By Angelina Namiba

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Originally from Kenya, Angelina has over 24 years of experience working in the HIV sector on different initiatives. She is a founding member of the 4M Network of Mentor Mothers living with HIV and sits on various national and international advisory boards. She is a patron of the National HIV Nurses Association, a lay member of the Women’s Network of the Royal College of Obstetricians and Gynaecologists, a member of the organising committee of the International annual Women and HIV Workshop, and has been a Community Representative for the British HIV Association. She is also a Trustee of the National AIDS Trust, Salamander Trust, and SAFE Kenya.

HIV is still commonly stereotyped as something that only affects gay men. You’ve worked on advocating for greater involvement of women in decisions being made about HIV. Can you talk a bit about how the involvement of women has changed in the sector over the years?

We're becoming much more visible. On a personal level, when I was first diagnosed in the early 1990s, I thought that I was probably the only woman in London living with HIV because I didn't know anyone else. Most of the services which existed at the time were very much geared towards white gay men.

I started volunteering for HIV charities, and later saw a job advertised for an organisation called Positively Women. Back then, it was one of the key organisations that worked specifically with women, and it was set up in recognition of the lack of women-specific services. But women weren't as visible then as they are today. Now there are so many women living with HIV who are visible and vocal. I'd like to pay tribute to Positively Women because accessing a women-specific service has changed the lives of so many women living with HIV. Thanks to these services, they’ve gotten support, they’ve gotten back their self-confidence, they've moved out into the world and they're doing great things. It’s about making sure that the voices of women living with HIV are heard in policy and decision-making.

Earlier in my time at Positively Women, one of the projects that I led was called the Taking Part project, which was about training women living with HIV to become involved in policy and decision-making. We gave them the skills to go and speak in parliament, present at conferences, and help to shape policy papers. A lot of the women who took part in that project went on to do great things. Accessing women's specific peer support allows women to move from being service users to leading on policy. For example, Silvia Petretti initially came into the organisation as a service user, before becoming a volunteer, then a staff member, and she's now the CEO of the organisation. I feel we've got more and more women doing that. But we still need more spaces.

I didn’t realise that at the time there were so few women who were open with their status like that.

There are still very few even now, but there are many more. It took me a long time to get to where I am. We used to do a newsletter: when I started writing articles, it would be ‘by Angie’, then a few issues down the line it would be “by Angelina”, and then a few more issues down the line it would be by “Angelina Namiba”, and then I started appearing in the media, newspapers, radio…etc. But it took a long time to get there. The thing is about informing policy is that you need to be confident and ideally need to be open about your status, although that’s not a prerequisite. You need to have the skills and you need to have the opportunities.

Even if you forget about HIV and forget about anything else, we know that A) women are underrepresented and B) there generally aren’t enough spaces for us. So it's even harder for a woman living with HIV to get up there. And in the beginning, and this still happens now, a lot of people just want to do the ticking a box thing of ‘okay we've got a woman living with HIV on the panel’. They’d say to me ‘come and talk about your experiences; we’ll give you five minutes.' How do I talk about 20 years’ experience in five minutes? So, over the years we have had to shift the paradigm for policymakers and the powers that be to understand that it’s not just about saying there's a woman living with HIV on the panel: you need to give us the space, the opportunity, and the time to make our case.

You’ve also done some amazing work around living with HIV as a mother. What are some of the common barriers mothers living with HIV may face and what work still needs to be done to support them?

I'm one of the founding members of the 4M Network of Mentor Mothers CIC, which is a network of mentor mothers living with HIV. It is a perinatal Peer Mentoring Project, which trains, supports, and builds up the skills of mentors living with HIV so that they can support their peers through the pregnancy journey and beyond, including support relating to pregnancy, parenting, mental health, sexual and productive health, and HIV-related issues.

In terms of the issues facing mothers living with HIV, there are many. On a personal level, there is the issue of coming to terms with an HIV diagnosis, and the issue of sharing their status with significant others, because oftentimes you find that women are diagnosed first, because we tend to be more health-seeking than men. This means they are likely to get their HIV diagnosis before their partner or husband, if they have one. Or you might get your diagnosis when you're pregnant, which means that it’s not just about you. You might have to face telling your significant others, having to test your children, worrying about starting treatment, asking yourself: is it going to work? How is it going to affect me, my baby, my unborn child? What are the potential side effects?

How would you say stigma impacts women living with HIV?

There are still issues around stigma and discrimination, even though we have fantastic treatment. We know that means undetectable equals untransmittable, which means that when people living with HIV take treatment and maintain an undetectable level, they can’t pass HIV onto a sexual partner or an unborn child, which is a really powerful message and concept. But not everybody has this information. Unfortunately, even though we have come so far in terms of science, we haven't got a pill to deal with stigma.

