Uganda

The World Health Organization estimates that, globally, more than 1 billion people (15% of the world’s population) have a disability. Disability is increasing in prevalence due to ageing populations, trauma, accidents and chronic health conditions, including HIV, tuberculosis (TB) and COVID-19. 

Persistent discrimination against and exclusion of people with disabilities, in particular women and girls with disabilities, increases their vulnerability, including their risk of HIV infection. People with disabilities, in particular women and girls with disabilities, also experience barriers to accessing HIV services and are left behind in HIV policy-planning, programme development, service delivery and data collection.

People with disabilities face stigma and discrimination in families and communities, lack transport to health-care facilities and are faced with poor attitudes of health workers while seeking health care.

Since 2004, the AIDS Service Organization (TASO), based in the Mulago Hospital Complex in Kampala, Uganda, has attempted to reach out to people with disabilities. However, it has had limited success due to the complexities of community-based care.

In 2016, in response to these challenges, Positive Women with Disabilities (POWODU) was formed out of TASO to pay special attention to people with disabilities living with HIV in order to reduce AIDS- and TB-related deaths, stigma and discrimination and to promote sexual and reproductive health and rights.

POWODU is headed by Betty Kwagala, a formidable advocate, trainer and woman living with HIV who has 25 years’ experience serving as a counsellor at TASO Mulago. Ms Kwagala is a respected and well-known figure in the community, who has uplifted the lives of many people living with HIV in Uganda.

POWODU, in partnership with TASO Mulago, reaches out to people with disabilities in the urban districts of Kampala, Wakiso and Mukono. According to TASO’s client register, there are more than 13 000 people with disabilities in Kampala and Wakiso enrolled into HIV care. Seventy per cent are women and the majority are homeless.

HIV testing and TB screening are integrated into every POWODU community outreach. “The services are always offered near to where people with disabilities reside because of mobility and transport challenges,” says Ms Kwagala.

If a client tests positive for HIV, POWODU offers immediate initiation of HIV treatment, as per the Ministry of Health guidelines. If a sputum TB test is positive, POWODU will refer the case to the main laboratory for further investigation and proper management. POWODU will then follow up, and, with the support of a TB focal person, arrange pick up for the client in a TASO van to escort him or her to receive the appropriate health service.

Other services offered on site by POWODU include sensitization on adherence to both HIV and TB treatment, prevention of HIV, TB and COVID-19 and accurate information on sexual and reproductive health and rights among people with disabilities.

“The COVID-19 pandemic has led to clients who have been lost to follow-up because they are homeless or reside in informal settlements. The lockdown caused more challenges, such as lack of food and a significant disruption to the usual activities that give them some income, such as begging,” says Ms Kwagala.

During the COVID-19 lockdown, UNAIDS supported 200 people with disabilities living with HIV with food rations, personal protective equipment and personal hygiene kits. It also supported a project to equip 40 people with disabilities with skills on how to identify income-generating activities. They were provided with popcorn-making machines and groundnut grinders.

TASO members were provided with megaphones and sensitized members of their communities on HIV, TB, COVID-19, sexual and reproductive health and gender-based violence.

“POWUDU and TASO have shown remarkable resilience by putting people at the centre during the COVID-19 pandemic by ensuring that people with disabilities living with HIV are safe and not left behind,” says Jotham Mubangizi, UNAIDS Country Director, a.i., for Uganda.

A spontaneous HIV test that yielded a positive result changed Martha Clara Nakato’s life forever. When Ms Nakato, who lives in Uganda, found out she was living with HIV, she was 14 years old and had never had sex.

“I accompanied my twin brother only to support him to take up the test. I didn’t know taking one too would change my life forever,” she says as she recalls her shock and confusion at her result.

Her brother’s HIV test came out negative. 

Ms Nakato soon discovered from her father that she was born with HIV. She is the only one of her eight siblings who contracted HIV from her mother. She lost her mother to AIDS-related illnesses when she was just five years old. 

“I don't know why this had to happen to me. Maybe I was the lucky one; maybe there was a purpose meant for me. When I look back, I now know the only way you can find your purpose in life is to think about that one thing that hurt you the most,” Ms Nakato says.

Ms Nakato has transformed her pain to power and works as a human rights defender and HIV advocate with the Uganda Network of Young People Living with HIV/AIDS (UNYPA). 

