In 2002, Doctors Without Borders (MSF) teams opened the first outpatient treatment centre offering free care to people living with HIV in Kinshasa, the capital of the Democratic Republic of Congo (DRC). Twenty years later, while great progress has been achieved in the country, major gaps remain in testing and treatment, causing thousands of preventable deaths each year.
When the doors of MSF's treatment centre opened in May 2002, the situation was critical: more than one million men, women and children were living with HIV in the DRC, but antiretroviral (ARV) treatment was scarce and unaffordable in the country. By the early 2000s, the virus was killing between 50,000 and 200,000 people each year, according to UNAIDS.
"For many, being infected with HIV was just a death sentence," says Dr Maria Mashako, MSF's medical coordinator in the DRC. "The cost of antiretroviral treatment made it just inaccessible to most patients. Even MSF, in the early months of the centre, did not have ARVs. Our team could only treat symptoms and opportunistic infections. It was very hard.”
Clarisse Mawika, 60, tested positive in 1999. She remembers these dark years all too well.
"I don't like to think back about those times," she says. "When I got the result of my blood test, I thought ', prepare your funeral'. Fortunately, my family chipped in to send me drugs from Europe. But at some point, they couldn't afford to pay anymore. I had to stop treatment for several months. My condition started to deteriorate. That's when someone I knew told me about MSF.”
Over the years, we have doubled its initial bed capacity, but we still have to regularly put up tents to accommodate patients. This reflects the immense challenges that remain in the fight against HIV/AIDS in the DRC.”Dr Mashako
MSF driving progress against HIV/AIDS
Being the first health facility to offer free ARVs to patients in Kinshasa, MSF's treatment centre was soon overwhelmed by the large number of people in need of treatment.
"It was just unbearable," recalls Dr Mashako, still a young doctor in the facility in the mid-2000s. "Consultations started at dawn and ended at night. There were so many patients..."
To increase access to care and treatment, MSF started supporting other health centres and hospitals in the provision of free screening tests and access to treatment and care. In Kinshasa alone, around 30 health facilities benefitted from this MSF support over the past two decades.
Our teams also set up a pilot model of care that allowed nurses to prescribe treatment and follow up HIV-positive patients. This was a crucial initiative as only a handful of doctors per province were allowed to do so back then.
MSF opens the very first free HIV treatment centre in Kinshasa
In May 2002, MSF opens the very first free HIV/AIDS outpatient treatment centre (OTC) in Kinshasa. Located on Kabinda avenue (hence often referred to as the “Kabinda OTC”), the centre also offers free HIV tests for all.
At this time, antiretroviral treatment (ART) is rare and extremely expensive in the country, leaving people affected by the virus in a catastrophic situation. Initially, MSF teams do not have ART and can only provide symptomatic treatment to patients, notably against opportunistic infections, which tend to develop in patients with advanced HIV (AIDS) due to their weakened immune systems.
From 2002 onwards, MSF starts setting up HIV programmes in different provinces of the DRC.
Six months after the opening of the Kabinda OTC, MSF launches the first peer support group for people living with HIV in the capital city. Over the years, these patient-run support groups have multiplied throughout the city and the country.
MSF introduces free antiretroviral treatment for its patients
In 2003, the cost of ART treatment decreases but still exceeds $40 US per month. MSF starts providing free ART treatment for its patients in Kinshasa and Bukavu.
MSF supports the set up of a people living with HIV network
To reinforce patients’ adherence to treatment and help them fight for their rights, MSF helps support groups to set up their first association, which later becomes the national network of people living with HIV organizations (RNOAC). From 10 members in 2004, this network now has more than 15,000 members and activists in 13 of the DRC's 26 provinces.
MSF decentralises HIV care to other facilities
Barely two years after the opening of MSF’s treatment centre in Kinshasa, 3,000 patients are followed up there, of whom more than 1,400 are receiving free ART.
Yet, access to HIV care and ART outside MSF’s centre remains scarce, and MSF decides to decentralise the services offered at the OTC to three other health centres in Kinshasa.
At the time, Congolese authorities only allow a small number of doctors to prescribe ARTs in the country. To increase access to treatment, MSF proposes and implements a new model of care in the three newly supported health centres: the prescription of ART by nurses, also in charge of the follow-up of patients. This approach rapidly gives good results: 750 additional patients quickly get access to ARTs in these three health centres.
