Democratic Republic of the Congo

GENEVA/KINSHASA, 2 November 2022—UNAIDS is alarmed that fighting between government forces and rebels in the east of the Democratic Republic of Congo is causing serious disruption and harm to treatment, prevention and care services for people living with and affected by HIV.

In the health zones of Rutshuru and Rwanguba where some of the heaviest fighting has been reported, the AIDS Control Programme (PNLS) in North Kivu has registered 1155 people living with HIV currently on treatment including 102 pregnant women and 46 children. As the violence has escalated, large numbers of people have fled these areas in the past few days, most of them south towards Goma.

“I am extremely worried about the health and well-being of people living with and affected by HIV both in the areas affected by the fighting and in communities hosting those who have been displaced. People may have had to leave their homes at a moment’s notice without time to pick up essential medicines,” said UNAIDS country director, Susan Kasedde. “I am especially concerned about the situation of pregnant and breastfeeding mothers living with HIV and their babies. The interruption to treatment for these mothers will have catastrophic implications for their infants. It is a race against time and we must do everything possible to find these women urgently and link them to care.”

UNAIDS is working closely with national HIV programme managers, civil society groups, community organizations and all partners to support an emergency response to the current situation.

The following activities are being conducted as a priority:

• Verifying the numbers of people living with HIV currently on treatment to inform needs and planning going forward in the affected communities of Rutshuru and Rwanguba and in the host communities
• Conducting an assessment with humanitarian partners to enable the integration of HIV-related services into the joint response. This includes working with partner United Nations agencies including UNOCHA, UNICEF, WFP, UNFPA and UNHCR to gather information from civil society organizations to understand needs and capacities both in conflict-affected areas and communities hosting displaced people
• Rebuilding community support networks by contacting focal points of civil society organizations, community organizations such as mentor mothers, and service providers to establish a network with the capacity to help track and trace people living with HIV and to support the continuity of HIV services for them, including psycho-social services for victims of gender-based violence, and nutritional support to enable HIV treatment to be taken  
• Supporting community-level efforts to ensure more effective messaging for people living with HIV and related to the protection of the rights of people living with HIV. UNAIDS is also conducting ongoing advocacy to strengthen the integration of HIV needs into the emergency response.

UNAIDS fully supports calls for the immediate cessation of hostilities made by the United Nations Secretary General, Antonio Guterres, and by the African Union.

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.

"We are here, we are not giving up". These are the encouraging words of Thérèse Omari, an activist who has been involved in the fight against AIDS for more than 20 years within the Femme Plus organisation, of which she is the co-founder and National Director in the Democratic Republic of Congo.

Femme Plus, true to its motto "Positive Life", works to improve the quality of life of people living with HIV. "The objective is for our beneficiaries to live in harmony with themselves, with their environment and with their beliefs," explains Ms Omari. 

To this end, the organisation provides psychosocial support to people living with or affected by HIV through counselling, care and support services. Femme Plus also carries out numerous activities in communities to free people living with HIV from the burden of stigma. "There is still a lot to be done to change behaviours towards people living with HIV," says Ms Omari. In the Democratic Republic of Congo, HIV-related stigma is still very present, especially in community settings. "Many people living with HIV say they no longer participate in family gatherings and other events fearing discrimination. It is therefore essential that people who come to Femme Plus feel that they are considered normal people with rights and obligations," she explains. In order to raise awareness, the organisation runs workshops to provide communities with the knowledge to better support people living with HIV, without isolating them or treating them differently.

Ms Omari also deplores the persistence of stigma and discrimination in health care settings despite the numerous HIV-related trainings for health care workers. In particular, she receives testimonies from pregnant women who have tested positive for HIV in one facility and wish to give birth in another, fearing of being stigmatised and treated differently. This is problematic as it can be detrimental to the provision of appropriate care for the mother and baby.

Ending discrimination and ensuring that the rights of people living with HIV are protected is therefore one of Femmes Plus' priorities to help them assert themselves and make the right choices about their health. "We encourage people living with HIV to empower themselves, to speak up about their condition, for their own well-being," says Ms Omari. 

Ms Omari also raises other obstacles to the AIDS response. The lack of access to prevention and treatment, and the low rate of people with an undetectable viral load, are among the shortcomings of the fight against HIV in the Democratic Republic of Congo. "Not everyone has access to testing. There are still people with HIV who live in anonymity," warns Ms Omari.