In 2019, she was recognized as one of the Global Fund to Fight AIDS, Tuberculosis and Malaria’s five faces that championed the worldwide sixth replenishment campaign.

“I do a lot of mentorship and motivational speaking,” says Ms Nakato, who uses her own story to demonstrate how adherence to HIV treatment can help people living with HIV live a full and healthy life. 

Much of Ms Nakato’s advocacy and mentorship involves interacting with young people in their communities with in-person dialogue. Following the COVID-19 outbreak, she had to rethink how to reach young people while adhering to the social distancing measures that followed because of the pandemic.

“Most of those engagements that involved face-to-face were not able to happen. Looking at young people in the rural areas who don’t have access to the Internet or a smartphone, we really had challenges reaching out to them,” Ms Nakato says.

However, Ms Nakato and her team realized the importance of reaching out to young people on social media platforms, such as Facebook, to get her message across. 

UNAIDS provides financial and technical support to the annual Y+ beauty pageant and youth summit, events that are organized by UNYPA. The pageant crowns a Mr and Miss Y+, encouraging young people living with HIV to come together, celebrate their beauty and address HIV-related stigma and discrimination.

During the COVID-19 outbreak, UNAIDS ensured that community-based organizations such as UNYPA had access to national platforms—for instance, the national COVID-19 national secretariat—so that organizations could engage in dialogue with the government and thereby provide better relief and food support to communities in need.

Ms Nakato was born in 1996, a time when HIV treatment was inaccessible in Uganda. In that year alone, 34 000 children between the ages of 0 and 14 years acquired HIV. 

Today, 95% of women living with HIV in Uganda have access to services to prevent vertical (mother-to-child) transmission of HIV. There has been a significant drop in vertical transmission and the country has achieved an 86% reduction in HIV infections among children since 2009. 

“I don’t want to give birth to a child who is HIV-positive or see any other young woman do so. We now have the power to prevent this from happening, not like many people in the past who didn’t have that chance,” she says. 

As an AIDS activist, Ms Nakato has plans for herself and society, hoping to see an AIDS-free world. She stresses the importance of adhering to HIV treatment to help make that a reality.

“One thing I know is that I am the proof of treatment. I am proof of what self-love is,” she says.

UNAIDS provides financial and technical support to the annual Y+ beauty pageant and youth summit, events that are organized by UNYPA. Above, Nabanoba Vivian Alice and Niwamanya Hillary, winners of the Y+ beauty pageant. Kampala, Uganda, October 2019. Credit: UNAIDS

GENEVA, 12 January 2021—UNAIDS is concerned that the vilification of lesbian, gay, bisexual and transgender (LGBT) communities in Uganda could lead to heightened violence, stigma and discrimination against them and reduce their access to HIV and other essential services. In a recent media interview, the President, Yoweri Museveni, described being LGBT as a “deviation”.

“Using offensive language that describes LGBT people as “deviant” is simply wrong,” said Winnie Byanyima, Executive Director of UNAIDS. “Stigma and discrimination based on sexual orientation violates rights and keeps people away from HIV testing, treatment, prevention and care services. The HIV epidemic can never end while some groups of people are excluded from health services.”

UNAIDS advocates with legislators, other government authorities and civil society globally to establish anti-discrimination and protective laws to eliminate the discrimination and violence faced by LGBT people and to advance the right to health for all people without exception.

Uganda has made considerable progress against the HIV epidemic in recent years. Of the estimated 1.5 million people living with HIV in Uganda in 2019, around 1.3 million were aware of their HIV status and 1.2 million were on treatment. More than 95% of pregnant and breastfeeding women living with HIV in Uganda receive antiretroviral therapy to keep them healthy and prevent transmission of the virus to their children.

However, in Uganda gay men and other men who have sex with men are less likely to have access to the HIV testing, treatment, prevention and care services that could keep them healthy and well, in part because of the stigma and discrimination they face in health-care settings and throughout society. 

“It’s clear that to end the AIDS epidemic in Uganda there is a need to build a more inclusive society where everyone enjoys the right to health. UNAIDS stands ready to work with all partners to end stigma and discrimination against the LGBT community and achieve the full respect of their universal human rights,” said Ms Byanyima.

