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.
Anna Zakowicz, Lithuania
Anna Zakowicz is the Chair of European AIDS Treatment Group, a member of European Community Advisory Board and Policy Working Group. She is a community activist, advocate for injecting drug users and minorities to obtain equal access to health care and increased access to HIV information. Read her full bio.
In Lithuania, a small country with a relatively low and heavily male HIV prevalence rate, issues affecting HIV-positive women get little attention. This is evidenced by the fact that there is only one HIV-knowledgeable gynecologist in the country -- to say nothing of the stigma these women face, being predominantly either drug users or the partner of a drug user. "We must come to the basics, and we must start to rethink the whole system," says HIV-positive mother and activist Anna Zakowicz.
I have been talking about IDUs [injection drug users], pregnancy planning, and sexual rights of women who use drugs and who are HIV positive. And actually, I'm a drug user, and I'm an HIV-positive person. I also work with an organization that is based in Lithuania, which is called Demetra.
If we look at the epidemic in Lithuania: Lithuania is a country with a population of 3.5 million. When we look at the HIV prevalence in Lithuania, it's quite small. It's around 1,500 people. As you can see, it's mostly men who inject drugs. And it's a small percentage, actually, of women, though you can see a tiny rise.
If we look at the women, they are either drug users, or they are partners of drug users. Sometimes they engage in sex work.
A research was done, called "Vulnerability Assessment of People Living With HIV in Lithuania," that was led by Mykolas Romeris University; and it was supported by UNODC. [The research involved] qualitative interviews, interviewing HIV-positive men and HIV-positive women about their vulnerability. And a few girls that were interviewed were also pregnant, and gave birth to children. So I would like to give you two examples.v
This is a quote from one interview: "It was during childbirth here, and they started to shout at me that ... how could I not look after myself, and that I was using drugs while pregnant. ... I explained that I could not stop using them because they did not let me in the AIDS Center. [We do have methadone maintenance therapy.] They just instructed me to reduce the dose so that the child would not have convulsions once born. ... How can one do that? They started to shout because of the operation room, that the operation room would have to be disinfected now. 'We have not had similar cases before.' They treated me in a very rude way ..."
Anna Zakowicz. AIDS 2010; abstract WEGS04. Reprinted with permission. Download the full slide presentation.
And the other quote is: "There was a noise. She opened the door and started to shout, 'This is not your first childbirth? How can you give birth to children with such test results? Infected with HIV!' And so loud. ... And I'm asking the doctor, 'Why are you shouting? There is a queue waiting outside the door.' And she [said], 'Why shouldn't I shout? What are you thinking, giving birth to sick children?' That's what it was like."
On the basis of these two examples, we can see that, generally, in the whole population, people do not talk about sexuality in a positive way. And when we think about drug users, and when we think about sex workers -- their rights for sexual pleasure, and their rights for having children -- this is even a bigger problem. ...
When I look at Lithuania, I think that we must come to the basics, and we must start to rethink the whole system. And it also works well for women who would like to have children. That's why I gave the examples here.
I think what we lack is a safe and supportive environment for women who are positive, and who use drugs, and who want to get pregnant. We also need more people who will treat people who are HIV positive and, among them, women. We need more gynecologists, because we have only one, with limited time -- only a few hours per week.
There is no one to talk to women, about how they could take care of themselves. There is a need to educate young doctors; and also, either to have hospital wards, or have well-educated doctors in infectious diseases clinics. And we need to work on empowerment, to reduce stigma.
We also need counseling, at the NGO [nongovernmental organization] level. We have only one NGO that works with women who are HIV positive, which is based only in the capital. So it's also a problem, to reach the women who live in other cities.
We need self-support groups. I myself tried to set up a self-support group. And we've been running the self-support group for some time. But it's very few women who come up, who want to talk about their HIV status, about their sexuality. So this is also an obstacle.
We need community involvement in planning of the services, so we need to be engaged in the planning at the governmental level. And then we need to be involved in the development of the services, and also assessing the services. We need quality information about HIV and reproduction, and pregnancy.
As we see from the other presenters: There is a wealth of experience. We can learn from very good examples. In Lithuania, we can use it, and we should use it. We should teach our gynecologists about assisted reproduction techniques.
Political commitment: I put it as the last point, but I think this is the key issue, because with it comes the money that we lack -- and the desire to change the situation.
This transcript has been lightly edited for clarity.