To overcome this gap, Femme Plus works with community leaders to teach them how to stay healthy with HIV. Among other activities, it also engages with pregnant and breastfeeding women, providing them with the knowledge to protect their babies and thereby stop vertical transmission.

"As long as there are people who do not know their HIV status, who do not have access to treatment and who have not reached an undetectable viral load, the fight of Femme Plus will remain meaningful," insists Ms Omari.

She concludes by pointing out that the fight against AIDS in the Democratic Republic of Congo is taking place in a context where resources are limited. "The local population must be involved in psychosocial care and prevention activities to make HIV an electoral issue," she explains. While waiting for more substantial funding from the State and better traceability of funds, community-led services have a crucial role to play with people living with HIV. They are at the heart of the fight against AIDS, advocating for access to prevention and life-saving care, calling for respect for human rights and addressing the specific needs of their beneficiaries. Their support is therefore pivotal in meeting the challenges of the HIV response and ending AIDS by 2030.

UCOP+, the Congolese Union of Organizations of People Living with HIV, through funding and technical support from UNAIDS, set up the Observatory project, designed to collect and analyse data to guide action to improve the quality of HIV services.

“The Observatory, which looks at access to and the quality of HIV and HIV/tuberculosis services, is a community-based initiative. Its main objective is to help the government and civil society define and implement national policies in accordance with international norms and standards,” said Natalie Marini, Human Rights and Gender Adviser at the UNAIDS Country Office for the Democratic Republic of the Congo.

The Observatory was set up following repeated stock-outs of HIV and tuberculosis medicine, requests for payment for services that are supposed to be free, the persistence of stigma and discrimination and human rights violations and the long distances that people have to travel to access health care. Three areas are monitored monthly—the availability of services, the quality of care, including the availability of medicine, and accessibility of care.

The initiative shows the importance of collaboration between civil society, health services and donors in the HIV response and has led to an improvement in HIV/tuberculosis services in health facilities. “The Observatory is an indispensable tool that gives us the first clues about supply,” said Aimé Mboyo, director for the National AIDS Control Programme. “It helps us enormously.” The data from the Observatory complements the data of the National Health Information System (SNIS).

Since its launch in 2013, the Observatory has contributed to reducing the cost of access to health care in some health facilities and has anticipated stock-outs and helped to reduce their frequency. The Observatory has also reduced self-stigma by valuing the people who use the services and putting them at the heart of the system. “Before, I didn’t have anything to say about the care offered to me,” said Joséphine Ntumba (not her real name), who is living with HIV. “Now I can give my opinion and make a difference.”

The concept of a “community observatory” has been shown to be a success and is now integrated in the concept note for the Democratic Republic of the Congo of the Global Fund to Fight AIDS, Tuberculosis and Malaria. However, there is still a long way to go—only three out of 23 provincial health departments are covered. 

The Democratic Republic of the Congo has been plagued by political instability since the 1990s and has seen widespread attacks against civilians, violence between ethnic factions, rape and other forms of sexual violence, and murder. Sexual violence against adolescent girls and young women is common.

Violence against women and girls continues to be a global pandemic that affects one in three women in their life. Violence against women is a major factor for contracting HIV—in areas with a high HIV burden, such as sub-Saharan Africa, women subjected to intimate partner violence are 50% more likely to be living with HIV. And men who are perpetrators of violence against women tend to be at a higher risk of HIV themselves and to use condoms less frequently, thus increasing the risk of HIV transmission.

According to the latest Demographic and Health Survey of the Democratic Republic of the Congo, HIV prevalence is three times higher among women aged 15–49 years (1.1%) than among men of the same age (0.4%) and twice as high among young women aged 15–24 years (0.46%) than among young men of the same age (0.22%).

RENADEF (Réseau National des ONG pour le Développement de la Femme), a platform of approximately 350 non-state groups working for women, is tackling this issue front and centre. As a subrecipient of a grant from the Global Fund to Fight AIDS, Tuberculosis and Malaria, RENADEF is running a project to strengthen awareness around sexual and reproductive health and rights, including HIV, to facilitate access to support services and to encourage behaviour change among adolescent girls and young women in 16 HIV high-burden provincial divisions.

