Interactive Fellows Friday Feature!
Join the conversation by answering Fellows’ weekly questions via Facebook. This week, Shereen asks:
Have you or someone you know encountered discrimination because of HIV or related risk-behaviors? Do you know anyone who has been targeted by the police on these grounds? Or denied healthcare? I’d like to hear your experiences–what happened, what were the consequences and what you’d like to see change to improve the lives of those living with HIV/AIDS and those at greatest risk of infection.
Click here to respond!
Tell us about your recent appointment to the Global Commission on HIV and the Law.
In June, the United Nations Development Programme launched the Global Commission on HIV and the Law to look at legal frameworks around the world affecting the welfare of people living with HIV and those at greatest risk of infection.
The Commission has fourteen members from across the globe, comprising the great and the good — present company excluded! It’s chaired by former President Cardoso of Brazil, and it includes legal experts, parliamentarians and human rights advocates. I had the good fortune to be chosen to sit on the Commission. They also very kindly invited me to serve as Vice Chair, which is a tremendous opportunity and an exciting challenge.
The Commission has several elements. One is trying to assemble the evidence base on the interaction between law and HIV. Key to that process is a series of regional dialogues, in which the Commission will be soliciting submissions from NGOs, legal experts, policymakers among others — local and international — to understand how the law plays out on the ground. The Commission is scheduled to produce its final report at the end of next year.
The law might seem like a very technical, niche aspect of dealing with the global HIV epidemic. But the law is both a reflection, and an engine, of social attitudes. There is enormous stigma and discrimination associated with HIV in many parts of the world. Change the law, and you can help to change social attitudes — not overnight, but with time and a lot of effort to translate legal reform from the books into everyday life. So this Commission is a wonderful opportunity to galvanize attention and interest in this important tool of social change.
When it comes to slowing HIV, what types of laws are most significant?
There are three main areas the Commission is looking at. One are laws that criminalize or discriminate against people living with HIV, and people who are at highest risk of contracting HIV.
Area number two is looking at the laws that perpetuate violence and discrimination against women. We know that in developing countries in particular, women are at extremely high risk of HIV. They are often unable to negotiate safe sex, for example. They’re the most vulnerable, particularly economically, and therefore the least able to protect themselves.
And the third element is access to medicine and healthcare. Right now the number of people living with HIV is around 33 million, which is actually the largest number ever. That may sound daunting, but the reason we have more people living with HIV is that more people are living with, as opposed to dying of, AIDS.
That has a lot to do with access to medicine. We now have about 5 million people in the world who are on antiretroviral therapy. And that’s terrific. That’s more than ten times the number who were on it in 2003. But the problem is that a lot of people are left out.
There are a number of reasons for this, but one of them is intellectual property, and in particular international treaties which govern intellectual property rights (IPR). These have a big impact on the price and availability of medicine, and therefore affect the ability of poor countries, in particular, to provide medicine for their citizens. So that’s another component of the Commission’s work: looking at these intellectual property laws. There are flexibilities built into international intellectual property treaties, but for political reasons, very often poor countries are unable to utilize them.
A related aspect the Commission intends to examine is discrimination in healthcare delivery. It’s sadly the case that people who have HIV are, in many parts of the world, denied the same level of treatment as those who are uninfected. What the law can do to afford them better care — which ultimately benefits both patient and healthcare provider — is another element of our work.
What are some examples of these discriminatory laws?
There is evidence from some Caribbean countries where same-sex activity is not criminalized, that you actually find lower rates of HIV infection among men having sex with men than in neighboring countries which legally prohibit these behaviors. Now, do we see lower rates of infection because they have a more open stance on same-sex activity? We don’t know. The evidence is suggestive, but inconclusive. When you criminalize a behavior, you drive it underground. You don’t stop people from having same-sex relations. What you do is make them furtive, rushed … when people are acting under such pressure, they are unlikely to use protection.
