down to people in need is actually the combination of market-based solutions with solutions that reach the underserved and low-impact markets.
I think there are trends, things that are happening around this idea of translational research, which is not a new one. But I think that it’s becoming more central to the way leprosy research is done — exploring the idea of how can we track the time from the lab to the person. On the ground, I think one of the things that’s happening is how people have started to take control of their own situation. And we see, for example in northern India, we see that women are on the front edge of leading change in their community. This gets at the heart of a lot of issues people care about – the rights of women combined with the rights of people with disease. I think we see a change, in that service delivery and programmes that help people will increasingly be programmes that are implemented by women.
What are you looking at that excites you, that makes you get up in the morning?
The same thing that’s been true for the past 10 years, that there are real people that are impacted by the work that we do. Not necessarily that they are impacted directly today, but I know that what we do every day does reach people around the world in some way. That makes it worth getting up every morning, to be a part of that. I do think that we have the opportunity today to be on the edge of radically reducing the incidence of leprosy in our lifetime. I do think that we are on the front end of being able to see the active number of new cases each year being reduced from where it has been to less than 25,000 in the next 20 to 30 years. I think that can happen.
What I am excited about in the sphere of partnerships is that none of that progress will be accomplished without partnerships. When you’re talking about a rare disease like leprosy in the scheme of things, it’s a difficult task to think that we’re going to find a way to get in front of the incidence of leprosy. The opportunity for any partnership, is to find new ways to work differently so that you can speed up the outcomes. To me, that’s the same concept of how do we speed up the inevitable? And I think that’s what partnership and collaboration are about.
Is there one thing that you think is really important that you feel other people are not paying enough attention to?
I think there’s two things. One is I think that with Alice Cruz, the UN Special Rapporteur, the human rights-based focus in leprosy is an angle of attack. I think it is a new way to think about aligning people at a global level around the rights of people affected and the ongoing issues of how people affected by leprosy are treated.
I think that’s important because we’ve talked about stigma and the rights of people affected in many ways for years in this community. But there’s something different about how we’re talking about it from a human rights-based approach and not a medical disease sort of approach. I think that is worth continuing to explore and add fuel to that fire.
I think that if we can continue to galvanise people affected around rights, that continues to infuse them with financial and other support, to facilitate their voice becoming more and more cohesive. I think that’s a great way to move something forward in a new way. Maybe accelerating it in a new way. I certainly think that Alice and her role at the UN helped to raise that point.
The other thing I think people need to be aware of is that in the Neglected Tropical Disease space, for years mass drug administration campaigns have been driving most of the funding and activity around the world. What many people are not aware of is that most of those mass drug administration campaigns have reached or are near to reaching their targets and when that happens both the work of all the organisations that have been engaged and doing that drug administration, as well as the governments funding it, won’t have anything to fund anymore. What happens then? It’s an interesting question around what government funding goes into when there’s no longer an easy solution. I don’t know the answer, but I know that it’s an area that I think is worth paying attention to because in the next two to four years, it’s going to be a radical change in the landscape globally.
**Conversation edited for publication**