When the family and neighbours of Salma Karim (not her real name) found out that she was living with HIV they chased her out of her home. With nowhere to go, she was forced to leave her two young children behind. This is not an uncommon story in Egypt. One in five people living with HIV report being forced to leave their homes by their landlords, family or neighbours.

High levels of stigma and discrimination are one of the key factors driving new HIV infections in the country, which doubled between 2010 and 2016. Women and adolescent girls are often the most vulnerable. Societal norms, gender inequality, economic dependence, legal discrimination and harmful practices affect them disproportionately, making them more vulnerable to HIV and facing greater levels of stigma and discrimination in the event of HIV infection.

In 2016, UNAIDS in partnership with the Egyptian Ministry of Health and Population joined efforts towards a gender-transformative response to the HIV epidemic. With funding from the Dutch government, a pilot project called Enhancing Sexual and Reproductive Health of Women Living with and Affected by HIV was launched. Three years later, the pilot has reached double its intended beneficiaries with stigma-free quality sexual and reproductive health services.

“I lost my first child as I didn’t know I had HIV,” explains Nour Tarek (not her real name). It was in one of the pilot project sites in Giza that she received the support to realize her reproductive rights free from discrimination. “I followed up with the doctor in the hospital and I became pregnant again.”

Thanks to the antiretroviral medicine she received while pregnant, her baby Mona (not her real name) was born HIV-negative. “I still have to test again until she is older to make sure she is fine,” explains Ms Tarek.  

Having proved its success, the pilot project is now being scaled up to a third of the country’s governorates. The aim is to deliver high-quality sexual and reproductive health and HIV services for 1300 women living with HIV and 3000 women at higher risk of acquiring HIV. Its focus on building the capacity of health-care providers and civil society organizations will be key to avoiding future stigma and discrimination, which is reported to lead one in four people living with HIV in Egypt not to disclose their HIV status when seeking care.

During his visit to Cairo on 9 April, the Executive Director of UNAIDS, Michel Sidibé, and the Ambassador of the Netherlands to Egypt, Laurens Westhoff, discussed the expansion of the project. Implemented through a new three-year Dutch grant, the scaled-up services will complement national efforts to achieve Egypt’s ambitious new National AIDS Strategy 2018–2022 and the Sustainable Development Goals.

Malawi has become the latest country to launch a health situation room, a software platform designed to help the government make informed decisions about policies and programmes related to health, including HIV.

The innovative tool bolsters national information systems through real-time visualization of information from multiple data sets. It will enable leaders and programme managers to improve health programmes to achieve the 90–90–90 targets, whereby 90% of people living with HIV know their HIV status, 90% of people who know their HIV-positive status are accessing treatment and 90% of people on treatment have suppressed viral loads by 2020.

Malawi is making good progress in its response to HIV. In 2017, 90% of people living with HIV in the country knew their status, 71% of people living with HIV had access to treatment and 61% of people living with HIV had a suppressed viral load. Around 1 million people are living with HIV in Malawi, with new HIV infections in 2017 down by 40% since 2010. However, HIV infections among young women and adolescent girls aged 15–24 years remain high and account for more than one in four new infections per year.

In his speech at the launch of the health situation room in the capital, Lilongwe, the President of Malawi, Arthur Peter Mutharika, said the tool was an important step forward.

“The health situation room is a demonstration of my government’s commitment towards accountability and transparency,” said Mr Mutharika. “My desire is that the health situation room will show us where to focus to improve even further in our quest for a healthier Malawi.”

The Executive Director of UNAIDS, Michel Sidibé, said the launch would strengthen the country’s health sector.

“The health situation room is an important innovation as it shares real-time data to improve the understanding of the country’s HIV epidemic and other health challenges,” said Mr Sidibé at the launch. “It will guide Malawi’s response and help officials to close the gaps, ensuring that no one is left behind as the country gets on track to end the AIDS epidemic by 2030.”

While the intention of age of consent laws for medical services is often to protect children, in practice such laws do the opposite, by discouraging adolescents from accessing the services they need to stay healthy.

