Interview with E. Tyler Crone on The Body

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   Interview with E. Tyler Crone on The Body

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The "Gender Problem" in HIV Policy Making: No Women at the Table

An Interview With E. Tyler Crone of ATHENA

By Kellee Terrell

September 29, 2023

While the CAPRISA microbicide study dominated most of the news coming out of the International AIDS Conference in Vienna this summer, an impressive report that addressed the needs of women went under the radar. Transforming the National AIDS Response: Advancing Women's Leadership and Participation highlighted the serious need for more female leadership, participation in policy making and funding for grassroots HIV initiatives and programs that focus on women.

Researchers from the United Nations Development Fund for Women (UNIFEM) and the ATHENA Network note that while the face of the global AIDS epidemic is female, there is an alarming lack of female leadership in decision making, especially among HIV-positive women. In an effort to better understand why this gap exists, they conducted more than 100 in-depth interviews with leaders and decision makers; examined existing literature and case studies; and surveyed women living with HIV and affected by HIV from around the world.

I sat down with E. Tyler Crone, J.D., M.P.H., ATHENA's coordinating director, to talk about the report's findings. We also discussed how sexism plays a negative and impactful role in HIV policy making, and what can be done to ensure that more positive women get a seat at the table.

How did Transforming the National AIDS Response come about?

Around 2007, there was a lot of rhetoric about how globally, AIDS is bearing a woman's face and how more women need to be at the table when making HIV policies. Which was a great thing, but many of us were interested in where all of this rhetoric was going. How were they were going to reach women for inclusion, how were these policies and strategies going to be viewed through a gendered lens and how many women were really at the table? As we went into more detail we saw that there was such little data, it was clear that our fears were true -- women were absent. And we wanted to do something about that.

Why is women's participation so crucial in developing gender competent and effective strategies?

A great HIV-positive colleague of mine from Canada told me that positive women are the knowledge brokers and if they sit at the table at a decision making forum, they can say how this decision affects communities who are living with or affected with HIV. They can see the blind spots of policies, attest to their shortcomings, and speak on unintended consequences that they live out because the policies don't take into account certain things.

So, let me give you an example of what happens when women are not involved. In the very early stages of trying to prevent vertical transmission, HIV positive women and women advocates were not made part of that process. First, it was originally called mother-to-child transmission (and still is), which places the blame on the women and goes back to the notion of women being vessels for children. This attitude translated into a huge failure because they were only providing the mothers a short course of antiretroviral drugs during delivery.

So there were drugs to save the baby, but nothing for the mothers -- that approach was only going to create a generation of orphans. These policy makers did not understand that you need to keep the women healthy to support the family. So when more critique came forward and more positive women were explaining to them how this strategy was playing out in their everyday lives and how these programs were reinforcing the stigma around women, the policy makers changed the entry point as to when women would start treatment.

But once again, it was short-sighted. And as more positive women spoke out, they were clear that putting them on treatment was a good thing, but if her partner or other children were infected and were not getting access to medicines, the woman was going to be forced or would willingly share her drugs and take care of everyone else.

Policies that are formed without the perspective or expertise of lived experience fall short -- and these shortcomings happen way too often.

One of the report findings was that when women are at the table, many male leaders treat that participation more as a privilege rather than a right.

Yes, they do. And what ends up happening is that at the eleventh hour, after the meeting agenda is formulated without your input, women are invited in. They will call you on a Friday and ask you to be part of a two-day meeting starting for that next Tuesday. They expect you drop everything -- not caring about child care arrangements -- to show up for a meeting that could be thousands of miles if not across the world.

You have had no time to prepare; you were not part of creating the agenda, so you cannot make any changes to it to include anything new; and it's hard to suggest anyone else who should be in on the conversation that could help elevate the discourse. You haven't even had time to consult with or e-mail the women in your community to get their input or ideas of what you should be talking about.

When you get there you are exhausted, jetlagged and upset -- so you come from a place of complaint, which makes it hard to build any alliances with others. You sit in a stuffy conference room at a long table where no one is looking each other in the eyes because the presentations are in PowerPoint. This environment is very intimidating, especially when everyone is speaking in acronyms that only the well-versed would understand.

I have been doing this work since the early 90s and have a background in public health and law, and there have been times where I have been completely spent by techno speak and lingo. So for the women who are doing amazing work in their communities, but have little formal education, there is no way that they can keep up or have the opportunity in these settings to meaningfully share their knowledge and influence the decisions being made.

It's just a disempowering experience. And for the women who are on the circuit, it keeps happening over and over and over again.

What are some reasons why women, both negative and positive, are left out of HIV policy making?

First, because HIV was first identified in white gay men, that's where all the research and money went to in the early years -- and that legacy continues to play out. There just hasn't been the same type of money and attention around women's mobilizing, leadership and research. Women have basically been invisible. Just in the past 10 years, has there been recognition that HIV is devastating women.

