When social norms around age and gender make it difficult for adolescent girls and young women to claim their sexual and reproductive health and rights (SRHR), they are more likely to experience unwanted pregnancies, unsafe abortions and sexually transmitted diseases such as HIV.

PITCH partner the International Community of Women Living with HIV Eastern Africa (ICWEA) is fighting to change this by training young women living with HIV to become SRHR Advocacy Champions. Each woman is allocated to one or more health facilities in her area and will then listen to, and document, the needs and priorities of HIV positive adolescent girls and young women attending the clinics. 

Sylivia Nakalanzi, one of 20 SRHR Advocacy Champions in Uganda, works in Wakiso, a sprawling district in the country’s Central Region. Sylivia was diagnosed with HIV when she was 18. Now 30, she began working as an SRHR Advocacy Champion in October 2016, and has helped affect changes large and small, from persuading the facility she works with to extend its opening times, to providing crucial evidence for an international advocacy campaign on antiretroviral stock-outs in Uganda.

“Because I have been through the situation these young girls are going through I know what it means to have someone speak up on your behalf,” says Sylivia. “I look at these young girls and I can put myself in their shoes.”

When Sylivia was first diagnosed with HIV she did not know anyone who was openly living with the virus. Alone and afraid, she went into denial about her status and did not seek treatment. It wasn’t until Sylivia went to university that she heard about ICWEA and became a member.

“That’s when I started coming out as having HIV, when I started to accept that I was HIV positive,” she says.

 

They started to empower me and I thought; enough, now I must speak up about it

 

Sylivia currently works with one facility and has around 58 adolescent girls and young women on her books, although numbers change all the time as clients move away and others arrive.

“The first time I meet them I talked to them on a friendly level and disclosed that I am also living with HIV, that I tested positive at 18, and that I understand some of the things they are feeling,” Sylivia explains.

 

They can feel we are part of them, we have also had problems, and they form a sense of trust with us because of that.

 

The way Sylivia deals with a client depending on the situation they are facing, which can be diverse as the young women themselves. Some may be struggling to accept their positive status and unwilling to start treatment or may be finding it hard to disclose their status to partners for fear of rejection. In these instances, Sylivia will counsel the young women to help them feel more able to deal with the issues they face.

In other instances Sylivia will raise issues with facility staff to bring about change at the clinic itself. The clinic has now extended its opening hours to accommodate those who have to travel from remote areas of the district who often missed appointments in the past. It has also expanded the range of family planning options it offers to adolescent girls and young women living with HIV and has partitioned off an area in the one-room clinic for their exclusive use, following feedback that a lack of privacy was deterring many from accessing services.

In other instances, the evidence gathered at the facility has been used to effect change on a higher level.

 

In 2017, we realised there were some medications missing

 

“In 2017, we realised there were some medications missing,” says Sylivia. “The facility had run out of medication and was borrowing supplies from other facilities. We gathered all the evidence we could and filed a report.”

Initially, ICWEA presented the evidence gathered by Sylivia and other SRHR Advocacy Champions at a meeting with district health officials, who then elevated it to national officials from the Ministry Of Health, the World Health Organization and the National Medical Stores.

In response, the chairperson of the Uganda HIV and AIDS Parliamentary Sectoral Committee formed a taskforce composed of legislators and representatives from civil society organisation to visit the facilities severely affected by the stock-out in order to establish the level of impact it was having.  

But as the ARV shortage continued more facilities across Uganda became affected, and ICWEA stepped up its advocacy campaign.

“We even got the media on board,” recalls Sylivia. “Our members began appearing on television and radio talk shows to talk about what was happening. The whole country knew what the issue was.”

ICWEA presented evidence on the stock-out at the International Conference on AIDS and STIs in Africa (ICASA) in December 2017 and at an Africa Regional Planning Meeting the following February.

 

After eight months, the campaign paid off

 

United States’ Ambassador Deborah Birx announced that PEPFAR would bridge the funding gap and the Ugandan government publically committed to restocking the ARVs that were needed.

“At my facility the drugs are now there,” says Sylivia.

 

I felt so good when I started to see the young girls finally getting their correct medication and seeing them adhere properly to their medication

 

Sylivia says she hopes the relationship that has been established with the clinic and with the many layers of decision makers at district, national and regional level will continue to bring about improvements – and lead to more young women giving their voices to bring about change.

“It makes me feel good because I know I have been helping these young girls claim their rights,” she says. “I am seeing them live healthier lives and be proud of themselves.

“It’s not easy to live with HIV but what really makes a difference is when you know that someone cares, that someone understands what you are going through. In time, I hope these young girls will learn to value who they are and speak out for themselves, and that they too will become leaders.”