PLHIV implore Parliament to operationalise AIDS Trust Fund

Young people living with HIV have decried the government’s low financial contribution towards the HIV and AIDS fight, saying the country contributes monies amounting to only 12%, leaving the biggest treatment burden of sustaining the 1.4 million Ugandans living with HIV to donors.  

“PEPFAR, Global Fund, Irish Aid, Clinton Health Access Initiative (CHAI)) and other international partners make 68% of the funding towards HIV programs, and the remaining 20%is through support from the private sector,” said Kuraish Mubiru, executive director of Uganda Young Positives (UYP).

Mubiru noted that overreliance on donor support is not only unreliable but also unsustainable. What if the international funding for HIV response ends today?  He wondered. Adding, “We need to operationalize the AIDS Trust Fund (ATF) soonest.” 

Executive Director of NAFOPHANU, Stella Kentutsi (middle front raw) and Dr, Nelson Musoba on the rights.

In July 2014, President Museveni signed the HIV Control and Prevention Bill into law. The law, among other things, provides for the creation of the AIDS Trust Fund, which, Mubiru says its operationalization is long overdue.

He noted that Uganda has not attained the Abuja declaration of 15% of gross domestic product which would be a precursor for increasing funding for health, HIV and integration of other comorbidities like TB, Malaria, and non-communicable diseases (NCDs) etc.

Mubiru was part of the delegation that recently engaged the Parliament HIV committee. The meeting was organized by the National Forum of People Living with HIV and AIDS Networks Uganda (NAFOPHANU), an umbrella organization of PLHIV in Uganda.

Donor fatigue/challenges

Mubiru, who is also the chairperson, Country Coordinating Mechanism (CCM), said there is evidence of donor fatigue in financing the HIV response demonstrated by the flat line curve in the funding over the last eight years.

He said that there has been a 50% reduction in the number of foreign donors funding HIV and AIDS activities in Uganda since 2017 and the trend is likely to continue. Given other global emerging social and economic concerns, there are also shifts in donor priorities like African refuges where a lot of money has been delivered, yet HIV and AIDS is no longer an emergency, being a chronic condition and it is less appealing when you go out there to raise money for it.

We are, however, grateful to our partners for what they have been able to do so far, praying that they continue to work with us in this tremendous fight. But we have to be worried about such scenarios of international overdependence. We need domestic funding to mobilize resources,” he stresses.

The global fund also introduced new funding models which challenge eligibility criteria, thus affecting countries receiving grants, yet many of these countries still heavily dependent on external funding for their national HIV response.

Stigmatized young lady speaks out

Lillian Kihumuro, one of the young people living with HIV, noted that the problem of stigma and discrimination associated with HIV and AIDS and society’s attitude to it is still a big question that needs an immediate answer.

Young people living with HIV before Parliament HIV committee

Describing stigma as more lethal than HIV, Kihumuro gave an account on how she has been stigmatized for the last 25 years, at various stages, in communities and in schools, making her attempt to commit suicide.

While in S3, her fellow leant about her positive status and started ridiculing and running away from her, saying she was going to infect them with the virus. She started hiding and abandoning her ARVs which became detrimental to her health.

Her HIV subsequently progressed to AIDS since she was not swallowing her drugs and her health condition started deteriorating forcing her to swallow multiple drugs at ago. She ended up in hospital to a near-death experience.

“One of my most traumatizing experiences was when I was in S4, about to sit for my final exams. My matron came across my HIV drugs and threw them in the corridors, shouting at me: “Do you want to infect your peers? Sife twakusiga slim-we did not infect you with HIV.”

Integrating NCDs and ageing with HIV

There is a rising trend of non-communicable diseases in Uganda associated with long term use of ARVs including diabetes, hypertension cancer, have compounded TB and Hepatitis B, an increase in ageing population (more people reaching menopause), poor and unhealthy feeding habits and adoption of unhealthy lifestyles.

Parliament HIV committee chairperson, Sarah Kayaga

A study conducted by Joint Clinical Research Centre (JCRC) established that in every five people living with HIV, one has an NCD, thus the need to encourage early diagnosis and treatment of non-communicable diseases among PLHIV in Uganda.

Conversely, the ageing community of PLHIV raises concern over the increase in HIV co-morbidities and non-communicable diseases among other chronic illnesses. More so, PLHIV have been found to be at higher risk of having and dying from NCD due to HIV infection and long-term use of ARVs, JCRC study.

