"How can we increase acceptance, unbiased information, and support for people who want to have children, or who don't want to have children? And how can we decrease all this misinformation, stigmatization, criminalization and coercion?" Clinical psychologist Ulrike Sonnenberg-Schwan has asked herself that question for all of her 19 years as an advocate for the reproductive rights of HIV-positive people. Here, Sonnenberg-Schwan recounts Germany's journey toward providing comprehensive options for HIV-positive people looking to become parents -- and what needs to happen to expand access to these services to a broader sector of that country's population.
From family planning to parenthood: That doesn't only mean pregnancy planning, but also the right to have no children, to safe abortion, conception, contraception, reproductive counseling, antenatal testing -- which is a real huge problem in many countries -- childbirth, and also, parenthood which is free from stigma and discrimination.
In many, many countries, all over the world, the reproductive health rights of people living with HIV/AIDS are really a neglected topic. I constantly ask myself, as I have done for the last 19 years: How can we increase acceptance, unbiased information, and support for people who want to have children, or who don't want to have children? And how can we decrease all this misinformation, stigmatization, criminalization and coercion?
I think, really, many of these issues are universal. And although I come from a high-income country, with one of the best health care service systems in the world, we still are facing a lot of problems -- not least of which is discrimination by the health care system, itself.
Some short information about HIV and pregnancy in Germany: In 2009, we had about 67,500 people living with HIV and AIDS in Germany -- some of you will say, "Well, that's not really a very huge number," and you're right. About 12,000 of them are women, and 75 percent of them are of childbearing age -- which doesn't mean that they all want to have children, but most of them think about having children. We have got 250 to 300 births per year, and the transmission rate is very low in Germany because of the excellent health care for women who know that they are HIV positive. It's below 1 percent.
But we also have, still, about 25 new HIV diagnoses in children every year. And most of them got infected during birth, because the mother had no access to an HIV test during pregnancy. The policies have now changed to improve the situation.
This is now a question in Germany, though it's no question in many other countries, all over the world: We have an increasing number of vaginal deliveries now. Since 1995, nearly all of the women had a Cesarean section, which reduced the transmission rate before there were any antiretrovirals. But women really had no choice for years. And now they have the choice -- not in all clinics, but in some clinics.
This is a brief history of HIV and parenthood in Germany, and it's also a very personal history for me -- it's also a history of hope, and it's a history of my own coming to be an activist and advocate: In the beginning, in 1989, and in Germany until 1991, there were only three doctors --and then, from 1991, me -- who supported and recognized this wish for parenthood [among HIV-positive people]. And you may remember that the first inseminations with processed sperm were done in Italy with Augusto Semprini, an Italian doctor, as early as 1989.
At the beginning of the '90s, we founded a project in Munich to support and counsel couples. And it was really a time when we all, including myself, mainly focused on the wish of HIV-positive men to become fathers, and not on the wish of HIV-positive women to become mothers. Some women became mothers. Many women got abortions. Many women got sterilized during those abortions at that time, during the whole '90s. And nobody thought about the right of women to have children, and about their needs. They really had to constantly fight against stigma and prejudice, and things like, "You are irresponsible. You will be a bad mother. And you will leave your child alone, and your child will be an orphan," and all these things.
I presented the first results of our project as early as 1992 in Amsterdam, at the International AIDS Conference, and there was huge interest from all over the world. But nothing happened. Nothing happened, but couples coming from many countries of the world to Munich, and to Italy, to get their counseling there. There were even couples from Brazil, and from the United States. And from the beginning of the '90s, the situation began to change, and other European countries started to develop their own programs.
Then in 1995, we introduced the Cesarean section in Germany, because it was noticed that it was able to reduce the transmission rate. The transmission rate was around 5 percent, and from that moment on, we started to educate women on how to get pregnant. My first teachers were lesbian women who were not HIV positive, but who knew how to use sperm to get pregnant without having intercourse. And this was really very important.
In 2000 we had the first cases of assisted reproduction in Germany for HIV-positive women who had fertility problems. All the other women didn't need this kind of support, but there were many women who had fertility problems.
In 2000, we published the first [family planning and reproduction] guidelines. Worldwide, these were the first guidelines. And afterwards, nothing happened in other countries. Really, it took years until other countries developed guidelines.
In the 2007 revision, we included women. And now, this year, we've embraced the Swiss statement supporting natural intercourse when the viral load is below detectability. And still, seroconcordant couples have no access -- only in individual cases -- to reproductive support.
At the beginning, I wasn't an activist. I had been working as a volunteer in the AIDS system. But there was really a need to fight against all the stigma and prejudice, and I noticed I can't do this without the help of other women, of all those stakeholders, who play a role in this field; and without networking. To talk about models, to introduce services, to implement services: You can't do that alone. I thought that in the beginning, and in the end, I was an advocate and a networker.
Reproductive options in Germany now range from unprotected intercourse. We also have a project for pre-exposure prophylaxis for couples. We can offer assisted reproductive services in some centers. And still, the access for women is more limited than for men. Men have a better access, and HIV seroconcordant couples have the lowest access, to these services. This really has to be improved.
I have talked about many of the barriers. Cost is also a barrier in many, many countries. Assisted reproduction is very, very expensive. There's only one country I know where it is really free of charge. This is France. And Austria reimburses 70 percent. But in all the other countries, I think, couples have to pay for themselves. For most of the couples, this is just not affordable. Couples have to get more support.
Looking ahead: We need policies against discrimination and stigmatization. We need better education of health care professionals in HIV and reproductive issues. We need better and equal access for people to counseling and care; and remember, it's not only heterosexual couples who are seeking counseling, but also singles, gay couples and lesbian couples.
We need joint efforts of all stakeholders in the field. In implementing those services, we need GIPA [greater involvement of people living with or affected by HIV/AIDS] and MIWA [meaningful involvement of women and girls living with HIV/AIDS].
This transcript has been lightly edited for clarity.
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