In collaboration with health-care providers, almost 200 peer educators and mentors have been trained on sexual and reproductive health and more than 600 educational talks in different settings, including schools and communities, have been facilitated, reaching more than 6500 people, including 2500 girls.

“I was not informed about sexually transmitted infections and their consequences on my life, but I had the chance to participate in an awareness session organized by the peer educators and mentors in my neighbourhood; at the end of the session, I approached one of the sensitizers to explain my problem to her. She gave me advice and referred me to a health training, where I was taken care of for free and I feel good now,” said Nathalie Nyembwe (not her real name), who attended one of the educational talks.

The project also supports clinics giving psychosocial, legal and judicial support to survivors of sexual violence. Since 2018, clinics have been held that have provided psychological support to almost 5500 people and legal/judicial support to more than 3500 survivors of sexual violence.

The community sensitization, capacity-building of legal clinics and support for survivors of sexual violence have contributed to an increase in the reporting of rape.

“It’s particularly important, particularly as we reflect on our experience with COVID-19, that we acknowledge the important role that women have played to protect others from violence, to ensure continued support to vulnerable families and to ensure access to food and medicine. Women have provided invaluable support to keep people connected to neighbours, services and information, all the while ensuring that homes remain a safe space for children and families to continue to learn and grow socially,” said Susan Kasedde, the UNAIDS Country Director for the Democratic Republic of the Congo.

As a champion country of the Global Partnership for Action to Eliminate all Forms of HIV-Related Discrimination, the Democratic Republic of the Congo has a unique opportunity to strengthen its implementation of coordinated, comprehensive and scaled-up action involving a range of stakeholders and to build synergies on action on gender equality across sectors. 

On World AIDS Day, the UNAIDS Executive Director visited an HIV community village and a children’s hospital

Kinshasa, 2 December 2020—UNAIDS Executive Director Winnie Byanyima visited an HIV community village in Kinshasa as part of the World AIDS Day ceremonies in the capital of the Democratic Republic of the Congo. She commended the country on its vast experience in responding to pandemics such as Ebola after the country announced the end of the latest Ebola outbreak on 18 November.

“I thank the Congolese government, our friends from civil society and partners who together have enabled the country to respond to its many challenges, particularly HIV, Ebola and now COVID-19,” said Ms Byanyima.

Ms Byanyima stressed that more people in the country need life-saving HIV treatment and that more needs to be done to support women in particular. “Despite considerable progress, only 57% of people living with HIV are on antiretroviral therapy,” Ms Byanyima said. “Coverage of antiretroviral therapy is higher among men (72%) than among women (51%), a real sign of gender inequality.” She added that if women do not feel safe to disclose their HIV status or feel that they will be supported or accepted if they are living with HIV, they will not enrol onto HIV treatment.

Out of the 520 000 people living with HIV in the Democratic Republic of the Congo, more than 64% are women. There are 68 000 children under the age of 14 years who are living with HIV in the country, of whom only 25% are on treatment, which is why Ms Byanyima called on the country to accelerate paediatric care, including HIV services.

At the Kalembelembe Children’s Hospital she spoke to staff and adolescents who have grown up accessing care and support at its paediatric centre. The adolescents asked the Executive Director to continue to advocate for funding to maintain peer support groups for adolescents living with HIV, the elimination of user fees, the inclusion of all adolescents living with HIV in education and the elimination of legal barriers requiring parental consent for HIV testing for adolescents.

HIV in the Democratic Republic of the Congo, like in the rest of sub-Saharan Africa, particularly affects young women. Ms Byanyima reiterated that to end AIDS, the focus must be put on women and girls. “Every week, 4500 young women in sub-Saharan Africa are infected with HIV,” she said. “This is unacceptable, we need to make a radical difference in the response to HIV.”

Upon her arrival in Kinshasa, Ms Byanyima met with the Minister of Health, Eteni Longondo. She congratulated him on his leadership in responding to COVID-19 and shared her concerns about keeping HIV at the top of the agenda, despite the multitude of pressures of the three colliding pandemics of Ebola, HIV and COVID-19. 

AIDS-related deaths in the Democratic Republic of the Congo have dropped by 61% in the past 10 years, from 37 000 in 2010 to 15 000 in 2019.  HIV prevalence hovers around 1% among adults, but 23 000 people became newly infected with HIV last year. 

