How communities are fighting stigma among patients to curb HIV spread

Three months into her pregnancy, Apio (full name withheld) went on a lone walk to establish the father of her unborn child, only to find a conspicuous new thing about herself.

As she listened to a speaker detail her personal health crisis, Apio, connected with her vulnerability and found solace for her private shame, wallowing intrinsic thoughts of who fathered her kid.

Soon after, diagnosis showed that the 45-year-old was HIV positive – something she had no idea about but that further triggered her curiosity.

“It was a shocking moment. I felt like the world had come down crushing on me. In the instant, I didn’t know what to do,” she recalls.

She explains that at that time, she was staying alone, and had multiple sexual partners.

“I was simply guessing in my mind who the person responsible for the pregnancy might be,” she says, adding that after counselling, she was advised to open up to people in her inner circle, help in identifying her sexual partners so that they can be contacted for HIV testing in order to know their status,” she told Monitor.

The health workers, Apio explained, usually help people who test positive for HIV for the first time and are having trouble identifying their sexual partners—who might not know they are HIV positive or might have gotten the virus. This is done by giving names and contact details of their partners through a process called Assisted Partner Notification.

“It took courage to agree to the idea of helping health workers with identities and details about my partners. One who I strongly thought was responsible for the pregnancy agreed to the idea. He tested positive, was enrolled on treatment, and we agreed to stay together and build a family together. Today we are each other’s’ accountability partner, we help and support each other,” Apio observed.

Health practitioners say this service considerably and safely increases the uptake of HIV testing services (HTS) for partners, in addition to improving case identification and linkage to care detection and care linking.

This has ultimately led to the reduction of HIV cases through HIV/AIDS care interventions, such as increased testing, care, and treatment.

According to the World Health Organization, HIV is currently spreading at 7.2 per cent globally amid hope to end AIDS by 2030.

By placing end users—that is, individuals living with HIV and those at high risk of HIV in diversity—at the forefront of influencing service quality through their own lived experiences with the utilization of the HIV/TB services, Community-led monitoring (CLM) improves the quality of HIV/TB services. CLM is used to monitor the provision of these services.

Uganda began reporting a surge in HIV cases in 2012, which is when the CLM approach that is now being implemented in 80 districts was first created.

The HIV indicator survey conducted by the Uganda Aids Commission (UAC) revealed a seven per cent incidence and prevalence of HIV at the time, suggesting that there was a problem with the HIV response.

Consequently, national communities of practice for HIV/AIDS, such as the Health Gap, the International Community of Women Living with HIV Eastern Africa (ICWEA), the Coalition for Health Promotion and Social Development (HEPS-Uganda), the National Forum of People Living with HIV, the Action Group for Health, Human Rights and HIV/AIDS, the Community Health Alliance Uganda, and the National Community of Women Living with HIV, embarked on a fact-finding mission aimed at clients receiving HIV services.

These community organizations used this information to create a 10-point action plan that calls for community involvement, AIDS development partners, and Ugandan government leadership to prevent new infections and save lives.

After this action plan was made public in the New York Times, the US PEPFAR program was one of the first to take action, removing the barriers to new patient enrolment.

“CLM is distinct from other quality-improvement approaches because communities highlight challenges at health facilities where HIV services are delivered,” explains Beatrice Ajonye, the CLM Project Coordinator.

Among the noteworthy ones are: treatment literacy, retention, viral load suppression, stigma and discrimination, and the consistently high rates of new HIV infections.

The WHO stated in a statement on World Aids Day in November of last year that communities have shaped the HIV response, from combating stigma and discrimination to promoting access to affordable interventions and community-led services that prioritize people with lived experience.

“We call for global solidarity with communities today and every day,” said Dr Meg Doherty, WHO Director of Global HIV, Hepatitis, STI programmes.

“The leadership of affected communities has been vital to moving forward the HIV response, despite the legal, economic and social barriers they face,” she added.

President Museveni even reaffirmed that on the same day, urging citizens to practice prevention as the primary tactic and solution in the fight against HIV/AIDS.

The veteran Ugandan leader said: “you should counsel your children from the tender age that even though treatment is available, if they get infected, the virus suppresses their health. So, to get full potential of their lives, they must avoid this virus.”

More than 50,000 people have contracted HIV/AIDS in Uganda in the last two years, according to recent UAC data.

Additionally, an average 17,000 people die from AIDS-related causes each year.

The age range of these new infections is mostly among young girls and women aged between 15 and 24, which equates to roughly 25,000 individuals annually and 68 people every day.

The HIV fight in Uganda has long been undone by stigma with limited community voice in addition to minimal CSOs involvement.

With support from the US President's Emergency Plan for AIDS Relief, CLM is currently looking for a solution to the issue on a global scale.

It is currently being scaled up through the introduction and expansion of pre-exposure prophylaxis (PrEP), enhanced index testing implementation, enhanced gender-based violence programming and stabilized pharmaceutical supply chain systems.

In addition, it has expanded point-of-care HIV testing for HIV-positive children, promoted policies and guidelines for the implementation of harm reduction programs for drug users and injectors, aided in the creation of harm reduction packages of services for MAT users, and resulted in the standardization of service packages.