UNAIDS

The Joint United Nations Programme on HIV/AIDS (UNAIDS) leads and inspires the world to achieve its shared vision of zero new HIV infections, zero discrimination and zero AIDS-related deaths. UNAIDS unites the efforts of 11 UN organizations—UNHCR, UNICEF, WFP, UNDP, UNFPA, UNODC, UN Women, ILO, UNESCO, WHO and the World Bank—and works closely with global and national partners towards ending the AIDS epidemic by 2030 as part of the Sustainable Development Goals. Learn more at unaids.org and connect with us on Facebook, Twitter, Instagram and YouTube.

Nearly 40 years into the HIV response, improved access to HIV treatment means the 26 million people living with HIV globally who are on HIV treatment can live long and healthy lives. But what does health care for an ageing population of people living with HIV look like?

Having lived with HIV for more than 30 years, this is a question 66-year-old Stephen Watiti from Uganda has been considering. 

“My needs are going to be changing … and in the future most of the people living with HIV will be 50 years and above,” said the celebrated medical doctor, who is based at Mildmay Uganda Hospital, in Kampala.  

In the eastern and southern Africa region, approximately 3.6 million of the 20.7 million people living with HIV are over the age of 50 years.

The new UNAIDS World AIDS Day report, Prevailing against pandemics by putting people at the centre, calls for a differentiated HIV response that is more intensive and more effective at ensuring that we reach those who until now have been left behind. This includes expanding treatment access equitably by providing people-centred, age-sensitive and integrated health services. 

People living with HIV should be supported to lead long and healthy lives and people over 50 years of age should have equal access to social protection, employment and social integration.

Mr Watiti said little attention has been given to this phenomenon. “We have worked a lot in paediatric HIV. In geriatric HIV, there is no person who is trained in preparation for that,” he said. 

Back in 1999, a period void of HIV treatment and substantial HIV knowledge and training among people in eastern and southern Africa, Mr Watiti experienced multiple AIDS-related illnesses. He had a “frightening” near-death experience where his CD4 count plummeted. His ailing body had to battle tuberculosis, cryptococcal meningitis and Kaposi’s sarcoma—all at the same time. 

Mr Watiti started HIV treatment in 2000. However, due to the affordability and accessibility of the antiretroviral medicines in his regimen at that time, his adherence was poor, and he fell sick due to treatment failure.

In 2003, with a new antiretroviral regimen, and the unwavering support of a counsellor from the AIDS Support Organization in Uganda, Mr Watiti realized he was “no longer dying.”

During this period, he realized the need for him to educate and inspire his patients living with HIV. And so he returned to work.

Mr Watiti has come a long way. Despite living with uncertainty as part of an older generation living with HIV, Mr Watiti intends to live a full life, practising medicine well into his seventies.

“I’ll have to keep swallowing this medicine unless there’s a cure by then,” he said.

However, Mr Watiti wants to know what can be done to ensure that people living with HIV who are on treatment have a good quality life, including access to mental health services.

This is a question he raised during a conversation with UNAIDS Executive Director Winnie Byanyima at the launch of the UNAIDS World AIDS Day report.

Ms Byanyima agreed. “Considering that someone is going to live off a tablet for the rest of their lives and sometimes that person is living in poverty or hiding their secret because of stigma, this is a huge challenge of the mental and emotional well-being of a person,” she said. “People living with HIV need a wider comprehensive package of services, including mental health. The AIDS response cannot be narrowed just to the tablet.”

Mr Watiti was a beacon of hope for people who were living with HIV at a time when surviving AIDS was a grim prospect and is an example of resilience for people living with HIV today. 

Mr Watiti says as he counsels his patients to overcome HIV stigma and about the importance of diligently taking their medication, it was as if he was talking to himself: “To tell you the truth, if there’s one person I've helped the most, it is me.”

Adrian Jjuuko heads up the team at Human Rights Awareness and Promotion Forum (HRAPF) in Kampala, Uganda.

He is the dictionary definition of an ally—a heterosexual lawyer who defends people who live on the margins of Ugandan society: lesbian, gay, bisexual, transgender and intersex (LGBTI) people, sex workers, refugees, people who use drugs and women who are survivors of domestic violence.

Mr Jjuuko founded HRAPF in 2008 to create awareness of human rights and provide legal support to marginalized people, mostly members of the LGBTI community.

“This is not the favoured job of a lawyer in Uganda,” he laughed. “When young graduates come out of law school, most would choose commercial litigation. I chose this. I chose it because I love it,” he added.

HRAPF started out as an organization that represented marginalized people but increasingly took on cases from members of the LGBTI community. Mr Jjuuko said that this is because, in Uganda, LGBTI people “are generally not treated like citizens with rights—not by law, culture or religion.”