Bold ambitious targets

UNAIDS’ new report, Prevailing against pandemics by putting people at the centre, calls on countries to make far greater investments in global pandemic responses and to adopt a new set of bold, ambitious but achievable HIV targets. If those targets are met, the world will be back on track to ending AIDS as a public health threat by 2030.

The global AIDS response was off track before the COVID-19 pandemic hit, but the rapid spread of the coronavirus has created additional setbacks. Modelling of the pandemic’s long-term impact on the HIV response shows that there could be an estimated 123 000 to 293 000 additional new HIV infections and 69 000 to 148 000 additional AIDS-related deaths between 2020 and 2022.

“The collective failure to invest sufficiently in comprehensive, rights-based, people-centred HIV responses has come at a terrible price,” said Winnie Byanyima, Executive Director of UNAIDS. “Implementing just the most politically palatable programmes will not turn the tide against COVID-19 or end AIDS. To get the global response back on track will require putting people first and tackling the inequalities on which epidemics thrive.”

Getting back on track

Although some countries in sub-Saharan Africa, such as Botswana and Eswatini, have done remarkably well and have achieved or even exceeded the HIV targets set for 2020, many more countries are falling way behind. The high-performing countries have created a path for others to follow. UNAIDS has worked with its partners to distil those lessons into a set of proposed targets for 2025 that take a people-centred approach.

The targets focus on a high coverage of HIV and reproductive and sexual health services together with the removal of punitive laws and policies and on reducing stigma and discrimination. They put people at the centre, especially the people most at risk and the marginalized—young women and girls, adolescents, sex workers, transgender people, people who inject drugs and gay men and other men who have sex with men.

New HIV service delivery targets aim at achieving a 95% coverage for each sub-population of people living with and at increased risk of HIV. By taking a person-centred approach and focusing on the hotspots, countries will be better placed to control their epidemics.

The 2025 targets also require ensuring a conducive environment for an effective HIV response and include ambitious antidiscrimination targets so that less than 10% of countries have punitive laws and policies, less than 10% of people living with and affected by HIV experience stigma and discrimination and less than 10% experience gender inequality and violence.

Home to 5 million people living with HIV, western and central Africa is not on track to ending AIDS by 2030. Every day, more than 760 people become newly infected with HIV in the region and only 2.6 million of the 5 million people living with HIV are on treatment.

Insufficient political will, frail health systems and weak support for community organizations―as well as barriers such as HIV-related criminalization―are the most significant obstacles to progress. A regional acceleration plan aims to put the region on track to reaching the target of tripling the number of people on antiretroviral therapy by 2020 and achieving epidemic control. While progress has been made, that progress is not coming fast enough. Children are of particular concern―only 28% of under-15-year-olds living with HIV in the region have access to antiretroviral therapy.

“We need policies and programmes that focus on people not diseases, ensuring that communities are fully engaged from the outset in designing, shaping and delivering health strategies,” said Gunilla Carlsson, UNAIDS Executive Director, a.i., speaking at the Global Fund to Fight AIDS, Tuberculosis and Malaria Sixth Replenishment Conference, taking place in Lyon, France, on 9 and 10 October.

There are many examples of how investing in communities can make a difference. “The response is faster and more efficient if it is run by those who are most concerned,” said Jeanne Gapiya, who has been living with HIV for many years and runs the ANSS nongovernmental organization in Burundi.

Community-led HIV testing and prevention is effective, particularly for marginalized groups. “Most of the people tested by communities were never reached before and this shows how community organizations are unique and essential,” said Aliou Sylla, Director of Coalition Plus Afrique.

Reducing the number of new HIV infections among children and ensuring that women have access to the services they need remains one of the biggest challenges in the region. Networks of mothers living with HIV who support each other to stay healthy and help their child to be born HIV-free have been shown to be an effective way of improving the health of both mothers and children.

“Our community-based approach works. In the sites where we work we have reached the target of zero new HIV infections among children and all children who come to us are on treatment,” said Rejane Zio from Sidaction.

Financing remains a concern and although total resources for the AIDS response have increased, and HIV remains the single largest focus area for development assistance for health, domestic investments account for only 38% of total HIV resources available in western and central Africa, compared to 57% worldwide. Greater national investments reinforced by stronger support from international donors are needed to Fast-Track the regional response. Bintou Dembele, Executive Director of ARCAD-Sida, Mali, said, “We have community expertise, but we lack the funds to meet the need.”