Age of consent laws for medical services require people aged younger than 18 years to obtain permission from a parent or guardian before accessing sexual and reproductive health services, HIV testing and treatment, pre-exposure prophylaxis and other health services. They particularly affect adolescent girls, whose sexuality tends to be stigmatized and who bear the physical and social burdens of unwanted pregnancies.

In 2017, 78 of 110 reporting countries stated that they required parental consent for a child under 18 years to access HIV testing, and 61 of 109 reporting countries required parental consent for HIV treatment. In addition, 68 of 108 reporting countries required parental consent to access sexual and reproductive health services.

Comprehensive sexuality education plays a central role in preparing adolescents and young people for a safe, productive and fulfilling life, and it is an important component of an HIV prevention package for young people. It provides opportunities to learn and acquire complete, accurate, evidence-informed and age-appropriate knowledge on sexuality and sexual and reproductive health issues.

Comprehensive sexuality education―defined as a curriculum-based process of teaching and learning about the cognitive, emotional, physical and social aspects of sexuality―have been shown to contribute to delayed initiation of sexual intercourse, decreased frequency of sexual intercourse, decreased number of sexual partners, reduced risk taking, increased use of condoms and increased use of contraception among young people.

Despite the importance of comprehensive sexuality education, however, access to it is far from universal.

The HIV epidemic continues to have a profound humanitarian and public health impact in western and central Africa, a region that risks being left behind in the global response to ending the AIDS epidemic. In July 2017, the African Union endorsed a regional catch-up plan for western and central Africa that seeks to rapidly accelerate access to HIV treatment and close the gap between African regions. National catch-up plans have been established in 18 countries in western and central Africa, including in Liberia.

It is estimated that in 2017, 40 000 people were living with HIV in Liberia, including around 3000 children aged 0–14 years. Fewer than one in three adults aged 15–49 years who are living with HIV have access to medicines that would keep them well and stop them passing on the virus to other people. For children, the situation is even more challenging, with just 18% on treatment.

However, there are encouraging signs that Liberia is scaling up its response to the HIV epidemic and adopting best practice programmes and policies to ensure the delivery and take-up of HIV testing, treatment and prevention services. Under the leadership of the Ministry of Health and the National AIDS Commission of Liberia, a Fast-Track plan for 2019–2020 has been developed that identifies high-impact programmes to accelerate the response, the urgent need for adjustments to existing programmes and barriers that must be removed in order to ensure better service delivery. It also recognizes that prevention measures must be reinforced and that stigma and discrimination associated with the virus must be reduced.

The Liberia catch-up plan seeks to triple the country’s test and treat figures, whereby people who test positive for HIV are immediately referred for treatment. The catch-up plan is guided by a location–population approach, with a service delivery bias towards the three counties with the highest unmet need for HIV testing, treatment and care services, urban areas and some other locations. Services are oriented towards adults aged 15–49 years, especially to pregnant women and to groups at higher risk, such as gay men and other men who have sex with men, sex workers, people who inject drugs, prisoners and mine workers. Infants exposed to the virus during pregnancy and breastfeeding are also a priority.

The plan also aims to tackle the low take-up of services by men.   

“We are designing interventions that will encourage more men to test and know their status. Of those tested so far, 80% are women,” said the National AIDS Commission of Liberia Chair, Theodosia Kolle. “Stigma remains a major issue in Liberia.”

UNAIDS played a significant role in helping to draft the catch-up plan, mobilizing stakeholder involvement and ensuring that people living with HIV, civil society and members of key populations were included in order to shape its design. Around 70 people took part in a special two-day workshop in March to craft the necessary political and programmatic measures to improve service delivery, enhance community mobilization, increase funding and enable a more efficient use of existing resources and an improved monitoring and evaluation system.

The workshop was also an opportunity to validate the Global AIDS Monitoring (GAM) report for 2019 for Liberia. GAM is the world’s most extensive data collection on HIV epidemiology, programme coverage and finance and publishes the most authoritative and up-to-date information on the HIV epidemic—vital for an effective AIDS response.