Another example are countries where, if you are a migrant and you are discovered to be HIV-positive, you are deported. Policy makers think they are protecting their citizens by excluding someone with HIV. But the reality is that actually they are making the population-at-large more vulnerable. If people think they are going to lose their livelihood because they are HIV-positive, they’re unlikely to get themselves tested. And if they have suspicions that they are HIV-positive, they are unlikely to come forward and share the information with a sexual partner or anyone else. It’s a similar thing with injecting drug use. There are many countries in the world in which drug possession is illegal and substitution therapy is not available. The belief is that, “Well, if we just criminalize it, if we just put people in prison, we’ll keep them off the streets, and this will get rid of the problem.” It doesn’t. All you do is shift the challenge of HIV from one setting, in open society, to another setting, which is in prison and which eventually circulates back into society-at-large.
These laws are based on very deep-seated beliefs, and changing them is going to require tremendous evidence and advocacy. That is why the Commission is so valuable. Plus, the Commissioners speak with depths of experience from their respective regions. The Commission’s intent is not to corner policymakers, but to present them with options for change. It’s very difficult to get movement on a lot of these issues. HIV is a very sensitive subject because it touches on aspects of life that many cultures, and governments, would rather not touch with a barge pole.
Tell us about the experience you’re bringing to the Commission.
My background is as a journalist. I was a health care correspondent at the Economist for many years. I was also a presenter with Al Jazeera English, and I have PhD in molecular immunology from University of Cambridge. When I was at the Economist, part of my remit was covering the global AIDS epidemic. Because of my personal connection to the Arab world — I’m half-Egyptian — I became interested in HIV in the Arab world. That was around 2003-2004.
At that time it appeared that, in a world awash in HIV, the Arab world was untouched. Because of the way data was being gathered, there seemed to be hardly any cases. I wondered, “Well, what’s going on?” From there, as a journalist I started to investigate the situation of HIV in the Arab world. I became so interested that I actually decided to stream out of journalism and to focus on this issue.
Generally speaking, in the Arab region, there is considerable reticence, not just about sexuality, but in general about the behaviors that are associated with HIV, like injecting drug use. And yet these behaviors exist.
And the challenge, really, is to be able to find a space to confront these issues openly and to admit that, “Yes, we have commercial sex work in the region. Yes, we have men having sex with men. Yes, we have injecting drug users.” Once we admit that, then the challenge is to find a way to mitigate the broader public health risks associated with these behaviors. And we need to do it in a way that also takes into account the conservative religious discourse in the Arab world. It’s a very, very difficult balancing act for anyone working in this space.
In Islam, which is the majority religion in the area, the only accepted context for sexual behavior is marriage. Religiously-sanctioned, officially-recognized, family-approved marriage. And everything else is considered to be haram, forbidden. That’s problematic because we now have a rising age of marriage in many countries in the Arab region. Young people in some parts of the Arab world are unable to marry until their late twenties or beyond, largely for financial reasons, yet they have very little scope for sexual expression. And yet we know from various studies that yes, indeed, young people are having sex outside of marriage. But because there isn’t much openness to discuss these issues, whether it’s sexual education or condom use in the context of HIV, young people are exposed to risks. “Just say no” doesn’t cut it for young people in the region anymore.
Besides the Commission, what else are you working on?
I’m a visiting scholar and a consultant on some of the academic programs at Effat University, a women’s college in Jeddah, Saudi Arabia. It’s a really interesting initiative and is making wonderful strides in giving young women in the country educational opportunities they might not otherwise have.
Effat University was established by Queen Effat, wife of King Faisal Bin Abdul Aziz. Under the presidency of an incredibly dynamic Saudi woman, Dr. Haifa Reda Jamal Al Lail, it’s become an extraordinarily lively place, and they have programs that were traditionally not seen as subjects that women should study. Architecture, engineering and computer science, for example, are all offered at Effat University. Effat also has lots of international partnerships with universities in Europe and the States.
It’s been terrific interacting with them, because one begins to see a face of Saudi Arabia which is not as familiar to the outside world.
Your experiences of the changing Arab world led to your TEDU Talk. How does your talk relate to your current work?
