Respect please! No laptops and mobile phones

As part of efforts to mobilise young people living with HIV to 2015 and beyond, Musah Lumumba, a youth advocate from Uganda, reflects on two important meetings which took place in Cape Town last week.

The meetings, called for by youth leadership network Y+ and UNAIDS (see details below) were attended by two youth advocates from the Link Up project: Musah Lumumba from Uganda and Cedric Nininahazwe from Burundi, along with the Alliance’s Africa Regional Technical Advisor for Link Up, Georgina Caswell.

After the events, Musah spoke to Georgina.

Tell us a bit about yourself.

I am a youth and sexual reproductive health and rights & HIV activist from Uganda. I work with the Uganda Youth Coalition on Adolescent Sexual Reproductive Health and HIV/AIDS (CYSRA) and am the co-chair of the SRHR working group of Y+ (a global youth leadership network).

I’ve been living with HIV for 11 years, since I was 16 years old. I am the Link Up focal person in Uganda for GYCA; and as such, I’m working within the Link Up project to advance our advocacy agenda for the health and rights of young key populations in Uganda.

What were you hoping to get out of these meetings?

We have a lot of unfinished business that we need to push forward. For example, there are still a lot of adolescents who have not tested and therefore are not getting the care they need; a number of young people living with HIV who still need treatment; and high numbers of deaths amongst young people living with HIV who are on treatment (more details below).

At the Y+ Leadership strategy meeting (called for by members of Y+ and supported by GNP+ and UNAIDS), I was hoping we would come up with a new strategy developed by and for young people living with HIV to guide our advocacy and activities in preparation for the post-2015 agenda.

At the treatment meeting (hosted by UNAIDS, with ITPC, GNP+ and PACT), I expected to learn more about how we can meet the treatment needs of adolescents living with HIV, including adolescents who identify as being from a key population (i.e. a young man who has sex with other men, a young transgender person, or a young person who engages in selling sex or using drugs), especially in the current restrictive environment.

What were some of the key challenges raised?

We are still lacking coordinated spaces for young people to make their voices heard at the national level. In Malawi for example, they are only just now establishing a network of young people living with HIV.

And we still don’t have the physical structures (youth groups, teen clubs, networks of young people living with HIV) to reach young people and to connect with them in order to support them to get the information and the services that they need to feel empowered and to stay healthy.

Did you make any progress?

So Y+ now has a new strategy and the thing I am excited about is that we will be mobilising groups of young people living with HIV at every level –district level, nationally, regionally and globally - to have a common voice around issues that affect young people.

Sexual and reproductive health and rights is at the core of this. I’m on the Y+ committee which is going to make sure that the new strategy works. Something that is new about our strategy is that it emphasises young people living with HIV working with other youth actors like GYCA, Youth Rise, IPPF youth groups, etc. to help make our voices louder and stronger.

At the meetings we came up with many ideas to improve integrated services – more community mobilisation led by young people; more training for youth activists around treatment literacy and intellectual property issues so we can be better advocate against patents; identifying, documenting and promoting promising practices (including Link Up interventions!); better data capturing tools that include disaggregated data amongst 10-19 year olds.

We also agreed on supporting youth groups this year to take part in the next phase of ACT2015 – led by the PACT – giving small grants to youth-led groups and organisations to do community dialogues on the post-2015 agenda. Their projects will involve reaching out to their Ministries of Foreign Affairs to make sure HIV remains a priority in the post-2015 agenda – with youth specific targets.

Any surprises?

The implementing partners in the room and the UN agencies wanted to see more young people in their committees and involved in their processes and programmes. This is something that we push for as youth activists but I didn’t realise how much the other partners also wanted to see this.

At the Adolescent Treatment meeting, youth participants put forward basic ground rules, including fines of 5 rands every time someone was caught using their mobile phone or laptop during the meeting. I was put in charge of making sure people respected this rule – and I was surprised that everyone did. We collected 185 Rands on the first day and only 20 Rands on the second day – so people checked their emails early that morning before coming to the meeting!

More information

  • The Y+ Leadership strategy meeting (April 14-15, 2014) was called for by young people themselves and supported by GNP+ and UNAIDS. It brought together young people living with HIV globally to reflect on Y+ and look ahead to opportunities to shape global advocacy over the next year.
  • “Galvanizing the movement to scale-up access to optimal treatment and related care for adolescents living with HIV” (April 16-17, 2014) was hosted by UNAIDS, in collaboration with the Global Network of People Living with HIV (GNP+), the International Treatment Preparedness Coalition and the PACT. It was attended by young people living with HIV, established youth leaders and organisations committed to supporting youth advocates.
  • Link Up is an ambitious, five country programme which aims to improve the sexual and reproductive health and rights (SRHR) of more than one million young people living with and affected by HIV in Bangladesh, Burundi, Ethiopia, Myanmar and Uganda. It is being implemented by a consortium of partners, led by the Alliance. Read more.
  • Despite significant gains in scaling up access to treatment, inequity gaps are emerging. Recent UNAIDS data shows that two out of three people aged 0–14 lack access to treatment worldwide. And while treatment coverage data for adolescents is unavailable, UNAIDS estimates that HIV-related mortality among adolescents (15-19) increased by 50 percent over the past 7 years while falling for all other age groups.