A new programme to improve care for people with advanced HIV disease (AHD) has been launched in Kinshasa by the non-profit medical research organization Drugs for Neglected Diseases initiative (DNDi), in close collaboration with the Ministry of Health of the Democratic Republic of Congo (DRC) through its National AIDS Control Program (PNLS).
The programme aims to reduce AIDS-related deaths by strengthening early screening and improving patient referral and treatment at primary-level health facilities. It is part of the Improved Access to AHD Care and Treatment for HIV (IMPAACT4HIV) project, a global consortium led by the Aurum Institute and funded by Unitaid, which aims to improve diagnosis, treatment, and delivery of care for people with advanced HIV disease. The project works across six high-burden countries that together account for a quarter of global HIV-related deaths.
A person with HIV is considered to have AHD if their CD4 count falls below 200 cells per microliter of blood (CD4 white blood cells play a key role in immune response) or if they have life-threatening infections such as cryptococcal meningitis, tuberculosis, or severe bacterial infections that are considered by the World Health Organization (WHO) as AIDS-defining.
‘Advanced HIV is a neglected disease because there’s too little funding and research focused on preventing, detecting, and treating it,’ said Dr Justine Odionyi, Head of Disease HIV at DNDi. ‘Many of the infections that affect people with advanced HIV are treatable, but the tools to diagnose and manage these infections are becoming harder to access, especially given global health budget cuts, and there hasn’t been enough effort to develop better tools to prevent AIDS-related deaths.’
In 2023, the DRC had an estimated 520,000 people living with HIV and around 11,000 people lost their lives to AIDS-related illnesses. This new implementation project seeks to help reverse that trend by reaching people earlier and bringing life-saving care where they live.
‘We are already seeing the impact of HIV funding cuts in the DRC, with stockouts of HIV testing kits reported across multiple health facilities,’ said Chirac Bulanga, DNDi’s DRC Director. ‘Without early detection and treatment, thousands more will progress to advanced HIV. In the face of declining global commitment to HIV programmes, we must act urgently to strengthen scientific collaborations to ensure that, no one is left to die from treatable opportunistic infections.’
The three-year project adopts a ‘hub-and-spoke’ model to decentralize advanced HIV services to lower-level facilities. DNDi has trained health workers from nine clinics, or ‘spokes’, to conduct CD4 testing, which measures the strength of a person’s immune system, and to screen for infections like tuberculosis and cryptococcal meningitis, which are common in advanced HIV. DNDi has also supplied essential medicines for the management of these conditions, enabling health workers not only to diagnose but also to initiate treatment and support patients who had previously stopped their antiretroviral therapy. More complex cases will be transferred to the central referral hospital ‘hub.’
‘Decentralising care for advanced HIV disease is not just a strategy, it’s a lifeline,’ said Remilekun Peregrino, Project Director for IMPAACT4HIV at the Aurum Institute. ‘Through this partnership in the DRC, we are ensuring that people are diagnosed earlier, treated closer to home, and supported by their communities. This kind of integrated, community-led approach is essential to preventing avoidable deaths and building a more resilient HIV response.’
Community health workers, also known as peer educators, trained under the project provide psychosocial support, help ensure treatment adherence, and accompany patients referred from lower-level facilities to the referral centre.
The project is being implemented in collaboration with the PNLS to ensure alignment with national HIV strategies and coordination at the health zone level as well as with community groups of people living with HIV, including UCOP+, Jeunesse Espoir, and RNOAC.
‘PNLS welcomes this initiative, which comes at a critical time to strengthen our response to Advanced HIV Disease,’ said Dr Don Nzeza, AHD Focal Point for Kinshasa, PNLS. ‘It offers a path of hope by making care more accessible, even as we face serious challenges, including the risk of service disruptions due to funding freezes.’
Civil Society partners will also lead the rollout of a ‘Welcome Back to Care’ approach to support patients who had temporarily stopped treatment. At the end of the project in Kinshasa, an evaluation will track patient outcomes to inform potential scale-up to other provinces.
DNDi is also working with DRC health authorities to update treatment guidelines to align with the WHO-recommended package of care for people diagnosed with AHD. In addition, a new study will soon be launched to assess the burden of histoplasmosis, a serious fungal infection often misdiagnosed as TB, and conduct research into severe bacterial infections common in people with AHD.
To help close treatment gaps, DNDi is also developing a new, easier-to-use formulation of flucytosine, a key medicine for treating cryptococcal meningitis, one of the most common and deadly infections in advanced HIV. Now in Phase II trials in Malawi and Tanzania, the sustained-release version reduces dosing from four times to twice daily and comes in pellet form, making it easier to swallow or administer via feeding tube for the patients in coma or reduced consciousness. The flucytosine trial is financially supported by the European and Developing Countries Clinical Trials Partnership Association (EDCTP2) programme supported by the European Union (grant RIA2018CO-2516), the Swiss Agency for Development and Cooperation (SDC), Switzerland; Médecins Sans Frontières International, and other private foundations and individuals.
About DNDi
The Drugs for Neglected Diseases initiative (DNDi) is a not-for-profit medical research organization that discovers, develops, and delivers safe, effective, and affordable treatments for neglected people. DNDi is developing medicines for sleeping sickness, leishmaniasis, Chagas disease, river blindness, mycetoma, dengue, paediatric HIV, advanced HIV disease, cryptococcal meningitis, and hepatitis C. Its research priorities include children’s health, gender equity and gender-responsive R&D, and diseases impacted by climate change. Since its creation in 2003, DNDi has joined with public and private partners across the globe to deliver 13 new treatments, saving millions of lives. dndi.org
Media contacts
In Kinshasa (DNDi DRC Office): bwamona@extern.dndi.org
In Nairobi (DNDi Eastern Africa Office): emagak@dndi.org
