Nsanje young people living with HIV feel neglected

High discrimination and lack of a conducive environment to access antiretroviral (ARV) drugs has led to having few youths living with HIV on treatment and many others defaulting treatment. Our Contributor JOSEPHINE CHINELE explores the life-threatening challenges that Young People Living with HIV (Y-Plus) are facing in Nsanje.

She was 13 years old when her mother, who was already unwell, had a domestic injury on her leg, which later became a big wound.

“I was young so she never told me she had Aids….I cleaned up her wound and handled any bodily fluids with my bare hands…,” recalls 22-year-old Diana.

“I suspect to have contracted HIV then….After her death, I had frequent, unusual illnesses. My guardians took me for an HIV test, it was positive…” she reveals, sounding unapologetic, with an established sign of deep acceptance clearly showing through her eyes.

Wearing her nude show muscle top, her long natural hair smartly knotted with a white ponytail, talking through her black mask, Diana goes on to confidently disclose: “I was initiated on ARV drugs in Blantyre, but I regularly missed the medication. At times there were no drugs at the nearest facility. I then moved to Nsanje to live with my grandparents.”

Unfortunately, she was later impregnated by a fisherman.

“He is aware and okay with my HIV status…We are not yet married. He has to first follow the Sena culture. He needs to pay my bride price and clear all other cultural requirements. He is now in Salima,” she explains.

Diana, who now has a six-month old baby, narrates that it has not been easy to be a Young Person Living with HIV (Y-Plus) in the district, citing limited access to ARVs for youths in hard-to-reach areas, poor access to information, lack of youth-friendly sexual and reproductive health services [especially in hard-to-reach primary health facilities], discrimination and lack of inclusion in district decision-making committees.

“I wish, as Y-Plus, we could be involved in district plans and implementation… I am privileged that my rights can’t just be violated because I am a member of the National Y-Plus Malawi grouping…But many youths here in Nsanje hide their status to avoid being discriminated against,” says Diana who returned to school after she delivered her baby. She is now in Form Three.

Diana shares she knows of three Y-Plus who have defaulted treatment due to long distances to collect medication.

Random interviews among a few Y-Plus who disclosed their statuses (like Diana), indicate that the Y-Plus are suffering in silence. They are sidelined in most district planning activities and this has led to having a few declaring their sero-status. The Y-Plus indicate that they feel their health rights are ignored.

Twenty-one-year-old John echoes Diana’s concerns, sensing he is able to access medication because he lives near a health facility. He stresses that he has many colleagues living in hard-to-reach areas such as Nkhutche, Nyenyezi and Nthondo, who need to cover a long distance to access ARVs.

“If we were included in decision-making committees, including budgeting, we would lobby for more medication to be taken to hard-to-reach areas and possibly also lobby for the construction of more health facilities in these area.

“The only hope we have is the district youth officer whom we had an audience with two months ago, but he hasn’t reverted since,” he says.

Eighteen-year-old Laura says there are no youth-friendly spots to accommodate Y-Plus and there is lack of support from some parents and guardians.

“My time is torn between going to school and observing refill dates. At times health workers don’t understand. They shout at us without hearing our side of the story. Some aren’t free to share such experiences with parents or guardians due to lack of openness. I know a colleague who defaulted treatment because his parents blamed him for the contracting virus due to promiscuity,” she says.

National Association of Y-Plus Malawi interim coordinator Grace Ngulube says although the organisation does not have documented defaulters’ data due to funding constraints, the grouping is aware that many Y-Plus are defaulting treatment due to long distances, discrimination and lack of support.

“In extreme cases, some Y-Plus have committed suicide. Y-Plus living in rural areas are the ones defaulting the most. There is hidden stigma whereby Y-Plus are sidelined silently, with no one actually pointing fingers at status but it is obvious. There is little involvement of Y-Plus, especially at district level. At national level, at least we have been involved in many ways,” she explains.

Health centre management committee chairperson Mzinga Mulaphandevu says his committee has no record of Y-Plus, neither has it received any complaints about their exclusion in committees or any of the issues raised.

“We have no Y-Plus who disclosed their status to us, neither do they report any challenges for us to assist them. I’m aware that in most cases the Y-Plus living in hard-to-reach areas are assisted by NGOs,” he says.

Nsanje district youth officer (DYO) Richard Juwawo says the district currently does not have a vibrant Y-Plus and his office asked a local non-governmental organisation, Tiphedzane Community Support Organisation (Ticoso), to assist in mobilising them to have a network and be incorporated into existing structures.

“It is through that process that they can be involved, unlike now when they are scattered. It is hard to work with a group that is like that. My office is aware of their needs but they first need to be organised, hence this initiative,” says Juwawo.

He says there are two youth representatives at area and village development committees where the district council consults on the capital budget on various developments to be included in the budget.

“Y-Plus are not included because they have no vibrant structures that would enable them to be integrated into other existing networks and thereby giving them a chance to voice out their concerns,” he promises.

The DYO, however, says his office is not aware of any Y-Plus discrimination issues. “No one has ever logged a complaint about being discriminated against in activities done here or services offered in the district.”

Ticoso has mobilised youths living with HIV to give them a voice to advocate for their treatment rights and also their inclusion into the budget preparatory processes at Nsanje District Council.

Ticoso executive director Mike Dansa, says a rapid survey which his organisation conducted with support from Action Aid Malawi, established that Y-Plus and young people have difficulties to access sexual and reproductive health (SRH) services from health facilities in the district.

“The Y-Plus are particularly sidelined in many ways such as leadership, and they are not targeted in district budgets,” observes Dansa.

In Nthondo area, for instance, Dansa cites, there is no health facility. Y-Plus of this area, or even adults have to walk long distances to access services and ARVs.

“We are assisting in mobilising these Y-Plus so that they may take part in the district activities and voice out their needs,” he says.

National Aids Commission’s 2020 HIV and Aids estimates indicate that about a third of all new HIV infections in 2020 were among young people aged 15-24. The report also highlights that there is a large treatment gap among this age group.

Nsanje District Health Office statistics indicate that the district has 23 311 people living with HIV who are on treatment and 2 781 of them are youths.

The district hospital’s youth-friendly health services coordinator Alinafe Zaina confirmed that young people living with HIV are defaulting treatment, acknowledging that this is a long standing issue.

 “This is due to many reasons, including long distances to facilities. This challenge has been there for so long. As a district, we are trying everything possible to get drugs to their communities such as using our six health posts of the district. Some partners will also soon begin providing ARVs to the facilities,” he said.

A January 2018 Management Sciences for Health Technical Brief highlights that poor access to and uptake of HIV services contribute to the vulnerability of HIV-infected adolescents. Compared to adults, adolescents tend to be less adherent to antiretroviral therapy.

The brief further says adolescents living with HIV also appear more likely to engage in risky behaviours compared to children and adults.

“Young adults—aged 15-24—are the highest-risk age group for loss to follow-up, increasing the risk of defaulting on treatment, and Aids remains the leading cause of death among adolescents in Africa,” reads the brief in part.

Through Ticoso’s initiative, Diana, John and Laura are part of the Y-Plus behind a yet to be registered youth club.

“Should this materialise, these Y-Plus could help in reducing the high default rate among this age group.