“With teamwork we can reach the 2020 Fast-Track Targets as long as we prioritize and implement high-impact programmes,” said Miriam Chipimo, UNAIDS Country Director for Liberia.

The 90–90–90 targets included in the Fast-Track approach are that, by 2020, 90% of all people living with HIV will know their status, 90% of all people living with HIV will have access to antiretroviral therapy and 90% of all people on antiretroviral therapy will have viral suppression.

Discussions about sex and HIV in Indonesia remain highly taboo, while the limited information that exists is often unclear, not easy to digest or contradictory. That’s why many young people are turning towards new technology platforms to seek answers to questions that affect their health and well-being. 

In an attempt to improve the quality of information provided to young people, the UNAIDS Country Office in Indonesia has developed Tanya Marlo, or Ask Marlo, a chatbot powered by artificial intelligence and designed to be the go-to source for all things HIV-related.

Marlo is a cute character who provides basic information about HIV through user-friendly content such as infographics, quizzes and FAQs (frequently asked questions). In just a few taps, Ask Marlo users can also book HIV testing appointments at health centres across Jakarta, Indonesia. Young people looking for a more in-depth chat are connected to real counsellors, who are on standby to talk, provide guidance and make referrals to specialized services.

The counsellors receive many questions on how to access HIV services and HIV treatment.

“Many people, particularly young people, in Jakarta still do not know basic information about HIV. I hope that as a counsellor on Marlo, I can change that,” one of the counsellors said.

The Ask Marlo chatbot is integrated into the LINE chat messaging application. Users looking to chat to Marlo can simply add @tanyamarlo on LINE and begin chatting. Indonesia is one of LINE’s top markets, with around 90 million users. Around 80% of its users are young people, many of whom use LINE Today to get news and information and to shop.

Since launching on 1 December 2018, Ask Marlo has increased the number of its users, reaching almost 3000 followers at the end of March. Reviews of Ask Marlo bear witness to how important and necessary the service is for young people.  

Upon seeing Ask Marlo for the first time, a psychology graduate from the University of Indonesia said, “It is so youth-friendly! My friends and I use LINE a lot, so this is the perfect platform for Ask Marlo. I am surprised that a chatbot can be used to teach about things as complex as HIV.”

A university student at the Atma Jaya University likes the anonymity provided by the application. “With Ask Marlo, we don’t have to be ashamed to ask anything related to HIV.”

University students, young professionals, communities, civil society activists and the Ministry of Health have endorsed Ask Marlo. Besides students and young professionals, several social media influencers and YouTube personalities have also given their stamp of approval. Their endorsement of Ask Marlo has helped to promote the chatbot to wider audiences. The idea is to eventually expand to offer testing in other major cities across Indonesia.

Thirty minutes before the workshop had even started, the meeting room was full. A murmur of voices echoed around the room as the participants took a last look at the data that would be used in the next round of HIV estimate modelling. It was important to get this right—the results of the workshop would eventually influence the allocation of billions of United States dollars-worth of investments in the AIDS response.

More than 100 people from 11 countries in eastern and southern Africa, supported by nine organizations, had come together in Johannesburg, South Africa, to analyse the trends and burden of the HIV epidemic in their countries. The UNAIDS workshop was one of 11 held worldwide between 28 January and 30 March 2019 during which 140 country teams—including epidemiologists, HIV programme managers and monitoring and evaluation experts—learned about the latest updates to the software used to estimate the number of people living with HIV, new HIV infections and AIDS-related deaths.

Over the course of the workshops, the teams produced new estimates on the HIV epidemics in their countries from 1970 to 2018, refining estimates made in past years. Country programmes and donor responses are based on the latest and most accurate data. Such data are used to set targets, identify hotspots, revise national programmes and decide the course of the AIDS response.

Before they arrive at the workshop, the country teams collect programme and surveillance data from their health information systems. At the workshop, those data are entered into Spectrum—a sophisticated UNAIDS-supported computer software package used to compile and analyse data on the HIV epidemic—to produce country HIV estimates.