My TEDU Talk was taking issue with this whole question of the clash of civilizations. The point I was trying to make is that actually it’s not a clash of civilizations, nor is it a homogeneous mash of civilizations where East and West get mixed together. It’s more, as I called it, a “mesh” of civilizations in which you see the strands of different cultures intertwining to produce something that is neither conventionally Western in its form, nor traditionally Islamic.
Very often people in the Arab world will not talk about issues related to vulnerability to HIV, like same sex behavior, for example, because they believe it is haram or ayeb, shameful. But I would say that there are possibilities within Arab culture and within Islam to find accommodation. We can find some space in which to address these issues, without violating deeply-held norms and not necessarily by following the trail blazed by the West.
In fact, across the Arab region, there are lots of young people who are finding solutions to social problems. Not just in the context of HIV, but other issues as well. While they acknowledge the way that western countries have dealt with some of these issues, they also appreciate the different contexts of the Arab world, and are finding other ways forward.
There are many aspiring social entrepreneurs out there who are trying to take their passion and ideas to the next level. What is one piece of advice you would give to them based on your own experiences and successes? Learn more about how to become a great social entrepreneur from all of the TED Fellows on the Case Foundation blog.
Because I work in the field of health and social welfare, I come in contact with a lot of social entrepreneurs in the Arab region. Social entrepreneurship has not been very well understood in the Arab world because it’s not really private sector, and it’s not a traditional charity or an NGO, so what is it exactly? It’s been very hard for social entrepreneurs in the region to position themselves.
That being said, there’s actually a very lively social entrepreneurship scene in the Arab region which has emerged over the last couple of years.
The advice I would give is probably best understood in the context of the challenges that social entrepreneurs in the Arab world face: among them, enormous amounts of government red tape, lack of technical support and lack of access to legal advice. And one of the biggest problems is that young people are not encouraged to take risks in their professional lives.
So my advice to them (easier said than done, I admit) is don’t be afraid to take risks. There is pressure from society in general, and family in particular, to conform, to follow well-worn paths. But there is an emerging group of people like you who are taking risks, who are doing what many people say is the impossible. It’s a badge of honor to be taking that plunge, although it may not seem so in mid-flight.
That being said, I would also urge a combination of both patience and pragmatism, because there are no quick returns in social entrepreneurship in the Arab region. So you need to be in it for the long haul. Calibrate your ambition to reality, and find satisfaction in small successes over the long term.
Has TED been a catalyst for your work?
Absolutely. I was astonished by the connectivity that TED provides. I gave a tiny TEDU talk, but it’s amazing the amount of interest five minutes and a couple of Barbies can generate. In fact, I’ve been interacting with a number of researchers who are doing work on cultural exchange between the Arab world and the West.
Through the Fellowship I was able to attend TED Global 2009. That was a wonderful experience on so many levels. I’m still in touch with a number of groups I met there, and I’ve been introducing them to other groups in the Arab region. It’s great to be a part of increasing the connectivity.
In terms of the Fellowship per se, the online networking is excellent. I follow the Posterous postings, and it keeps me abreast of developments in fields which are so far removed from my own. There was a Fellows interview with Kellee Santiago, for example, who is working on video games. Again, it’s a field that is so far removed from my own but is very, very interesting.
Another great thing is learning about Fellows with similar interests. For example, I read on one of the postings from Nitin Rao of a new LGBT organization starting in India. Well, from the perspective of the Commission, that’s great. We need to talk. Because these are exactly the sort of groups we would like to hear from.
Then there’s the interview of Sanjukta Basu, who is a blogger from India. It was extraordinary reading her experiences of blogging, because sitting in the Arab world, we often feel cut off, despite networking and Facebook and all that. I read about her experiences and thought, “My God! This is what’s happening in the Arab region as well. Wouldn’t it be great if we could connect her to some of the young, female Arab bloggers I know.”
For the work of the Commission, I would love to be able to connect with TED Fellows who are interested in our project, and also the broader TED community, because that is really what will make the difference to the Commission’s work: our interaction with people on the ground.