March 4, 2011
This article is part of a transcript of a presentation delivered at the XVIII International AIDS Conference in Vienna, Austria. The original session took place on July 21, 2010. Jump to the table of contents to see other articles in the series.
A brief but illuminating question-and-answer session followed the six presentations. The panelists spoke with audience members from several countries about topics vital to their work.
Male Nigerian HIV advocate: You are talking about policy development, evidence-based policy development, and changes happening. How have you been able to change policies? What are the actions that you have taken? What are the issues that are very critical that you have been able to address? The issue of legislation; the issue of laws: It's a big, big one, you know, in terms of it being a restriction to ensuring that people who actually want to have children do have that. How you have been able to address that challenge?
Ulrike Sonnenberg-Schwan: Maybe I can answer how we did it in Germany. To be brief, and very practical: We started to act on very different levels. The first step really was education, education, education. We started with couples. We tried to get the information about the project into the community. We tried to get the couples together, and to get them to support each other. That was the start of the project.
To get the information into the health care system, we talked to doctors. We talked to fertility specialists. I went around the whole country to find specialists to support the project, which really took years, in the beginning.
But the situation was different because, you know, I started during a time when there were no antiretrovirals. So everyone said, "How do they come to think about children?" So that was more difficult. But it's still difficult. And it takes a lot of time, also, to educate and train on very different levels. It means training fertility specialists, HIV specialists. It means getting all this information into the community. Now it's easier to use the Internet. We couldn't use that early on so much. And I think education is the most important thing. Also, educating the society, to reduce stigma and discrimination. Because it's only possible for people to plan to have a family if they are not so afraid of facing stigma. So this is another effort you have to take. And you can't do that alone.
Female gynecologist from Uganda: I want to say something little about us on the other side where, even if stigma has been fought -- as Lydia said, in TASO it may not be a problem to say, "I'm HIV positive." But when you want to have children, it's the means, it's how to help them, that is a problem. Even sperm washing is not available in Uganda. There's one unit which does assisted reproduction, and it's private.
You say that gynecologists need training. I don't think so. We have the knowledge. What's the use? The hands are tied.
Maybe I should take a step back and say that the way HIV treatment and care was introduced in most of sub-Saharan Africa was a problem. The counselors -- you'll bear with me -- are not medical people. Most of them are social scientists. Recently, a study done at a university showed that of the women who were asked about their fertility period, their fertile time, only a third knew. What information are these social scientists going to give to these women in a low-resource country, where they don't have assisted reproduction? We still have a long way to go. Minus the stigma, we still are handicapped. And I expect that if we are going to dream for anything else, I wish it would be to make a movement to say that sex, reproduction and HIV are triplets in low-resource countries. Most of our women get pregnant when they are not even aware. We have a very high, sky-high, and immediate need for contraception. But there are those who want to conceive, and then they fear talking about it. Because their government is saying, "Family planning, family planning." So what can we do about it?
Lydia Mungherera: I want to, first of all, talk to my friend in Uganda. First of all, most of our women never go to hospital. And I think that's a fact. They have their babies by a nice woman next door, who is called a traditional birth attendant, who delivers this woman. That's one of our biggest problems. We don't have women going into hospital to deliver babies. There are so many reasons. One of them is the attitude of health workers. They say they are stigmatized. Second, it's expensive. It's so far away, and they can't get to the health center. It's better to go next door.
The other thing is information. There's a lot of information which is not being given to our women. And we've got one of the worst family planning records in Africa. You know, recently, there was a story saying that Uganda's got the highest fertility. And yes, it's a very small country. The family planning was privatized. A certain private clinic company was doing family planning. It was not put in the government health center, and people were not involved. That's why recently the government launched what they call community PMTCT [prevention of mother-to-child transmission], community reproductive health services, where you have to engage communities, to go out there into the community, and really talk to these women, give them information. And still we have a problem; traditional birth attendants are still being put aside.
So I really think there's a lot which needs to be done in Uganda to make people have more information, to make people break those terrible cultures, which actually stop women from having their own choices ... like, "Do I want to have a child?" So a woman, once she's married, she must just go ahead and have children. It's a must.
We have a long way to go, and I'm hoping that we are on the road somewhere, and are getting there.