Those countries that have good facility-level data use that information, together with data on road networks, population densities and other variables, to calculate the number of people living with HIV by district—information that is crucially important for a location–population approach to the AIDS response. Those district estimates are further broken down into different age groups and by sex.

Countries that receive funds from the United States of America import their estimates into a spreadsheet known as the Data Pack, which is used in the process to determine the level of financial support a country will receive.

One country whose AIDS response is supported by the United States is Lesotho. Assigned to support the country team members during the Johannesburg meeting was John Stover, the lead developer of Spectrum, who has an exceptional ability to explain complex concepts and find rigorous solutions even where few data exist.

The Lesotho country team members were eager to develop a comprehensive plan as part of Lesotho’s bid for additional funding, but they were concerned about the new estimates of child HIV infections, which were higher than their previous estimates. Mr Stover worked with the team over the course of the week to walk them through each of the assumptions made in the models, explaining how the model matched the data available from the country and the recent Lesotho Population-Based HIV Impact Assessment (LEPHIA) results and what caused the change in the estimates. A new tool has been included in Spectrum that shows where the new child infections came from and how to strengthen the prevention of mother-to-child HIV transmission programme to reduce the number of new child HIV infections in the future. When they left the workshop, the team had the capacity to explain the new estimates to policy-makers in Lesotho and beyond and to propose how to lower those new HIV infections in the future.

Additional workshops that trained more than 500 people on the Spectrum software have been held around the world, including in: Bangkok, Thailand; Panama City, Panama; Marrakesh, Morocco; Dakar, Senegal; Stockholm, Sweden; and Port of Spain, Trinidad and Tobago. The workshops were supported by facilitators from 14 organizations.

The estimates produced in the workshops will be reviewed by staff at UNAIDS over the coming month for quality assurance, before being signed off by ministers of health and published by UNAIDS at aidsinfo.unaids.org and in a UNAIDS report in mid-2019.

Cities play a critical role in both the HIV epidemic and the response. More than half of the world’s population currently live in cities, and in most countries, cities account for a large and growing proportion of the national HIV burden. City dynamics and networks can contribute to an increased risk of HIV transmission, but cities offer advantages and important opportunities for programming, effective action and innovations to end AIDS.

Of the 10 priority cities included in the first year of the joint UNAIDS and International Association of Providers of AIDS Care Fast-Track Cities Project, up to 25% of the national HIV burden rests in just one city. A quarter of all people living with HIV in Rwanda live in Kigali, and while the population of Jakarta represents only 4% of the total population of Indonesia, the city accounts for 17% of the national HIV burden.

The Fast-Track Cities Project is providing essential strategic technical support to selected high-burden cities in order to assist them to reach the 90–90–90 targets and end AIDS in cities by 2030.

“The fact that something is hard to evaluate doesn’t make it impossible,” said Anna Downie, who leads on strategic information at Frontline AIDS. Reflecting on the challenge of evaluating advocacy, coalition-building, generating new partnerships and increasing the capacity of communities, she added, “To be successful, it is essential to allow space for innovation, to hear from communities about what is important to them and involve them from the outset so that you are looking for the same results and the evaluation is truly useful.”

Ms Downie was one of a number of experts who gathered in UNAIDS headquarters on 29 March in Geneva, Switzerland, for UNAIDS’ first consultation on evaluation. With the aim of informing the new UNAIDS evaluation policy, to be presented to the UNAIDS Programme Coordinating Board (PCB) meeting in June, the participants shared lessons they have learned while working on evaluation.

“Generating evaluations that are independent, credible and useful is the foundation of our work” said Susanne Frueh, the Chair of the United Nations Evaluation Group and Chair of the consultation.

The central role of countries in supporting a strong and independent evaluation function at UNAIDS was highlighted. The need for dedicated funding for evaluation, for the evaluation function to be independent and for transparency in the appointment of the head of the evaluation function were highlighted. The credibility and expertise of the staff of the office of evaluation, the establishment of an independent advisory committee and the need to protect the office from becoming politicized were also noted.