Because of the stigma around the work that HRAPF does, “other lawyers don’t think we are real lawyers,” said Mr Jjuuko. “You live with the professional discrimination,” he sighed.

Uganda is one of 13 countries in the eastern and southern African region that criminalizes same-sex sexual relations. Under the Penal Code, “carnal knowledge against the order of nature” between two males carries a potential penalty of life imprisonment.

Evidence shows that the more marginalized, stigmatized and criminalized people are, the higher their vulnerability to HIV and violence.

Roughly one quarter of the 580 000 new HIV infections in the region in 2019 were among key populations and their sexual partners.

In sub-Saharan Africa, one in three transgender women have been attacked and 28% raped at least once in their life.

HRAPF represented the 14 gay men, two bisexual men and four transgender women (known as the COSF20) who were arrested in late March 2020 when police raided the Children of the Sun Foundation premises, an LGBTI shelter on the outskirts of Kampala. They were between the ages of 18 and 25 years and had been thrown out of their homes because of their sexual orientation and/or gender identify.

Police said the young people were violating social distancing rules that banned gatherings of more than 10 people in public spaces, restrictions imposed due to the lockdown in response to the COVID-19 outbreak.

However, they were not in a public place, but the place they called home.

Mr Jjuuko said this is one of many cases where COVID-19 restrictions are being used to violate human rights. The young people were arrested on the site on the suspicion of homosexuality and the charge was later changed at the police station to take advantage of the government restrictions.

It took Mr Jjuuko and his colleagues 43 days of applications, letters, meetings and court dates for HRAPF to be granted access to their clients; another two to actually see them; another five to get the charges dropped and the first 19 released, and yet another seven days for the final detainee to be released.

Mr Jjuuko and his colleagues had to hitch rides on cargo trucks en route to the prison, and use motorbikes and bicycles, to access their clients because of the restrictions placed on the operation of motor vehicles during the lockdown.

During the 50 days they spent in jail, the young people were subjected to gross human rights violations, such as beatings with wire, burning with pieces of firewood between their thighs, and, in one instance, an anal examination in a bid to “prove” homosexuality.

This is not the end, said Mr Jjuuko. HRAPF wants the prison authorities to dismiss the staff who perpetrated the violations and damages paid to the young men and women.

HRAPF’s work has turned from legal aid to humanitarian assistance, said Mr Jjuuko. The young people need food. A place to stay. It’s not enough to get them out of jail when they have no means and nowhere to go.

“The reason we do this is because no one else is doing it. There are basically no other legal aid service providers for LGBTI people. That is a feeling of contribution that you can’t take away.”

COVID-19 has made things even more difficult.

“We all need to come together and fight COVID-19 but we must not forget about marginalization and discrimination. How can we tailor our support to marginalized people? How do we protect people’s rights … think about people who need access to medicine and people who can’t use public transport? We need to think about the multiple dimensions of vulnerability,” he said.

UNAIDS continues to support the work of HRAPF to advance human rights and the right to health among key populations in Uganda. In 2020, it provided technical and financial support for a six-month project, which included sensitization meetings on HIV and human rights for key population groups from civil society, including information on the provision of free legal services to members of the community who are detained.

On the consequences of his work on his life, Mr Jjuuko shrugged and said, “It doesn’t matter. You just learn to live with it.” And in the same breath, he added,” As a lawyer, you must fight like a gladiator for your client to be protected.”

Officially, she calls herself Juliana, but she also goes by the name Anna Morena and has an organization of the same name—the Anna Foundation Uganda.

The small, youth-led organization promotes sexual and reproductive health and rights, HIV prevention, advocacy, research, entrepreneurship and fundraising for the transgender community in central Uganda.

As a response to the malnutrition experienced by transgender people because of the COVID-19 outbreak, the foundation has raised US$ 1600 from a private donor to support transgender people and their dependents with food relief, which has reached more than 200 people.

Members of the foundation volunteer their time to conduct referrals for mental health and supply medical services, including deliveries of treatment and hormone therapy to transgender people who cannot currently access facilities due to the COVID-19 pandemic.

Ms Morena named herself and the foundation in memory of a friend who moved to Kampala, the capital of Uganda, at the age of 16 years. She was working as a sex worker to survive, met a man in a nightclub one night and was found dead the next day.