In September 2005, MSF also starts HIV/AIDS treatment for children at the Kabinda OTC. That year, 82 children are put on ARTs.
MSF provides specific HIV and STIs services for sex workers
From 2006 to 2010, MSF runs the 'Biso Na Biso' ('Between us' in Lingala, one of the official languages in the DRC) centre in Kinshasa’s Masina commune. The facility offers prevention, testing and treatment services for HIV and sexually transmitted infections (STIs) to sex workers, their clients and their children. More than 200 people get their ART through the centre.
MSF opens an inpatient unit for advanced HIV
Six years after the opening of MSF’s outpatient treatment centre, our teams open an inpatient unit to provide free care for patients with advanced HIV. Inaugurated in May 2008, the Kabinda Hospital Centre (CHK) has an initial 24-bed capacity, including four beds for patients co-infected with tuberculosis who must be treated in isolated units.
Next to this new inpatient unit, MSF continues to treat stable patients on an outpatient basis in Kabinda and in several health facilities in the city.
That year, a massive march is organised by civil society organisations with the support of MSF. The activists call for the adoption of a law protecting people living with HIV. And this law comes to life! Adopted and promulgated in July 2008, the law penalises discrimination against people living with HIV and institutes the legal obligation of free testing, treatment and care for HIV/AIDS in all public and private health facilities.
MSF introduces a new ART dispensing system
To facilitate adherence to HIV treatment, MSF introduces a new drug dispensing system in the DRC: the three-month ART refill scheme. Every three months, stable patients come in to receive their stock of drugs for the coming quarter. This multi-monthly dispensing strategy reduces patient travels and transportation costs while decreasing congestion in health facilities.
This innovative approach will be integrated into the recommendations of the World Health Organization in 2016. In the DRC, authorities will include the multi-monthly dispensing system in 2020 in the context of the COVID-19 pandemic to reduce the pandemic’s impact on access to care for people living with HIV.
MSF launches community ART distribution posts
To further increase access to treatment, MSF starts implementing community-based approaches in ART distribution. With the national HIV network RNOAC, our teams set up the first community ART distribution posts in Kinshasa’s Masina and Ngaliema districts.
Managed by associations of patients living with HIV, those distribution posts (called PODI) allow stable patients to get their treatment without having to go to healthcare facilities. This approach empowers patients in their treatment and reduces congestion in health facilities.
Between 2010 and 2017, MSF supports the setting up of six PODIs in Kinshasa. The model will be integrated into the DRC’s national strategic plan to fight HIV/AIDS in 2015. That year, almost 2,300 people were already getting their treatment through the three existing PODIs in Kinshasa.
MSF expands HIV care and denounces the lack of funding
Given the growing number of patients in need of HIV care in Kinshasa, MSF teams increase bed capacity at the CHK and extend their medical support to eight extra health centres and two hospitals. That year, MSF also introduces routine viral load testing at the CHK, a key test to assess the evolution of the infection and the effectiveness of treatment.
That year MSF teams are providing ART treatment to more than 5,000 patients in six provinces, equivalent to more than 10 per cent of the total number of people on ARTs in the country. In Kinshasa, MSF alone provided ARTs to one-fifth of all patients under treatment.
But the HIV/AIDS situation remains critical: in 2012, less than 15 per cent of people living with HIV who need ARTs in the country have access to treatment, one of the lowest coverage rates in the world at the time. MSF publicly denounces the lack of resources provided by the country and its international partners to fight the epidemic. MSF teams in the DRC call on the government and donors to boost efforts to increase antiretroviral coverage.
MSF launches clinical training courses and peer support
MSF teams in the DRC launch clinical training courses for doctors and nurses on advanced HIV and tuberculosis. Since 2013, 145 health professionals have participated in this training. MSF also starts training peer counsellors at the CHK and in other supported facilities in order to provide psychosocial support to patients and strengthen their adherence to treatment.
MSF increases bed capacity and highlight gaps in treatment
In Goma, North Kivu province, MSF launches a new project to provide care and treatment to people living with HIV. In Kinshasa, the alarming bed occupancy rate (over 120%) forces us to increase the capacity to 42 beds.
In collaboration with the national AIDS programme, MSF conducts a study on the availability of essential HIV medicines in Kinshasa. This report, published in October, reveals that three-quarters of the health facilities studied are facing shortages of ARTs. This alarming finding will encourage the Global Fund – one of the DRC's main donors in the fight against HIV/AIDS – to launch initiatives aiming at reinforcing the ART supply chain, including a community-based monitoring programme supported by the Congolese Union of Organisations of People Living with HIV.