With the increased adherence to antiretroviral therapy (ART), more PLHIV are living longer and the HIV prevalence has consequently shifted to people aged 50-54 and 60-64 years (UPHIA 2020). In Uganda, the burden of disease is highly skewed towards infectious diseases, the top three causes being HIV/AIDS, malaria, and lower respiratory infections.

The Executive Director of NAFOPHANU, Stella Kentutsi, shared a brief of the HIV context in Uganda with the Parliament HIV committee chairperson, Sarah Kayaga, how the country has made significant progress in the fight against HIV and AIDS, with over 1.4 million PLHIV and 1.2 on treatment.

Quoting UNAIDS estimates, Kentutsi said that HIV prevalence is at 6.8% (7.1% among women and 4.3% for men), but it was substantially higher in specific sub-populations and locations. Among young people aged 15-24 years, HIV prevalence is 2.8% and 1.1% among young women and young me respectively.

UPHIA 2021 indicated a shift in HIV prevalence to PLHIV aged 50-54 and 60-64 years. The estimates also indicate that 53,000 people were newly infected with HIV: 5,700 children aged 0 to 14 years and 48,000 adults aged 15 years and older (among them, 28,000 women aged 15 years and older).

She also said that among older adolescents and young people, HIV prevalence is almost four times higher among females than males. HIV prevalence is significantly higher in women compared to men, meaning women make up the bulk of HIV infections.

On the other hand, men have the highest treatment gaps compared to women, meaning that men die more from AIDS-related illnesses compared to women. She noted that although Uganda took a very bold step through the Presidential Fast Track Initiative (PFTI) and launched an initiative to end AIDS as a public health threat, there remain significant gaps which negatively impact the gains.

“Gaps include stigma and discrimination, inadequate domestic financing for health, delays to operationalize the National Trust Fund, inadequate management of Non-Communicable Disease triggered by long term use of ART and among those ageing with HIV, and commodity security among other HIV issues,” she said.

Underfunded sector

The director general of Uganda AIDS Commission, Dr Nelson Musoba said that although they appreciate the additional funding, they are still underfunded, meaning they are unable to undertake many interventions.

He said that their budget has been ranging between sh10b and sh 11b but with the extra funding it has now reached sh 17.9b, saying they need about 25b. He noted that the persons living with HIV are the face of the epidemic, especially the young people who are the majority of the population and are impacted most.

“Despite technology being available, with the medication and all the interventions, we still have a few babies born HIV positive to HIV positive mothers. By the end of 2020, five thousand two hundred babies were born with HIV. This shouldn’t be happening” he regretted.

HIV activists in a group photo with Parliament HIV committee

He said that while stigma still remains an issue among people living with HIV and people with disability, financing remains a big issue for us as a country. About 80% of our HIV monies is still funded by donors, especially the American government.

The Parliament HIV committee chairperson, Sarah Kayaga, promised to engage the relevant leaders to ensure the AIDS TRUST FUND is operationalized and more funds for HIV are put in the subsequent national budget.

“I believe that if we can handle the stigma part, we shall have achieved a greater tough goal. But we cannot achieve that without having resources because most of the money that we receive from our donors are into treatment and management,” she said.

She added, “When it comes to sensitization and awareness creation, there is a very big gap, there is no money there. If our donors are giving us money but it is all focused-on treatment and management, there is no way we can fight this animal called stigma and discrimination.”

“We have no choice but to domestically operationalize the trust fund. But we can only achieve this if we are using a Multisectoral approach (MSA), by deliberate collaboration among various stakeholder groups, for example, government, civil society, and private sector and other sectors like health, environment, and economy,” she said.

Key issues asked to be considered by Parliament

• Demonstrate stronger commitment on creating an enabling environment to ending HIV related stigma and discrimination.
• Prioritize and lobby for increased domestic funding including operationalization of the AIDS Trust Fund.
• Strengthen initiation of a comprehensive integrated health system in response to the management of HIV infection and the growing non-communicable disease (NCD) epidemics.
• Advocate for the 0.1% allocation for HIV programs at the Local Government.
• Rally support to the leaders in their constituencies to integrate the HIV program into other interventions if we are to end AIDS by 2030.
• Community mobilization and sensitization during MP constituency engagements. Let HIV become part of the agenda.