Second, historically in almost every arena you examine, women have been underrepresented in decision-making forums. While this is outside the scope of our review, I believe that sexism and gender norms dictate when women participate and when they don't. Looking specifically at women who are living with HIV, they tend to be less formally educated women, so they face a range of issues, from having to be responsible for the home, fear of speaking up and speaking out against the violence they face in their communities, and afraid of the stigma they may face if they reveal that they are positive. We are also talking about lack of access, lack of resources and even a lack of regular Internet connection.

We are also talking about basic things like how are women going to pay for the bus fare to show up to a meeting -- and if they get there, who is going to take care of their children? That was something that women from Alabama to South Africa were concerned about when we interviewed them.

Speaking of money, many of the women activists I got to know who do AIDS work globally and in the U.S. do much of it on a volunteer basis. Meanwhile, most of the HIV institutions are staffed by men who have paid time to think about strategies, and paid time to show up to meetings, and a staff that can book their airfare and hotel rooms. So while the barriers are not very glamorous or sexy, they play a critical role nonetheless in limiting women's engagement and role.

At the same time, I want to honor and acknowledge that women are doing really transformative work in their communities. Despite these barriers or lack of participation in formal mechanisms, there is a tremendously strong HIV women's movement flourishing.

What are some examples of the great work that women are doing that goes unnoticed?

When people ask what is happening with women and what solutions work, one has to first talk about the persistent underfunding and the lack of capacity building to scale up and sustain these programs.

Basically making it destined to fail.

But work is being done. Right now, home-based care is front and center, with women providing care to people who are really sick with AIDS. Women, who make up 90 percent of home-based care workers, are coming to people's homes bringing food, making sure they are taking their medications, bathing them and helping them. This is the backbone to the HIV response in the global south, yet it garners very little money or attention. The AIDS world has stopped paying attention to it and feminist groups have stopped pushing it because they feel that it pushes the notion of women as caregivers.

Another form of grassroots work being done by women living with HIV is providing support groups for other positive women. These groups provide a safe place for women to go in order to ask questions about their medications, seek help about domestic violence, obtain information about contraceptive methods, and learn skills. These groups also provide a sense of community and build strong leaders through peer mentoring. But it, too, goes underfunded.

Work around violence against women and gendered violence hasn't been recognized sufficiently as an essential part of the AIDS response, even though there is a lot of work being done and definitive literature that shows that violence is both a driver of HIV transmission and a result of HIV. Researchers have been examining these connections for decades, but it is only now, in 2010, that the issue is being taken up in formal spaces. We need more funding for work on violence as an HIV strategy, both in terms of prevention and impact mitigation.

The report laid out 10 recommendations for high-level policy makers, including asking groups to monitor and track the participation of people living HIV; reserving seats for positive women and advocates at policy meetings; providing leadership training, sustained technical support and mentorship to women leaders; and investing in organizations and initiatives led by and with HIV-positive women. How did ATHENA and UNIFEM come up with these recommendations?

It was challenging -- we could have come up with more than 10. We wanted to identify what really needed to be done; be pragmatic and reflective; and suggest some concrete steps that people can take. But we also wanted to set some lofty goals as well.

So we made an amalgamation of past statements, civil society papers and past research to rearticulate what others had said. Some of this is really obvious, some is pushing the envelope, some is based from what the women we interviewed told us. But all of it is laid out in one document and it clearly states what we want to see happen: a rise in visibility, a rise in participation, a rise in funding to sustain women's groups and leadership.

What was the response to the report been?

That's such an interesting and troubling question. At the IAC, we had a fantastic satellite event with HIV-positive women leaders from around the world. We had a great dialogue about our experiences, what meaningful participation means, and what our next steps should be.

Then later on we had a press conference, and at first there was a very slim audience. But then the room started to fill, because Bill Gates was having a press conference immediately after ours. Coincidently, some of the journalists then took the research and findings we presented and tossed it back at Bill Gates during his question and answer session -- which was fabulous.

Unfortunately, as much as mainstream media was present covering the conference, gender and women's issues just didn't get the reception they deserve. And still doesn't now.

Well it's not sexy. And it's not coming from someone like Bill Gates.

It feels tired because unfortunately we keep saying the same thing -- over, and over, and over again.

Bill Gates is an interesting point. Back in 2006, Bill and Melinda Gates both said they were going to put the power of prevention in the hands of women. They were going to scale up the funding for microbicides -- and they did. And don't get me wrong, microbicides should be celebrated, because we need all the tools in the tool box that we can get.

But the Gates talked about power and microbicides without any real conversation about what power is. Look at condoms -- you can disseminate them out to women, but if they don't have the power to enforce them in their relationships, what does it mean? Microbicides can have that same analysis. It's one tool, it's an important tool, but it's just not it alone.

I agree that putting power in the hands of women would be a huge prevention tool, but the HIV mainstream actors don't talk about power in terms of women's human rights. Yet you look time and time again, whatever the issue it is and everyone wants the biomedical fix. No one wants to deal with the social factors.

We need more money, more sustainability, more training for women and programs that address these social issues in order to create effective policies and strategies for women living with HIV around the world.

Crone's views expressed in this interview do not necessarily reflect the views of UNIFEM.

Kellee Terrell is the news editor for TheBody.com and TheBodyPRO.com.

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