So myths and misconceptions still persist. And people still tend to be very judgmental about women living with HIV. There is also what I guess you could call self-stigma: before a lot of us were diagnosed, the messages and images that we’d encountered about HIV had been very negative. There’s also the stigma that comes from other people labelling you, and there’s almost always the assumption that you must have done something wrong in order to acquire HIV.  As far as I'm concerned, HIV is just a virus, it's not a moral issue. If somebody doesn't like me just because I live with HIV then they can just walk in the opposite direction, because I don't need them in my life.

What other factors have you uncovered that are important for women living with HIV?

We have got to acknowledge the fact that community is very important to a lot of the women diagnosed with HIV. In addition to all the stigmas that people living with HIV face, I think women from African communities experience it even more. This is because in African communities, many people rely on the community. We don't live in silos. From a very young age, we are brought up to believe that our families are our communities and that we have a responsibility to support our families and in turn, our communities. So, for example, my child is not my child alone. She belongs to the community. In fact, I have a daughter who is 23, and she probably has about 60 Auntie's here in London, because when we moved from our countries, the friends that we made here become a family. The community remains extremely important.

This idea is embodied in the Spirit of Ubuntu. Ubuntu is a South African concept which means that we are who we are because of others. It means that the community looks after each other. Another example would be in Kenya, where we have a concept called Harambee, which means pulling together. Not many families there have a lot of money, but people still need to get married, people still need to go to school, and people still need to pay for funerals. Whenever somebody needs something done, whatever support people need, we all come together to raise funds. This is a tradition that continues today.                                                                                                     

So while this is a very positive concept, it also means that many African women worry what the community will think of them. If the community already has misconceptions and stigma around HIV and judgement around HIV, if I tell them I’m living with HIV and they judge me, then what then am I going to do? This is the flipside to the community thing. And that's why you will sometimes find that people don't want to be open about their status, because they worry about what people think of them.

But I can say that because I have a roof over my head and will not go hungry. If somebody doesn't like me, because I have HIV, it really isn't going to make any difference in my life: I have a roof over my head, I have something to eat. But I'm acutely aware of the fact that there are many, many women out there for whom being open about their status is not an option, because it's the difference between them having somewhere to live or not.

What kind of challenges do women face when they do share their status?

At some point, most of us are going to have to share our status with somebody, whether it's a family member, a friend, or a potential partner. We try to support women by ensuring that they have the tools and the information that they need. The language that you use around this is very important because it makes a difference to how somebody receives the information. For example, you'll still find people referring to it as ‘disclosure’. But I do not like that term. Disclosure sounds illegal- it’s a loaded, negative term. We try to encourage people to use terms like ‘telling, ‘sharing’ and ‘talking’ instead. If I come to you and say, ‘I need to share this with you: I'm living with HIV, I’m taking treatment, I can’t pass it on’, then it seems like less of a big deal. It’s also important to have the information you need to answer what questions people might have. 

It's important that talking about your status is your choice. You shouldn't be doing it because you're forced to do it, although of course, for some people the decision is taken out of their hands. But at the end of the day, in terms of being prepared to share your status, it's about doing it from a position of power. For a lot of women upon diagnosis, their self-confidence is shattered, and their self-esteem is low. It’s important to bring those back.

What kind of relationship challenges do women living with HIV face?

Not everybody wants to be in a relationship and not everyone wants to have children. I have friends who just want to have their cats and they're fine with that. But being in a relationship is for many of us an important part of being a human being. For people who don't have HIV, what you need to worry about is finding somebody who likes you and getting to know them. That in itself is already daunting. But having to tell prospective partners your HIV status makes it even more complicated. We find that a lot of women living with HIV will stay in relationships that are not necessarily healthy for them because it’s easier to stay. This leads to another issue: a significant level of intimate partner violence. A lot of the women we've worked with have stayed in relationships where their partner mistreats them and it feels harder for them to leave: their partners will say things like, “you should be grateful that I've accepted you with your HIV status.” 

But it’s important to add that not every single woman living with HIV will face these issues. It’s why HIV-support organisations are so important, because they provide psychosocial support, which is needed to complement the excellent clinical care that we already have. When these two things are provided together, holistically, this enables women to have a good quality of life. So there are things that can be done to mitigate the challenges which women living with HIV face.

Would you agree that people living with HIV have had a lot of involvement in creating policy change? Or do you think there's been a shift in recent years?

I think it’s both. If you look at the history of organisations like ACTUP, it’s clear that people living with HIV have always been at the forefront. People living with HIV had to grow and learn alongside the scientists. In terms of involvement, I actually think it’s getting better, because we have fought to have a place at the table and to achieve more meaningful involvement.

There still aren’t many women in research, but we're getting there. We are constantly advocating for the meaningful involvement of women in clinical trials. If we look at the history of clinical trials, there traditionally haven’t been many women participants. In fact, a lot of the treatment we take now was probably largely tested on men who were involved in the trials earlier. What we are calling for is the recruitment of enough women in clinical trials, and not just as participants – although that is important - but also being involved throughout the life cycle of trials, from setting the trial questions, being on clinical trial boards to writing and presenting papers.

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