Young people living with HIV in Kenya and their battle against expired antiretrovirals
Since its establishment a year ago, Y+ Kenya, a national network led by and for young people living with HIV, has won some important battles.
One of the most significant came after national coordinator, 23-year-old Cindy Amaiza, realised a friend was taking expired antiretrovirals (ARVs) and called on the network to investigate further.
“Because of the various groups involved in Y+ Kenya, we were able to reach a lot of different adolescents and young people and ask whether their medication was expired or not,” explains Cindy.
We realised that, for a lot of young people, their medication had either expired last month or it was due to expire before their next appointment.
"This was pretty much every young person we asked who was on second-line medication.”
Y+ Kenya met with the Ministry of Health, where officials first denied there was an issue. Undeterred, the network presented the evidence, including confirmation from around 40 young people that their medication was out of date. Ministry staff began to listen.
“They went on to say that ARVs have a shelf life of three months past the expiry date, meaning they are still fine to use during that time,” says Cindy.
But with every passing day after the expiry date, the efficacy levels drop.
"So we argued that, a shelf life may be fine as long as it’s on the shelf, but not when it’s being used by a young person who wants to get 100% from their medicine.” Spurred into action, the Ministry contacted the health centres involved and those affected were swapped to in-date, effective treatment.
That was the first time I felt I could actually do this,” says Cindy. “It was the first time I felt I could make a difference.
Up and running
The idea for Y+ Kenya formed in late 2017 when a group of young advocates living with HIV, including Cindy, began to discuss how they could become better represented in decision-making spaces.
“We thought it would be a good thing if we could create a consortium and speak with one voice, if we were identified as one and could speak as a group,” explains Cindy.
With the support of the Partnership to Inspire, Transform and Connect the HIV Response (PITCH) and the Kenyan people living with HIV network (NEPHAK), Y+ Kenya was born. Before the network began, the Ministry of Health was consulting a group of young people on HIV issues. However, Cindy says many of these individuals were not HIV positive.
“People in that group simply didn’t know the issues we are facing, what our problems are or how to solve them,” she says. “But we have advocated for our own space and we see that, more and more, the Ministry of Health and the National AIDS Control Council want to involve us in their processes.”
Working in coalition
Y+ Kenya currently has six member-organisations, all of which are led by and serve adolescents and young people between the ages of 10 and 30. The organisations have different focuses, including transactional sex, adolescent sexual and reproductive health and rights (SRHR), young people’s mental health and the needs of young women living with HIV, including young female sex workers and young women who use drugs.
“Every organisation has its own specialism and we try to represent all those voices together, as one,” says Cindy. “When we are looking at a specific advocacy issue we will ask each organisation to create their asks, and we will then meet to see which ones are similar and can be combined and which ones should remain separate.
“We have also created a board made up of the different member organisations. When we are invited for a meeting, we will ask a different board member each time to present the key asks, and in this way each organisation is getting more and more involved.
The knowledge and experience each organisation brings is helping to strengthen each of the organisations individually.
"For instance, my knowledge on mental health is poor, but because one member organisation specialises in this they are helping me strategise better on the issue... Or say we are tasked with an activity on SRHR, we cannot do this without the input of the member that specialises in adolescent SRHR.”
Looking to 2020
Y+ Kenya plans to focus on a number of areas in 2020. For Cindy, broadening the network’s membership will be key.
“We still lack a lot of voices, especially when it comes to young men who have sex with men, and we only have a few voices of young people who use drugs,” she says. “We would love to see more and more young people from key populations join us so we can see how we can strengthen our voices together and present evidence-based key asks.”
As well as the victory of the expired ARVs campaign, the network’s growing visibility in official decision-making spaces also suggests Y+ Kenya’s influence is growing.
“My proudest moment came in September when Y+ Kenya was asked to join the table to represent the needs of young people in regards to universal health coverage,” says Cindy. “The National AIDS Council said it would only recognise one youth-led organisation to represent young people in these debates and we were chosen.”
An agenda for change
Another advocacy focus is likely to be on treatment literacy, which will help to ensure the gains of the expired-medicines campaign are not lost.
“Young people need to know why they are taking their medication, because that is the main cause of non-adherence,” says Cindy.
Some young people [who have been HIV positive since birth] do not know what they are taking because they have not been disclosed to, or they have not been disclosed to in the right way.
The network plans to develop a disclosure manual for young people living with HIV, which will include an introduction to different treatment regimens.
“Right now young people only know the colour of their medication,” says Cindy. “They will tell us they take ‘blue’ but that can relate to a lot of different regimens. Say you are in a different county and you forget your medicine, you can get a two-week supply locally, but if you only know you take ‘blue’ they won’t be able to give it to you.”
Another advocacy focus will be on self-care for young activists to ensure they are able to cope with the stresses of their work. The network also hopes to officially register as a non-governmental organisation, a lengthy, complex process that began in February 2019.
“The benefits of being officially registered are many,” explains Cindy. “It is the only way we can open a bank account, open an office, hire staff, get funding – it’s really key to getting the network off the ground.”
For Cindy, improving access to SRHR services for adolescents and young people remains the biggest goal.
“In Kenya it’s still very, very difficult for any young person to access SRHR services, including me,” she says. “If I went and asked for lubricant, for instance…they [the health worker] would become my preacher, telling me the benefits of God. But I’m not there to know the benefits of God, I’m there to access a service that they have and could provide.
“Many times we have asked young people to go and access SRHR services and they have shown they are willing. But when young people actually try, they are often denied services, and they will ask us ‘why would I go there again?’
I would just like to see young people accessing the services they need, whenever they need them, without any obstacles. That would be my dream.
Stay in tune with the latest news from Y+ Kenya on Twitter @ypluskenya