“I thought that maybe I could be “Anna” too, because she had a dream—to live as a normal person,” said Ms Morena wistfully.

Ms Morena doesn’t like labels, but she refers to herself as a “trans girl” because she wants people to know that she’s “not just a sex worker.”

She is open about being a sex worker so she can encourage others to come out and speak about it. She also volunteers to educate people about being transgender, which she does “out of love.” The sex work is to put food on the table.

“Most of the trans women I know are doing sex work. They are usually between the ages of 16 and 25 years, a time when hormones are high and one’s understanding of sexuality and gender identity is still developing,” she said.

Globally, transgender people are 12 times more likely to become infected with HIV than the general population. Nineteen countries worldwide, including Uganda, prosecute and/or criminalize transgender people.

In their daily lives, transgender people experience exclusion from family and society, barriers to employment and extreme forms of sexual, physical, emotional and psychological violence. According to Ms Morena, the COVID-19 pandemic is making things worse.

“COVID-19 has led to an increase in gender-based violence and a scarcity in commodities such as condoms and lubricants. Most sex workers are still doing sex work so that they can survive and we are seeing a rise in infections,” said Ms Morena.

She said prices for essentials such as mobile phone data have risen, making it harder for community-based transgender organizations to stay connected to their members.

In the absence of funding for vocational training, the only choice for transgender people who want to make a difference is to volunteer, said Ms Morena, because there is limited donor funding for transgender organizations. “Donors are very specific about what they will support, meaning there is a lot of competition for funding,” she said.

In addition, there is limited data on transgender people in the eastern and southern African region and Ms Morena believes that donors are not primarily interested in funding community-led research. But, she said, research is critical. “It is a way to help our governments understand the specific needs we have; it helps influence change and policies.”

Influencing change is something that Ms Morena does every day. During workshops run by the foundation, in partnership with other transgender and female-led community organizations, she tries to educate people about what it feels like to live in a transgender body by getting them to draw a picture of their bodies on a piece of paper they place on top of their heads.

Drawing one’s body out of sight always guarantees that it comes out a mess. This is Ms Morena’s advocacy punchline.

She holds up the drawing and tells them, “This is the pain I have to go through daily. This is how the world sees a transgender person.”

“This is not the body I want. I want to transition, but I don’t have the support of my family. I honestly love them. At times I try to do what I can to make them comfortable, but I also need to be happy,” she said.

This is the reason why the transgender community is so important, said Ms Morena. Solidarity helps.

“Trans women need safe spaces, places to stay and access to mental health services,” said Ms Morena. “The Government of Uganda is not willing to facilitate such spaces, so community-based organizations must bring these services until the fight for decriminalization has been won.”

Kuraish Mubiru wakes up at dawn every day to get refills of antiretroviral therapy from different health facilities before making deliveries to his peers and other members of the community living with HIV. This has been his routine for the past seven weeks.

Mr Mubiru is the Executive Director of Uganda Young Positives (UYP), a community-based organization that brings together young people living with HIV, mainly from the informal sector. With more than 50 000 registered members, UYP focuses on scaling up HIV prevention, care and support services for its members.

When Yoweri Museveni, the President of Uganda, first addressed the nation on 18 March on the global COVID-19 pandemic, among the measures put in place were restrictions on mass gatherings, the closure of most businesses and the cessation of public transport. Since then, people living with HIV and tuberculosis have found it difficult to access their routine medical care or essential medicine refills.

Following the measures, Mr Mubiru started receiving calls from young people whose livelihoods and HIV treatment were dependent on facilities that had been closed. The impact of the restrictions was beginning to be felt. Young people were no longer able to move to their respective health facilities to access care and treatment nor afford a meal.

Although there have been efforts by health centres and civil society organizations to transport antiretroviral medicines closer to the people, a good number, as reported by the community support groups and health centres, have not received their antiretroviral medicines owing to fear of stigma and discrimination by the community and family members.

“This was a trying time for the community and a huge test of our resilience because our peers needed us more than ever,” said Mr Mubiru. “We had to come out of our comfort zone, act and think fast not to lose all our gains in the national HIV response in the wake of COVID-19.”

Mr Mubiru volunteered to support his fellow peers to access HIV treatment using his own car. In the beginning, he used his own resources to fuel his car and purchase food, but he soon ran out of money.