Michel Sidibé, UNAIDS Executive Director, highlighted the importance of the evaluation function. “We will not be able to transform or sustain our gains in the AIDS response if we don’t have clear learning from what we are doing. We will not be able to quicken the pace of action and help countries to scale up if we are not able to share our work and lessons learned,” he said.

The participants agreed that it is essential not only to ensure a strong gender and equity element in evaluations but also to measure what works and identify results in the areas of gender and human rights, which are cornerstones of the AIDS response. Triangulating data on human rights with civil society is a good way of ensuring that the evaluation provides a full picture. The importance of assessing the support provided by UNAIDS when major donors transition from countries was also highlighted.

In the medium to long term, the participants highlighted the need to build the capacity of young evaluators and to consider working with the growing number of evaluation companies from the global South.

The UNAIDS policy on evaluation is to receive a final round of comments from stakeholders soon. It will then undergo a peer review by the United Nations Evaluation Group before being presented to the UNAIDS PCB for endorsement. 

After six months of data collection and three months of data analysis, the President of Nigeria, Muhammadu Buhari, announced the results of the Nigeria HIV/AIDS Indicator and Impact Survey (NAIIS) in March 2019. Costing approximately US$ 100 million and covering more than 200 000 people, 185 survey teams collected data for the NAIIS, the largest HIV-specific survey in the history of the global response to the epidemic.

In Nigeria, three types of survey have been conducted by the Federal Ministry of Health HIV/AIDS Division to determine HIV prevalence and to monitor the trends of the HIV epidemic in the country:

• The HIV Sentinel Survey (HSS), which is conducted typically every two to three years among women attending antenatal clinics, which determines HIV prevalence among pregnant women.
• The National Reproductive Health Survey (NARHS), which is conducted every five years among the general population.
• The Integrated Biological and Behavioural Surveillance Survey (IBBSS), which is mostly used to monitor prevalence and behavioural trends among key populations.

The last HSS and IBBSS took place in 2014, while the last NARHS took place in 2012. These data sources have served as the main survey data sources for the AIDS response in the country.

Between 2012 and 2014, significant progress was made in the AIDS response in Nigeria. The number of antiretroviral therapy sites doubled, prevention of mother-to-child transmission sites increased eightfold and HIV counselling and testing sites increased fourfold. According to government data, 6.7 million adults were counselled and tested for HIV in 2014, a 65% increase from the previous year. HIV testing among pregnant women also doubled in 2014 compared to 2013. Similarly, the number of people living with HIV on antiretroviral therapy increased significantly.

However, despite this progress, there was no commensurate improvement in the statistics on the coverage of antiretroviral therapy among people living with HIV. National achievements in the AIDS response were poor compared to the targets, and programme implementers reported difficulties in identifying people living with HIV in need of services. It was therefore suggested that the HIV burden was not as high as was estimated using the available HIV prevalence data.

Former UNAIDS Country Director Dr Bilali Camara was a longstanding advocate for an expansion of the surveillance of the country’s epidemic.

“Working as UNAIDS Country Director in Nigeria, I realized early on that we did not have the full picture of the country’s AIDS epidemic,” said Dr Camara. “I was pushing for surveillance to be expanded for a long time―I am very happy that with this new survey we now have a better understanding of the AIDS epidemic in Nigeria and that it will allow us to better respond to the areas and people in most need.” 

Dr Camara’s persistence indeed paid off.

In July 2015, the National Agency for the Control of AIDS (NACA), under the leadership of its then Director-General, Professor John Idoko, decided that it was imperative to better understand Nigeria’s HIV epidemic. The NACA set up a National Stakeholder Committee, comprising the head of the National AIDS and STI Control Programme, the UNAIDS Country Director, the World Health Organization (WHO) representative, the United States President’s Emergency Plan for AIDS Relief (PEPFAR) Coordinator, civil society and others, which decided to conduct a triangulation of data from various sources.

“The need for the survey was first initiated under my leadership, but we had overwhelming support from Dr Camara. UNAIDS headquarters was even willing to send its Strategic Information Director to Nigeria at the time,” said Professor Idoko.

