With Worlds Aids Day on 1st December, HIV activist Angelina Namiba opens up about pregnancy while HIV positive, and shatters harmful myths and misconceptions.
“If you saw me walking in the street, would you think I’ve got HIV?” Dynamic, witty and kind-mannered activist and mother, Angelina Namiba, has spent over two decades working in the HIV field championing the reproductive rights of HIV positive women in the UK, proving that you can live a normal life, even with HIV. Having dedicated her life to helping other woman, particularly mothers, with HIV, Angelina wants them to know that they are not alone and, thanks to modern scientific advancements, a positive HIV diagnosis is no longer a death sentence.
Angelina founded the 4M Network (My health, My choice, My child, My life), an avenue that provides experts in perinatal mentor mother peer support, which shares the information that, with the right care, HIV positive women regularly give birth to HIV-negative babies and by following a doctors’ guidelines, transmission of HIV can be prevented.
This current information surrounding HIV was, unfortunately, unavailable at the time of Angelina’s diagnosis in the early 90s. After a period of feeling unwell right after graduating from university in the UK in her early 20s, Angelina’s doctor recommended she have a HIV test. “The only image I had in my head associated with HIV was that of an emaciated Freddie Mercury towards the end of his life,” Angelina tells us. “All I saw surrounding the subject was negativity. It was scary and I thought I would die. I didn’t think I would be able to cope with a positive result.” Though at the time she was terrified to take the test, Angelina confirms, “If my GP hadn’t told me to take the test, I wouldn’t be alive today. I’m very grateful to him.”
Dealing with a positive HIV diagnosis
A positive diagnosis, however, is never easy to take. “In the same week as my diagnosis, I was offered a job as an information officer within a health authority,” Angelina tells us. “I thought, ‘I might as well keep myself busy while I’m waiting to die.’” Originally from Kenya, having recently moved from Manchester to London and not really knowing anyone in town, Angelina — with her newfound reality — felt alone and secluded. Thankfully, she soon found the right people and peer groups and garnered a new lease on life.
“Three things helped me to cope,” explains Angelina. “The first was a friend who told me she was also HIV positive. She took me to a support group where I met five other women living with it. Seeing them have regular lives gave me the drive to live. If it wasn’t for those women, I wouldn’t be here today.” These peer groups helped Angelina so much that she was motivated to volunteer as peer support herself to others in the same situation — the thing she hails as the second factor that kept her going. “I met incredible people and got a lot out of just being in the same environment and situation as these women.”
The final thing that Angelina claims brought her life was being able to realise her dream of becoming a mother. The stigma and misconceptions around HIV positive women who even consider motherhood, is, to say the least, shocking. Women make up a third of the people living with HIV in the UK, with 42% of them stating that HIV impacted their decisions on whether or not to have children. “We are just regular women,” says Angelina, “with hopes and dreams just like everyone else.” However, even in our day, an alarming 57% of the UK general public still have a patchy understanding on HIV and transmission and do not believe that it can be prevented.
Very few babies are currently born with HIV
Here are the facts: With optimum care, HIV positive women regularly give birth to HIV-negative babies. Effective HIV treatment and other preventative measures have reduced HIV transmission to babies to the very low, and reassuring, levels of between 0% and 0.5%. In addition, what doesn’t seem to be common knowledge is that if HIV is undetectable, it is untransmissible. This is known within the community as U=U, and is an important message that the community is trying to spread. When a person is living with HIV and is on effective treatment, it lowers the level of HIV (the viral load) in the blood. An extremely low level is referred to as an undetectable viral load, meaning that a HIV positive individual cannot pass it on. The bottom line is that, in this day and age, very few babies are born with HIV.
Despite this encouraging data, bias and stigma still exist. “People assume that you can’t have a baby if you are HIV positive,” Angelina says. “There is an assumption that you are to blame or that you did something wrong. Even the language used around the subject is derogatory.” Using examples of common terms such as “mother-to-child transmission” which places the onus on the mother, Angelina, through her activism, tries to bring light to these issues to avoid wording that can be hurtful to women. “We use ‘prevention of transmission’ instead.”
‘A woman who has walked in your shoes is the best peer support’
Angelina’s daughter, and her pride and joy, Hamzaa, was born in 1998, healthy, happy and HIV free. “That day was amazing,” Angelina exclaims of the day she found out that her child was HIV negative. “Dealing with the anxiety of not knowing if the baby will be healthy or not is something that no mother should go through alone.” The women in the support groups and other women in similar situations who helped her cope during this tough time is the main reason Angelina started the 4M foundation. “A woman who has walked in your shoes is the best peer support,” she says.
The foundation offers the following helpful advice to women, mothers and expectant mothers who are dealing with a HIV diagnosis.
Know that you are not alone. Many women living with HIV across the globe have gone on to have their own healthy families. “Even after diagnosis, you are in a better position because you know your status so can get the right support and right treatment.”
Get a community. “The difference in the way I felt when I initially got the diagnosis to after I connected with the community and received the support I needed is remarkable,” Angelina says. “You need that initial support, especially in the beginning. Women have come to us in a dark place, in total despair. After connecting with us and receiving that support, they have gone on to do amazing things. They are shining and thriving and they credit a lot of it to the peer groups.”
Stay well. A healthy baby needs a healthy mother. You have to be well enough, physically and mentally, to look after your baby, and that starts with looking after yourself first.
Stay informed. Don’t feel like you have to know everything. Ask, and make sure the information you receive comes from a credible source.
Trust your doctor. Follow doctor guidelines. “The NHS is fantastic,” says Angelina. “They look after us incredibly well. It’s important to recognize we’ve come a long way. The social services and the service providers work together to enable us to live normal lives.”
You decide. Whether or not you want to share your HIV status is your own choice. Angelina is open about her own diagnosis, and uses it to bring hope to others who may be struggling with their own. However, you are not forced to share if you don’t want to. If you do, the 4M Network shares helpful information on how to tell loved ones or family members and your children.
Don’t let it define you. “You don’t need to stop planning and dreaming because you are diagnosed with HIV,” explains Angelina. “It is a tiny part of your life and doesn’t define who you are. You are much bigger than it, more than it. View it like a squatter; if it’s going to live in your house, it has to abide by your rules. It is possible to live with it, and you can live your best.”
Don’t listen to uninformed, negative people. “With the stigma surrounding HIV, many are worried about what people think of them,” Angelina explains. “Do they pay my rent? I don’t care what they think of me. You can live your life, work, study, have a family, live out your dreams, and do whatever you want, even with HIV. Uninformed and ignorant opinions can’t stop you.”
Angelina is also an ambassador for the new HIV health and wellbeing campaign from Gilead Sciences, Find Your Four, which was developed in collaboration with the HIV community and aims to help people living with HIV to think about four important areas of their broader health and wellbeing (body, mind, everyday life, and information needs), and empower them to talk to their healthcare team or support group about why they matter.