Initially, one of his biggest challenges was being able to fuel his car to continue with the daily refills, but the further tightening of restrictions on private transport meant that Mr Mubiru could not continue with deliveries. Through the support of UNAIDS, the Infectious Disease Institute and the Ministry of Health, he obtained a permit granting him permission to enable him to continue supporting his community.

During one of his routine deliveries, Mr Mubiru’s car was impounded by the police for more than four hours and he was made to wait. It took the involvement of the police leadership to have the car and Mr Mubiru released. On many occasions, he has been stopped by the police, demanding to know where he is going—those delays at times force him to get home past the curfew time of 19:00.

Mr Mubiru’s resolve to support his community is unwavering. He knows that not everybody would be comfortable visiting the nearest health facility for their antiretroviral refills, disclosing the reason to the local authorities for them to be granted movement or have a community organization’s branded car parked outside their home.

“Instances like these propel me to get out of bed every morning. We are still in this together. COVID-19 will end, and life will continue,” he says.

On average, he delivers eight antiretroviral refills per day to his peers. Besides the long distances and hard-to-reach places he has to go to, food is one of the biggest challenges, since hunger compromises people’s adherence to their medication. Stigma and non-disclosure also pose a great challenge for people to access HIV treatment from a nearby facility.

“The COVID-19 outbreak is having a major impact on people living with HIV,” said Karusa Kiragu, UNAIDS Country Director for Uganda. “We must ensure that adherence to HIV treatment is not compromised. This can be achieved through multimonth dispensing of antiretroviral therapy, supported by a strong community-led response,” she said.

The new Executive Director of UNAIDS, Winnie Byanyima, has visited the country of her birth, Uganda, on a working visit.

During her meeting with the Minister of the Presidency, Esther Mbayo, she commended the efforts of the President of Uganda, Yoweri Museveni, in the response to HIV. She highlighted the US$ 7 billion funding gap in the global AIDS response, saying more needs to be done domestically. “Today, Uganda has 93% of the AIDS response funded externally,” she said. “Our friends are the ones keeping us alive, but we cannot depend on them forever.”

She added that many African countries, including Uganda, will soon become middle-income economies and therefore will receive less international aid. Throughout the day she reiterated the same message to United Nations staff, stakeholders and partners―find ways to overcome stagnating levels of funding and reduce financial waste, inefficiencies and corruption.

Ms Byanyima also emphasized the need to focus on women and girls in Africa. “More needs to be done to rectify gender inequalities and end gender-based violence,” she said.

In eastern and southern Africa, girls and young women are two times more likely to acquire HIV than their male counterparts. In Uganda, overall HIV prevalence stands at 5.7% and 34% of new infections are among young people aged 15–24 years.

She also noted that Uganda should not waiver in protecting the human rights of everyone, and should drop the current law on same-sex sexual relationships. She said that governments should not discriminate, saying that gay men and other men who have sex with men and sex workers should not be denied access to health care.

During a meeting with civil society, Ms Byanyima encouraged them to speak up, telling them “You are the voice of citizens and you should hold government and others accountable.”

How innovations in rapid testing and child-friendly medicines are saving lives in Uganda.

By Karin Schermbrucker and Adrian Brune — Originally published by UNICEF

Last year, nearly 450 infants acquired HIV every day – most of them during childbirth. These children are at extremely high risk of dying in the first two years of life. But so many of them are never diagnosed or treated.

Inadequate HIV testing and treatment for children is a widespread challenge. Although the 2019 global treatment rate for HIV-positive mothers stands at 82 per cent, the diagnosis and treatment of children with HIV is just 54 per cent in most regions.

This gap in coverage is often because diagnostic processes tend to be more complicated and cumbersome for children. Infants require a special type of testing for HIV (virological), which is not readily available in most low- and middle-income countries.

And although there are age-appropriate antiretroviral medicines for children, they can be hard to find in many areas largely due to a lack of investment in testing them. 

This delayed diagnosis and treatment doesn’t have to happen. UNICEF and Uganda’s Ministry of Health recently enacted HIV treatment reforms for children to great success. With the help of partners and innovative diagnostic tools, 553 facilities across the country were able to provide antiretroviral therapy for children – up from 501 in 2017.