Many countries have shifted to a location–population approach, which helps to ensure that HIV services reach the people and geographic areas with the greatest need. Location–population approaches require granular-level data, which were not typically available in Nigeria. In 2016, the UNAIDS Nigeria Strategic Information Team, led by Dr Gatien Ekanmian, was tasked to develop an evidence-informed methodology to estimate the HIV burden at the local level. During this process, a closer analysis of the results from the various surveys highlighted a series of issues with the HSS surveys:

• The sentinel sites were too limited in number to ensure nationally representative geographic coverage based on the demographics of the country.
• Urban sites were oversampled.
• Rural sites were usually under-sampled.
• There were often more urban sites than rural sites in many states, thus the HSS results reflect more the urban HIV epidemic than the rural epidemic among pregnant women.

The conclusion of the UNAIDS Nigeria epidemiological analysis was that the HSS and NARHS were no longer giving sufficiently precise epidemiological information. It was recommended that a comprehensive review of the HIV surveys being conducted in Nigeria be carried out in order to address the shortcomings in the existing survey approaches and methodology. 

Thereafter, the UNAIDS country office met with various stakeholders, including the Development Partners’ Group on HIV, and presented these observations and recommendations, effectively utilizing the Development Partners’ Group on HIV to galvanize support from PEPFAR and the Global Fund to Fight AIDS, Tuberculosis and Malaria (Global Fund) in particular.

In June 2016, the Director-General of the NACA raised an objection to the latest estimate of 3.5 million Nigerians living with HIV, believing that the figure was an overestimation. He had the opportunity to discuss his concerns with UNAIDS country directors, Dr Erasmus Morah and Dr Alti Zwandor at the International AIDS Conference in Durban, South Africa, in 2016. In July 2016, after advocacy from the UNAIDS country office, the new Minister for Health, Professor Isaac Adewole, and the new Director-General of the NACA, Dr Sani Aliyu, agreed on the need for an epidemiologically robust population-based HIV survey in Nigeria. They approved the recommendations for a population-based survey and committed to mobilize resources for it.

“When I resumed as Director-General of the National Agency for the Control of AIDS, a recurring issue that came up at every introductory meeting with partners was the difficulty in finding new cases. It was obvious that there was a problem with case-finding. Was this because we were looking in the wrong places? I had doubts on the quality data we had … and we can’t achieve epidemic control if we don’t even know where we are. Hence, the number one priority of my administration was born―establishing the true prevalence of HIV in Nigeria by employing the best scientific and technical survey tools available in the shortest possible time,” said Dr Aliyu.

In November 2016, a review and triangulation of HIV data in Nigeria was commissioned by the NACA, in collaboration with UNAIDS, the findings of which gave further support for a national survey to develop more precise estimates of HIV prevalence. Firm support for the survey came from the Government of the United States of America (the Centers for Disease Control and Prevention, PEPFAR, USAID and the Department of Defense) and the Global Fund, which committed funding to the NAISS.

“It was easy to see that getting the data situation in Nigeria right was not only the right thing to do but also the dream of so many people. Fortunately, Nigeria had great partners to help turn this dream into reality. Programming and accounting for HIV results in the country will never be the same,” said Dr Morah, the current UNAIDS Country Director for Nigeria.

The United Nations system’s contributions in the NAIIS Technical Committee were anchored by UNAIDS, WHO and the United Nations Children’s Fund. Before the results of the survey were announced, Peter Ghys, UNAIDS Director of the Strategic Information Department, led a multi-group technical mission to Nigeria. The team gave advice on the use of the survey results, on the trends and the geographic locations of the epidemic, at the national and subnational levels. They also gave technical guidance to national partners on data management and governance, including on a strategy for country ownership and leadership of the survey results and support on how to communicate the changes in the epidemiological profile of HIV in the country.

“The road to NAIIS is a wonderful and brilliant story to tell, because it actually tells the story of the HIV response in Nigeria,” said Professor Adewole.

This feature is adapted from an article written by Erasmus U. Morah, Gatien K. Ekanmian and Doris, A.Ogbang