Support is growing for community-based approaches in the region. Recognizing the importance of community-led work, Expertise France and the Civil Society Institute for Health and HIV in Western and Central Africa announced a new partnership on 9 October. “The institute brings together 81 organizations from 19 countries aiming to ensure better political influence at the global and country levels and to galvanize civil society expertise in programme delivery. This partnership is a recognition of our essential contribution,” said Daouda Diouf, Director of Enda Sante and head of the steering committee of the institute. “The situation in western and central Africa remains a priority. It is clear that community-based approaches are agile and appropriate for responding to pandemics,” said Jeremie Pellet from Expertise France.

Shifting to a people-centred approach has been at the core of reforms in the region. A growing regional resolve to accelerate the response and to strengthen community-led approaches that have been proved to work provides hope for the future of the HIV epidemic in western and central Africa.

Seven months after launching the catch-up plan in western and central Africa, progress on increasing the numbers of people on antiretroviral treatment continues to lag in the region. Many countries will not reach key targets by 2020 if the current systems remain unchanged.

"Overall we saw a 10% percent increase of people on treatment, which is not enough," said UNAIDS Executive Director Michel Sidibé. "Now, there is even more a sense of urgency."

Mr Sidibé, however, pointed to the success in the Democratic Republic of Congo where there was a clear increase in the number of people living with HIV accessing ARVs. The reasons for the positive trend included civil society and political leadership working closely together as well as community HIV testing and the training of 11 000 health care workers.

"More than ever there is a need to rethink health systems and alternatives for people to access health care," he said.

The call to delegate patient care to communities was a major rallying call during AFRAVIH, the international francophone HIV and hepatitis conference held in Bordeaux, France, early April. Mr Sidibé briefly shared the stage at the opening ceremony with the civil society organisation Coalition PLUS. They declared that the key to success in ending AIDS involved joining forces between doctors and community health workers and giving more leeway to communities to respond to the local needs of their own people.

Under the banner, "De-medicalize" the organisation explained that doctors will never be replaced but that there were too few of them and people living with HIV didn't require acute care.

Coalition Plus' recent report states that governments and the medical practitioners should delegate more tasks to nurses and community health workers. In addition to allowing for more targeted prevention and faster access to treatment, delegation of non-medical tasks would lighten the load on overburdened health systems. West and central Africa represent 17% of the total population living with HIV but 30% of deaths in the region are from AIDS-related illnesses. This is a region, according to UNAIDS and its partners, that can truly benefit from community models of care.

What worries Médecins Sans Frontières (MSF) is the risk of a significant drop in resources for treatment will hamper recent improvements in west and central Africa. This concern stems from the fact that Global Fund estimates a 30% drop in fund allocations to the region for 2018 – 2020 compared to signed HIV grants in the previous allocation period. In 2016, MSF was among the first to sound alarm bells regarding the region's high HIV death toll and the up to 80% of children unable to access antiretroviral therapy. MSF HIV Policy Advisor and Advocacy Officer Nathalie Cartier said that they supported the west and central Africa catch-up plan but that it needed to be fully implemented. "Political will has been promising but now it's time to make it a reality on the ground so that people living with HIV can reap the benefits," she said.

Global Fund supported the catch-up plan and works closely with countries in order to maximize the impact of the investments. They believe that leveraging additional domestic financing for health is crucial to increase country ownership and build sustainable programs.

All the more reason to decentralize healthcare systems and capitalize on innovations to keep health costs down.  HIV self-testing, new medicines and high impact strategies involving communities are critical to improving efficiencies.  "With point-of-care (POC) testing in communities and homes, delays are minimal between diagnosis and initiating treatment," said Cheick Tidiane Tall, Director of Réseau EVA, a network of pediatric doctors specialized in HIV care. “In the long run, that's a lot of people and resources saved,” he added.

Côte d'Ivoire Infectious and Tropical Diseases professor Serge Eholié couldn't agree more.  "Flexible health care systems capitalizing on various innovations makes a lot of sense," he said. Turning to the Minister of Health in the Central African Republic, Pierre Somse, he asked, 'How do you respond?'

Mr Somse, also a trained doctor, said, "We doctors will stay doctors. However, there is a need for us to lean on communities and vice versa."  He added, "at the heart of the issue are patients and they are and should always be the priority."