Dr. Denis Nansera, a paediatrician, examines Kansiime Ruth, 25, and her daughters aged 1 and 4 years, at the Mbarara Regional Referral Hospital in Mbarara District, Western Region, Uganda on 20 August 2019. "A good number of mothers used to fall out of antenatal care. But with (medical advancements), we see a huge reduction in the time taken to diagnose a child, and time taken to get child on medication,” Dr. Nansera says. Photo: UNICEF/UNI211885/Schermbrucker

Kansiime's one-year-old daughter is weighed and measured at the Mbarara Regional Referral Hospital on 20 August 2019. UNICEF, in partnership with the Ministry of Health of Uganda and the Clinton Health Access Initiative has implemented Point of Care Early Infant Diagnostic (POC EID) testing. This rapid testing process uses devices that are easy to transport, operate and maintain, allowing more health centres to diagnose infants. With early diagnosis, infants can immediately start anti-retroviral therapy. Photo: UNICEF/UNI211886/Schermbrucker

Enoch Turyatemba, a laboratory technician at Mbarara Regional Referral Hospital, takes a blood sample from a baby for early infant diagnosis testing, which screens for HIV and determines results on the same day. "Before the Point of Care [POC] machines, we collected dry blood samples and had to send them away. The turn-around time was sometimes months,” Enoch says. “With a POC machine, HIV-positive children can start treatment the next day. “We are saving lives,” Enoch adds. Photo: UNICEF/UNI211916/Schermbrucker

Enoch Turyatemba tests a sample of blood with the POC machine. In addition to the rapid testing, the Ministry of Health has approved the use of oral pellets of pediatric HIV medicine, which can be mixed with food and/or breast milk to disguise the bitter taste of the medication. The pellets also do not require refrigeration – a huge advancement. Photo: UNICEF/UNI211884/Schermbrucker

Kenyonyozi Joseline holds her baby inside the POC clinic at the Mbarara Hospital. Adolescent girls are more vulnerable to HIV infection because their reproductive systems are not fully developed. Gender inequality and patriarchal norms in Uganda also make it difficult for girls and young women to negotiate safe sex, predisposing them to early pregnancies and HIV. Photo: UNICEF/UNI211905/Schermbrucker

Kenyonyozi carries her baby on her back outside the the POC clinic. Paediatric HIV services lag considerably behind those for adults and pregnant women. While 82 per cent of mothers living with HIV receive treatment, only 54 per cent of children living with HIV are accessing life-saving drugs. Just 59 per cent of babies born to mothers living with HIV are tested for HIV within the first two months of life. Photo: UNICEF/UNI211891/Schermbrucker

Kansiime and her daughters arrive at the Mbarara Hospital. The three family members all live with HIV and go to the clinic regularly to collect their medication. "When I go to hospital, I am surrounded by other women who have come for treatment. We are there for the same reason,” Kansiime says. “This has helped me overcome stigma and given me strength." Photo: UNICEF/UNI211907/Schermbrucker

Kansiime gives her one-year-old daughter her paediatric HIV medicine at home in western Uganda. Her daughter now takes the oral pellets instead of the bitter syrup she used to use, which has helped her viral load. "It is much easier to give her the pellets mixed into food so she doesn’t struggle with the taste,” Kansiime says. “My advice to other mothers: Give your children the medication they need so they can live longer and educate others." Photo: UNICEF/UNI211882/Schermbrucker

Kansiime's four-year-old daughter peeks her head outside the door to her house. She was born with HIV and needs to take medication on a daily basis. But she has survived past the critical period for young children and infants, making her survival into adolescence and beyond more likely. “I love singing – my favorite song is a song called Sconto,” she says. Photo: UNICEF/UNI211903/Schermbrucker

Kabiite Ajara, 32, helps her baby take her paediatric HIV medication in their home in Isongo, Uganda. They are both living with HIV. "I give my baby medication once a day,” she says. “Initially medicine used to make her weak and vomit. But currently she is ok with the drug – I crush the tablet and put it into water, which she takes easily." Photo: UNICEF/UNI211928/Schermbrucker

Kabiite plays with her daughter outside their home. Kabiite is HIV-positive, but regular medication keeps her strength – and spirits – high. "I love playing with my children – taking them to play in the banana plantation, cooking together,” Kabiite says. “[My daughter] loves playing football a lot! And she is good!” Photo: UNICEF/UNI211933/Schermbrucker

This World AIDS Day, UNICEF is calling on all governments and partners to urgently close the testing and treatment gap for children and adolescents living with HIV-AIDS; to establish supportive, stigma-free communities that provide opportunities for testing and care; and to enact improved policies and rights for people living with this survivable epidemic.

