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.
Shari Margolese, Canada
Shari Margolese has been an active advocate for people living with HIV since shortly after her own HIV-positive diagnosis in 1993. Her advocacy efforts have often focused on the needs of the HIV-positive family, and sexual and reproductive rights of people living with HIV. Read her full bio.
It's not her own desire to be a mother again that fuels Shari Margolese's drive to ensure a spectrum of safe, stigma-free pregnancy planning options for both men and women living with HIV/AIDS in Canada and beyond. HIV-positive activist and community-based researcher Margolese wants to one day be a grandmother -- so she's paving the way for her HIV-positive 18-year-old to someday have children. The Canadian HIV Fertility Program, which Margolese helms, is poised to launch a number of unique and exciting initiatives. Margolese details the process.
The reason that I'm here to begin with is because I have an HIV-positive child, and that HIV-positive child is actually now an HIV-positive youth. He's turning 18 in November. My motivation for doing work around pregnancy planning and reproductive rights is not to be a mother -- because I'm 47 years old, and I'm over it -- but hopefully, one day, to be a grandmother, and to be able to provide safe pregnancy planning services and a welcoming environment, free of stigma, for my HIV-positive son to be able to have children.
I definitely wanted to give you that impression. I also want to say that the work that I've been doing has been under the mentorship of Dr. Mona Loutfy. And we believe very strongly in community-based research. All of our research is community based.
I'm not going to go through the statistics in detail, but I do want to say that our program, the Canadian HIV Fertility Program: our objective overall is to provide a program that is going to assist people, all people, living with HIV. It's a program that's quite unique, actually, internationally, because we're looking at assisting men and women -- regardless of gender or sexual orientation -- living with HIV, be they in serodiscordant or concordant relationships, with their pregnancy planning and fertility desires.
The model is very transferable. It's what we call a policy development model. Our goal is not only to do some research around pregnancy planning and reproductive rights, but to turn that research into action. And action, in many cases, means creating policy in our countries, or in our provinces, or in our regions, that will be able to actually be something useful that people living with HIV and their health care providers can use, in order to plan safe pregnancies.
Shari Margolese et al. AIDS 2010; session WEGS04. Reprinted with permission. Download the full slide presentation.
Phase I is developing: What's the evidence? What do we know about pregnancy planning and HIV? Now, what we have done in our region -- and I think this is something that, again, is transferable -- is that we've looked at: What is the evidence that exists? And if there was no evidence, we've actually created small research projects in order to find out the answers to some very important questions, so that we're not just waving a banner and saying, "Hey, we need pregnancy planning rights. This is why." We need to be able to prove to funders, to policymakers, to health care providers, why we need this.
We've also looked at: What are the services that are currently available, and what's missing? So now we can look at what gap we need to fill in order to ensure that these services are available.
I think the most important phase of our model has been linking together stakeholders from various different disciplines. There are two of us, equally at the lead of this project: myself, as a community member, who is learning to become an independent researcher -- and more than a community member, a person living with HIV, so it's a true example of GIPA [greater involvement of people living with or affected by HIV/AIDS]; and then also, my co-investigator, Dr. Mona Loutfy, who is an academic and a clinical researcher. Then we thought: Who else needs to be at the table in order to make this happen?
So we knew that we needed fertility specialists, obstetricians and gynecologists, psychologists, psychiatrists, AIDS service organizations -- all the pieces of the puzzle that touch the lives of people living with HIV -- in order to help us have safe and healthy pregnancies.
This has been very, very successful. And what we've tried to do is, first of all, bring them together in a room, which doesn't happen very often, and let them talk to each other and try to determine what are their fears and what are their reluctances to provide services; what have been their successes; what have been the barriers.
Not only that, but we've also tried to identify what we call "champions." I consider myself to be a community champion of this issue, and Dr. Loutfy to be a physician champion of this issue. But we've also found champions within the fertility movement, as fertility specialists, as obstetricians and gynecologists, as policymakers. Because who better than our peers to actually convince others in those disciplines that this is an important issue, that it's a human rights issue, and that it's something that needs to be dealt with?
Again, I like to keep saying this is transferable. This doesn't only have to happen in Canada; this can happen in other countries.
So the third phase of the program is what we're calling programmatic interventions. We have a provincial project, where we're doing things in a more in-depth fashion, because we can actually pilot more projects before we take them national.
Currently, we're creating national clinical guidelines on HIV pregnancy planning and fertility. They are actually finished now, and they're going to the Society of Obstetricians and Gynecologists and Canadian Fertility and Andrology Society. We were kind of clever. We got them on board on our guideline panel so that they could help us create them, and now we're going to send the guidelines to them and ask them for endorsement. Because they helped us create them, it's going to be kind of hard for them not to endorse them; and without their endorsement, it's difficult to get the uptake that we need by the people who are providing services. So I must say that was Dr. Mona (as we love to call her)'s idea. She's quite brilliant that way, in bringing people together.
We're also creating pamphlets in different areas: about pregnancy planning for positive men; pregnancy planning for positive women; information for women diagnosed during pregnancy. And also, we have another pamphlet that looks at some of the postpartum concerns, for after you've had your baby: So now what? What are the things that we do? Those are actually in the final draft, and they're going to print in August. They'll be made available very soon.
The next phase will be to distribute all of these. So we're going to have a big launch in April 2011 at the Canadian Association of HIV Research Conference. And that's, again, a conference that includes all kinds of disciplines.
We're also going to launch them at the Canadian Fertility and Andrology Society. We'll launch the guidelines, the pamphlets. We want to do a Web site, but we haven't got the money for that yet, so we're going to tag on other people's Web sites when we can. We'll probably call on Dawn [Averitt Bridge, at The Well Project]. We're going to call on ATHENA, who have already agreed, and others at our Women's College Research Institute in Toronto, certainly. Probably, we'll be looking to TheBody.com -- and many other Web sites, until we can actually create our own.
One interesting project that we just got some money for is to actually develop a preconception cohort. So we're taking couples who are either serodiscordant couples, or concordant couples, both same-sex couples and heterosexual couples. And we're going to follow them from the preconception stage through the pregnancy and into the first few years of life as parents. And we're going to develop a series of questions, and monitor what their experiences were so that we can see if the projects that we're doing are actually making an impact.
As I said before, this project has been a true example of GIPA. I think it's really important to share that. People living with HIV have been involved in every single aspect of this project, from writing the research questions to developing the protocols, to writing the grants. You know, research ethics board submissions, program delivery, data analysis ... and where we don't have the skills, we're being mentored, and we're learning the skills. It's a really exciting project in that respect, as well.
There have been some benefits and some challenges, but the most important benefit has been ensuring the relevance of the research questions. It's all well and good to do research. But if it's not the research that the community is interested in, or is going to take advantage of, then it's really not research that we can put into action.
This transcript has been lightly edited for clarity.