Breaking the Taboos: Pregnancy Planning and Fertility Issues for People Living With HIV/AIDS in the United States
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.
How do HIV-positive women perceive stigma relating to their right to get pregnant and have children? And is it really all that important for HIV care providers to be able to talk with their clients -- male and female -- about pregnancy planning options? Longtime advocate and HIV-positive mom Dawn Averitt Bridge presents results from a survey of 700 HIV-positive women, which attempted to answer these questions and many more.
Here I am, talking to you from the United States. And everybody says, "Well, what could possibly be wrong there?" But I think that one of the things that we sometimes miss in our discussions about family planning, sexual reproductive health, and integrating it all into general HIV care as it relates to women specifically, but also for men, is what our perceptions are -- how we, as positive women, view the stigma and the access to services and care. So I'm going to share with you the results of a survey that I helped develop a couple of years ago called the Women Living Positive Survey .
The Women Living Positive Survey involved 700 HIV-positive women from across the United States, from very diverse areas, and a nice racial breakdown of African-American, Caucasian and Hispanic women, so that many groups were well represented. And obviously, some groups were not. But this was an opportunity via a phone survey, with almost, I think, 50 questions in it, to get perceptions and perspectives from positive women.
We don't need to go into survey design and methodology, but I think that there are some important things for you to know about the types of questions that we were asking, specifically: communication with health care providers, understanding about HIV treatment and, then, specifically, family planning, as well as mental health and quality of life. So I think before we even get to the family planning component of this, talking about what positive women's overall perceptions on treatment are is really, frankly, very important.
Keep in mind that these are positive women who are in care -- they've been positive for at least three years, and they are already accessing services, so already we have a bit of a bias here in the information that we have, but it's still important. Positive women, no matter what their ethnicity, have much in common when it comes to how they feel about their status, and how they want to be treated. Interestingly, very high percentages -- between 90 and 97 percent of the positive women who were surveyed -- felt like keeping viral load down was a priority, that long-term success with medication was essential, or very important. Ninety-four percent of the women indicated that the ability to live a normal life was essential or very important, when considering HIV treatment options. What they were being prescribed was important, because it was about longevity. It wasn't just about taking something for today; it was about planning for a future.
And then, over two-thirds -- 69 percent -- of the women cited the ability to continue with family planning as a significant aspect to their HIV care. So I think what we're hearing is that almost 70 percent of the positive women who were surveyed in this particular study said, "Yeah. I want to talk to somebody about having children, about what my options are, as a plan for a future."
So what about family planning? While the ability to continue with family planning is important for many women with HIV, among the women who have been pregnant already, or who would consider pregnancy now, or in the future, sometime down the road, approximately half (48 percent) report that their HIV health care provider had never asked them if they would like to have a child, either now or sometime in the future.
Some people say, "Well, is that really important? Does it really matter if their doctor asks them about it? Especially if they're seeing an HIV specialist who doesn't really think about family planning needs or options." But it is incredibly important. It's important for what treatment options you choose. It's important for developing a relationship with the provider, where the woman feels like she can trust her provider and talk to her about all of her goals and the things that are important. There are a whole lot of reasons that it's important beyond just what would happen in a pregnancy.
So, more than one-third of the women who are or have been pregnant, or would consider pregnancy now or in the future, indicated that they had not discussed with their provider what their treatment options should be. Consequently, more than half of these women look to other sources for information on the topic. Now, there's some good news and bad news there, because we all know that there's all kinds of information out there, and it's hard to sort it out. Not being in a position to have an open, honest dialogue with your health care provider, and to say, "Listen, this is something that's important to me," is a real problem.
I know for me personally, when I was diagnosed with HIV in 1988, in the United States we had one approved drug, and life expectancy was about six months. The first thing that they said to me was, "Of course, you'll never have children." I mean, if you're only going to live for six months, you won't make it all the way through a pregnancy, right?
Over the years, when I would try to broach the issue of having children, I got all kinds of responses, including my most favorite -- to quote: "What are you, some kind of homicidal maniac?" -- which was the doctor's desire to deflect my interest, and just say, "You can't do this. You're crazy."
Those kinds of responses not only shut you down from considering pregnancy, but they also shut you out of care. So I think that these family planning discussions are critically important.
Among women who have been or are currently pregnant, a majority have not discussed appropriate HIV treatments to take during their pregnancy. Furthermore, 40 percent of these women were not very, or not at all, aware of the treatment options available to them when they first became pregnant. So, 57 percent of women with HIV who have been pregnant, or are currently pregnant, did not discuss the appropriate treatment options with their provider before they became pregnant. We're having to make changes and modifications after somebody becomes pregnant, instead of being proactive and talking to people about their choices, up front and early.
I want to make sure that I don't close without mentioning a few issues around fertility and family planning, specifically in the United States. We have laws in place in the United States that prevent fertility treatments for HIV-positive women. The assisted reproductive technologies are quite good but, unfortunately, not available to many women and men living with HIV in the United States. And it's a huge problem. Many of us chose not to have children many years ago, because we were either told we were crazy, or the risks seemed too high. And because people have gotten older, because you had long-term HIV disease, whatever the reasons are, fertility has become a very big issue and a big problem. It's something that I think we really need to address in a very significant way.
Stigma is also alive and well. This is not only imposed stigma, but also perceived stigma. That's what this survey talks about: positive women's experiences, and how they perceived their right to choose to have a child.
Finally, there's an enormous amount of patient and provider education that needs to happen. I sit next to people in public places all the time who start talking to me and ask me what I do. Do you all ever have that experience? And then you think: How long do I want to talk to this person for? And then I tell them, and they ask me how I got into it, and I say, "I'm HIV positive." And then, when I tell them that I have children, they want to know: Did I have the children, or did I somehow get children some way? Did I actually give birth to these children? And when I say, "Yeah, I did," they're very, very interested, and very confused. And this happens not just with people out in the world; this happens with health care providers as well. They're very surprised to learn that positive women can have children with a significantly reduced risk of transmission with aggressive prenatal care, and good access to treatment. So there's a lot of patient and provider education that needs to happen. And then, of course, there's the thing that we all have to deal with, which is fear.
I have two daughters. Madelyn Grace is eight years old, and Sophie is six. And they are, fortunately, both HIV negative, products of good access to treatment and care -- and some luck, obviously.
This transcript has been lightly edited for clarity.