One of the policies being put into action is the community PMTCT. The other policies, which have actually been put into practice about the health workers: As I told you, we know very well that in Africa, most of our health centers do not have qualified health workers. And the issue of task shifting, and moving and training people to do work when they're not in teaching hospitals, is one critical area that needs to come from policy into program.
And the other thing is, of course, our infrastructure is terrible. However much you make policies, it won't help if they don't relate down to the ground. Also, verticalizing programs is the biggest problem. We're not integrating reproductive health, family planning, PMTCT, into other services. Because the same woman who is going to come and say, "I want to have a child": That same woman will come up the next day and say, "I want to have a Pap smear"; the same woman who comes back with TB and malaria. And the way our health centers are structured, infrastructure-wise, we don't have those divisions in our health centers.
And knowing that most of our women are in the rural area, and living very far away from health centers, we still have major problems.
Male advocate from southern Sudan: I'm coming from Southern Sudan. And Southern Sudan is a post-conflict setting. Reflecting back on your presentations: They are in the context of stable countries. And what I'm going to say is that most women in post-conflict settings; they are neglected. The services and the structures that you have highlighted are not there.
What we are facing in this type of setting is that most kids from positive-living mothers are born HIV positive. I call upon all the networks that you have highlighted -- if you can also advocate for such structures to be implemented in post-conflict settings.Be that as it may, I have picked one or two things which I can also try to implement, when I go back.
Lydia Mungherera: I'm happy you talked about post-conflict, because right now The Mama's Club is trying to reach out to mothers who are in areas of post-conflict. We do have refugees living in our countries who have come from Sudan, from countries like that. And we're trying very hard to say, "Can we reach out to those areas, and talk about this?" But many women, of course, in post-conflicts have been raped. They have children, but they didn't want to have those children. And we need to do a lot about it.
Male Ministry of Public Health worker and NGO founder from Cameroon: I would just like to say that, in Cameroon, the aspect of testing during pregnancy is not an issue anymore, because it's a regulation. If any woman delivers without knowing the HIV status in Cameroon, it means the woman never went through any antenatal clinic. Because it is mandatory for any woman who goes through an antenatal clinic to be tested for HIV.
Now, the situation is, when we talk about reproductive rights of women living with HIV: In Cameroon it's a whole issue which has been neglected. Nobody talks about what they can do to assist women who have HIV to have babies. Rather, they are doing much to stop women who have HIV to think about ever having babies. I run a foundation with a lot of women. Sometimes my interest is about young women -- young girls between the age of 18 and 30, who are still in desperate need of having their own baby. And when you tell them they are positive, there are fears. It's not about the virus. Their fear is not about any other thing. Their fear is: "Am I ever going to have a child anymore in my life?" And that question is not being answered. I must tell you with a lot of affirmity [sic] that that question is not being answered.
But I must appreciate the knowledge gained here to know that there are options. Even if the technology is not available in Cameroon, just knowing that these options do exist is a hope already for millions of women living with HIV in Cameroon, who don't yet believe that they can really have their own babies.
Now, I'll take this opportunity to share my own experience. I have an aunt who is HIV positive. She has two daughters, who are all HIV positive. And her husband had died already. Now, one thing in Cameroon is for you to prove to people that you are not HIV positive so that they don't stigmatize you. If you are a woman, you need to deliver [a baby, instead of having a C-section]. Because people know that when you are positive, you cannot deliver.
And so my aunt, after all the pressure from family members, telling her not to attempt to get a pregnancy; she got a boyfriend, and she went ahead, and she had a pregnancy, and she delivered. And when she delivered, there is something that happens in the hospital, when a woman has been asked not to breastfeed. If you just hear in the neighborhood that there is a woman who has delivered, and she is not breastfeeding; that is a whole declaration of her HIV status already. Everybody knows she is HIV positive. Because that was, now, the first effort which government put in place, to advise [HIV-positive women] not to breastfeed their babies.
I must congratulate you for bringing to the limelight the fact that there are reproductive rights and methods for women living with HIV/AIDS. What your foundations, and your organizations, should try to do is to extend this work. As my brother from Sudan just said, extend them to these developing countries. Create networks so that movements like this can come up.
I must swear to you, in Cameroon, I have never seen somebody who stood up to say, "I'm HIV positive." In any structure, meeting or gathering, it has never happened. Thank you.
This transcript has been lightly edited for clarity.