This story, by Duniya Aslam Khan in Imvepi refugee settlement, Uganda, is reproduced from UNHCR, a UNAIDS Cosponsor 

On a bright sunny day in northern Uganda’s Imvepi refugee settlement, Inga Viola and Rufas Taban sit comfortably under the shade of a jacaranda tree, leafing through an old register.

The pair are unrelated but share a unique bond – they were both diagnosed with HIV back in South Sudan, before civil war forced them to flee to Uganda in 2017.

“I was devastated when I found out,” says Inga, 32, who was diagnosed in 2014. “I felt like ending my life but I thought about my children and decided to live.”

Rufas, 49, nods solemnly, himself diagnosed in 2011.

Introduced to each other at Imvepi refugee settlement by their Ugandan nurse, Jedah Twebaze, they soon forged a friendship around their shared experiences – deep distress on finding out their status, leaving their homes behind and raising their families in exile.

They formed a support group, which they called the Friendship Serving Group, with Rufas, a former tax collector, as the secretary and Inga as the vice president. The group also doubles up as a savings cooperative and currently has 22 South Sudanese members, all HIV positive.

They contribute to the group’s kitty each month, sharing the accumulated savings at the end of the year. The group also helps spread HIV awareness in the community, while fighting the stigma associated with it.

“We use our meetings as an opportunity to talk about our wellbeing, check on members who are struggling with their status and provide counselling,” explains Inga.

She adds that they also educate each other on the importance of taking Antiretroviral therapy (ART) treatment – a life-saving course of medication that the conflict and the ensuing journey to safety disrupted, causing hers and Rufas’ health to deteriorate by the time they reached Uganda.

“I spent many days without taking medicine. Each new day without treatment meant getting closer to death,” she says.

Thanks to Uganda’s progressive refugee policy that has integrated refugees into the national HIV programme, refugees like Inga and Rufas are able to resume their treatment as soon as they arrive. They receive ART medication on a quarterly basis, free of charge.

The medications help suppress levels of HIV in the blood and slow damage resulting from the infection. It helps prevent progression from HIV to AIDS, thereby significantly extending life expectancy and reducing the risk of transmitting the virus to zero.

“I thought to be HIV positive meant dying soon but our kind nurse told us that with regular medication, we can live a very normal life,” says Inga, looking at nurse Jedah, who’s been nicknamed, ‘Dr. HIV’ by refugees for his advocacy and commitment to educate both refugees and Ugandans on HIV/AIDS.

Jedah works at UNHCR’s partner agency, Medical Teams International (MTI) and observes that the level of stigmatization among South Sudanese refugees has improved significantly.

“Educational sessions with the communities here have yielded positive results in fighting stigma,” he says.

According to UNAIDS statistics, by the end of 2018, an estimated 1.4 million Ugandans were living with HIV – 1.2 million were aware of their positive status and 72 per cent of them were on ART.  

Currently, over 17,000 refugees receive ART treatment across all the health facilities in Uganda’s refugee settlements where both refugees and nationals can access healthcare.

Earlier this year, Uganda launched a multi-year, Health Sector Integrated Refugee Response Plan, aimed at strengthening refugee healthcare through an integrated approach. Health services to refugees are currently aligned to the country’s national health policy and Health Sector Development Plan.

Such progressive policies and programmes that support both refugees and their host communities will be among the topics under discussion at the Global Refugee Forum, a high-level meeting 17-18 December in Geneva. States, the private sector and others are expected to announce high-impact contributions that will give refugees a chance to thrive alongside their hosts.

For Inga and Rufas, unrestricted access to treatment and a positive attitude towards HIV patients has not only made their life in the refugee settlement easier but it has also alleviated stigma.

“People here treat HIV patients just like anyone who has any other illness,” says Inga. 

Another key milestone is the decline in mother-to-child transmission rates. Eighty-nine per cent of pregnant women who visited health centres were tested for HIV to prevent transmission to the unborn child.

“It is through these interventions that Inga and Rufas’ children are all HIV negative,” explains nurse Jedah.

The strong advocacy role played by communities in fighting stigma and spreading awareness is recognized in the theme of this year's World AIDS Day on1 December,  which is ‘Communities make the difference.’

While Inga and Rufas do their part to make a difference, more needs to be done to ensure that the AIDS response at national and international level remains an essential one.

“Let us control HIV because no one should contract this disease,” Rufas says. “As we know, prevention is better than cure.”