Why are young women and girls abandoning life-saving HIV treatment?

Health experts and HIV/AIDS activists in Uganda are concerned over the increasing number of young women and girls in care who are abandoning antiretroviral drugs (ARVs). World Health Organization data shows that Uganda has about 1.5 million people living with HIV including 860,000 women and 80,000 children. But, only 900,000 people are receiving treatment

The biggest hotspots include western parts of the country with a population of over 10 million, where stakeholders are struggling to contain HIV prevalence especially among young people and adults, with this attributed to setbacks like poverty, lack of access to HIV care especially in rural areas, and other challenges undermining the HIV/AIDS response in the country.

Ms. Dorcus Twinabaitu, the HIV Focal Person in charge of Mbarara city in western Uganda has confirmed that many young women and girls stop their treatment within one month to three months after first attending HIV clinics.

“It is of great concern and alarming, and we are struggling to reduce prevalence. Some patients are unable to continue taking ARVs due to their economic hardships. Some say they become so hungry whenever they take the drugs. We try to follow up, but lack of enough budgets to facilitate the fight against HIV/AIDS in Uganda is hindering us,” she said.

“We are also talking about female sex workers who abandon ARVs because they change locations, and it is hard to trace them. Some women and girls also fear stigmatisation, and they abandon treatment. They struggle to cope with these challenges, so we need to monitor and encourage all HIV-positive persons not to abandon treatment,” she added.

“When you don’t have the money to take care of yourself you cannot manage taking ARVs”

In Mbarara city alone with a general population of over 250,000 people, 3,441 young women and girls aged 20-29 enrolled in HIV care between October and December 2023. Uganda AID Commission data confirms that 3,273 are still receiving treatment. Meaning that 168 dropped out of treatment between January and April 2024.

For many, economic issues become a barrier to treatment adherence. Rebecca from Ruti, one of Mbarara city slums with the highest number of sex workers and HIV prevalence rate recently resumed taking ARVs after a three month gap.

“I had shifted to Ntungamo town, and it was hard for me to create a good relationship with doctors there. Traveling to TASO Mbarara was so costly. But now I have returned to Mbarara with my mobile money business. When you don’t have the money to take care of yourself you cannot manage taking ARVs. Yet we need life,” she said.

Stigma and discrimination from healthcare workers, family members and the wider community, also contribute to young women and girls abandoning treatment. “For us sexual minorities, it is worse. Our members are facing discrimination whenever they are picking their ARVs. Some end up abandoning the care because they are harassed that they are LGBTQIA+,” explained a transgender woman in central Uganda.

“You find that you are positive yet other family members are negative. They then stigmatise you. Personally I have been struggling with such kind of stigma,” said Alice a young woman living with HIV in Mbarara city.

“Every end of the month, my neighbours think I have to go and get ARVs. Sometimes I miss going there due to such stigma. And when you miss, some doctors are not friendly, they insult us. We don’t miss intentionally. I am from a rural area where I have to borrow money for transport sometimes. If you don’t have money, you miss. I know that very well,” Dembe another young woman living with HIV explained.

“We must prioritise effective approaches”

Countrywide, statistics from Uganda AIDS Commission, the AIDS Supports Centre (TASO) and other organisations championing HIV care indicate that there is a significant increase in new HIV cases among young women and girls aged 15 to 29 compared to the prevalence among young men and boys of the same age.

These increasing cases of dropouts have been attributed to the impact of a cost of living crisis on young women and girls. With higher unemployment meaning more young women and girls turn to selling sex, often this is with older men and is unprotected.

Experts now want more interventions to support young women and girls to adhere to their HIV treatment.

“We must prioritise effective approaches like using a peer-led model, where the patients can also network and we’re able to track who is still taking the treatment, and who has dropped out. We also have to empower and support people with income-generating skills and resources to boost their socioeconomic capacity… we have to deal with the socioeconomic issues affecting HIV patients,” Mr. Kuzirimpa Julius, Executive Director of Southwestern Uganda Initiative for Community Counseling explained.

HIV in focus

This news story has been published as part of our HIV in focus news network. This is a network of writers and journalists from our focus countries, dedicated to delivering news on HIV and sexual health. The network aims to amplify the voices of communities most affected by HIV and share the stories that matter to them.

About the writer

Aaron Ainomugisha is an award-winning freelance journalist based in Uganda. He is the team leader of Rise News Uganda, a media network focusing on in-depth storytelling tackling unreported and underreported issues in the community.

*Some names have been changed