Interview: HIV/AIDS is more a social, legal, rights issue than health issue

On World AIDS Day, Mada Masr sits with Abdo Abu El Ella, an activist who has been engaged in working on HIV/AIDS over the past decade.

Naira Antoun: I read that according to the United Nations, Egypt belongs to one of only two regions in the world with rising HIV epidemics, so is that because the incidence of HIV/AIDS is growing or a reflection of more testing?

Abdo Abu El Ella: In my opinion, it’s about testing being more available, with fewer restrictions and with less fear. Actually we can see these higher figures as a result of the efforts in the past 10 years of organizations working on the issue and that there are more of them now, though still not many.

And it’s the result of more targeted programs. Egypt is a low-incidence country, so directing efforts toward the general population is not necessarily the most appropriate strategy. You need to work with the populations most affected or most at risk, so there is more targeted testing, which has allowed the numbers to more clearly reflect the true incidence of HIV/AIDS.

NA: More targeted on the part of whom?

AAE: The National Aids Program and civil society.

NA: The main actors are the National Aids program, civil society and UNAIDS?

AAE: Exactly.

NA: What is their relationship?

AAE: Actually the partnership on HIV/AIDS is one of the most successful. The National AIDS Strategy is always drafted in partnership with civil society. We have constructive dialogue with the National Aids Program under the Health Ministry, whose role is more about coordination of the national response to HIV/AIDS than service provision.

We are always invited to participate in whatever dialogue is taking place, whether about strategic goals, funding, service provision, service evaluation, identifying gaps and so on. And often I am invited as Abdo, an activist, not someone representing an organization.

I didn’t experience such involvement in other issues, such as housing, which I have also worked on for several years. For example, one of the problems with these dialogues is that the civil society representatives may not be representative. So maybe it comes back to the fact that there are few organizations working on the national AIDS response so those present are indeed representative of who is working on the issue and building a partnership is easier.

Probably the presence of UNAIDS is also a factor. They are keen on the participation of different actors from civil society and people living with HIV/AIDS.

NA: You mentioned work being more targeted toward at risk groups. Could you say more about who they are?

AAE: Women who are vulnerable to HIV/AIDS, men who are vulnerable to HIV/AIDS… I don’t really like to label these groups, as it adds to the stigma. Which is what happened from when HIV/AIDS first appeared in Egypt. It became seen as the “gay disease,” which is not true — everyone can be at risk of HIV but there are groups that for various reasons are more vulnerable than others.

And these people are often — but not necessarily — already stigmatized groups, so that’s why I am anxious about the labelling.

NA: A lot seems to relate to stigma…

AAE: Yes, stigma and rights. People are often scared of accessing service providers, of revealing their status, even to family members, because they risk exclusion.

Let’s say a woman has a husband who engages in risky behavior, for example drug abuse, but because of gendered power dynamics she is not able to negotiate a safe relationship. So a woman in this situation is very vulnerable. Even if you give her the information, because of the gendered dynamics, there is little she can do.

Even if she knows her husband is engaging in risky behavior, she may be scared to go to service providers because she will be afraid of being judged: because of the stigma attached to the disease — that it is associated by society with sexual behaviors — she will face ostracization because the first assumption will be that she engaged in behavior that society condemns. If she has kids they could be taken away from her, she could be thrown out of her home or dismissed from work.

NA: What do initiatives do in a case like this?

AAE: There are services and so on, but also significant legal support. People often don’t think of legal issues as being relevant to HIV/AIDS, seeing it as a health issue, but it’s a social and rights issue. So there is legal support for cases, such as being thrown out of home or work.

NA: There was a case this year, a legal victory that you can’t be sacked if HIV positive?

AAE: Yes, I worked on that case. A man had been dismissed from his job when it became known that he was carrying the virus and an NGO took on the case. They presented expert and medical evidence that HIV is not a workplace issue and can’t be transmitted through ordinary work relations. We were surprised by the outcome: the judge actually stated that HIV/AIDS can’t be transmitted in ordinary work relations in his reasoning of the ruling, that it isn’t a workplace issue, and as such can’t be a basis for dismissal. The employer is currently preparing an appeal.

It’s an important ruling because it legally lays the basis for certain principles including the right to work of those living with HIV/AIDS, which is one of the biggest issues they face as people are often dismissed from work when their status becomes known. This is often because of the unfounded fear that the virus will spread to coworkers, but also fear that the place of work will be labelled as a place where there is HIV/AIDS, taking us back to stigma again.

NA: And is there stigma on the part of doctors?

AAE: A lot. Those working in the health sector should understand the virus and know that if they treat someone following basic safety procedures, they will be safe. But despite this medical knowledge, stigma is very high in health settings.

There are several cases of refusal to provide treatment to patients who are HIV positive, often for non-HIV/AIDS diseases.

Stigma in the health sector is one of the most painful issues and it’s hard to address. The issue isn’t the specialized doctors, but across the board. Also it’s difficult to make a legal intervention, as you can’t usually find evidence that the doctor refused to provide treatment or that the patient’s HIV status was the reason.

There is some work being done in a few hospitals to create a supportive environment for people living with HIV/AIDS to access healthcare, but it’s still very modest.

NA: What got you involved in working on HIV /AIDS?

AAE: Some years ago, a young man came to me at the organization I was working for, from a very poor family, about 19 years old, and he had HIV/AIDS. I didn’t really know anything about it to be honest. The boy needed to be in an intensive care unit for a week for some antibiotic treatment. We went around several hospitals, public and private, and they all refused him treatment until he died.

I felt there was really something wrong. Many of these people are already socially or economically marginalized, so they don’t have the power to speak – though some have started to – and then if you add society’s stigma toward the disease itself, you can see why there aren’t demonstrations in front of the ministry demanding their rights, or in front of a hospital that has refused a patient treatment.

I work on issues to do with justice and equality, and if you talk about justice and equality, people living with HIV/AIDS are a key population who need such work, even if they’re small in number.

Naira Antoun 

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