Despite these positive steps, gaps and shortages are still one of the major challenges in the fight against HIV/AIDS in the DRC.
MSF warns of lack of funding for advanced HIV and campaigns against stigma
An MSF report sounds the alarm about the lack of funding available in the country to treat patients with advanced HIV. This report sheds light, among donors, on the reality of unmet needs for those patients who remain neglected from the overall HIV response.
That year, according to official figures:
- 63% of people living with HIV have at least one opportunistic infection
- 11% people arrive in a bedridden state for the first consultation
- Only one in two people living with HIV in the DRC knows their status
- Only 38% of people living with HIV have access to ARTs
In 2017, the CHK starts supporting Congolese doctors with advanced HIV specialisation courses. Since then, around 15 doctors are trained every year in the management of advanced HIV.
In the efforts undertaken to fight the huge stigmatisation against people living with HIV in the DRC, MSF collaborates with an association of young people living with HIV and two famous Congolese artists to produce the music video "Zwa Nga Bien" ("Look at me well") and launch a massive media and social media awareness campaign.
In the DRC, discrimination against people living with HIV is still a major barrier to accessing care. Over the past 20 years, MSF has set up several campaigns to fight stigma and has supported organisations of people living with HIV in this daily struggle.
MSF increases access to viral load and early diagnosis testing for newborns
In 2018, only a quarter of people living with HIV who are eligible for viral load testing have access to it. Measuring the viral load of people living with HIV is fundamental to knowing the evolution of their condition and the need to adapt their treatment.
MSF, in collaboration with the Global Fund, decides to expand access to viral load testing and early diagnosis for newborns of HIV-positive mothers in 14 health zones in Kinshasa. MSF organises the collection, analysis and return of blood samples in the supported health facilities while training is healthcare providers on viral load monitoring. Between March and December, viral load coverage in the targeted health zones increases from 5 per cent to 53 per cent. This model will then be replicated by other partners.
MSF launches youth HIV clubs
At the CHK, MSF launches a new initiative: clubs for young patients living with HIV. These youth clubs offer patients from 14 to 25 a space where they can support each other, help overcome the challenges of stigma and increase their adherence to treatment.
The initiative has been replicated in two other facilities supported by MSF as well as in four districts of Kinshasa in collaboration with the “Jeunesse Espoir” (Youth Hope”) association. The model is bearing fruit: an analysis carried out in August 2022 in four youth clubs showed that 100 per cent of those who joined the clubs that year with an undetectable viral load had managed to keep it below this threshold, demonstrating their good adherence to treatment.
MSF continues to expand the range of care available in primary healthcare facilities by integrating the diagnosis and management of advanced HIV in eight health centres in Kinshasa. MSF also sets up a microbiology laboratory at the CHK to rapidly detect antibiotic-resistant bacteria that cause infectious diseases in patients living with HIV.
Where are we now?
As of today, MSF is supporting the Congolese Ministry of Health in the provision of free care for thousands of patients living with HIV in Kinshasa and in six provinces: North Kivu, South Kivu, Maniema, Ituri, Kasai Oriental and Kongo Central.
In Kinshasa alone, over the past 20 years:
• more than 21,000 patients with advanced HIV were admitted to the CHK, including nearly 700 children
• nearly 19,000 patients were put on ART by MSF, including 14,700 at CHK
• more than 15,000 stable patients were followed up on an outpatient basis at the CHK, including 2,129 children
• 26 health centres and five hospitals were supported
Besides the medical support provided in Kinshasa and throughout the country, MSF teams keep on advocating for a more robust HIV response as challenges remain massive despite the progress obtained over the years. Major challenges include:
• Voluntary testing remains expensive in a country where three quarters of the population still lives on less than $2 a day.
• The prevention of mother-to-child transmission of HIV has suffered worrying setbacks in recent years.
• Two thirds of children living with HIV are not on ART.
• Viral load testing remains largely inaccessible in the country.
• National and international financial resources available for prevention and care remain insufficient in relation to the country's needs.
In 20 years, this support resulted in the training of countless health workers and nearly 19,000 people receiving free ARV treatment in Kinshasa alone.
"This medical support was, of course, essential, but not enough," says Dr Mashako. "We had to limit congestion in health facilities while bringing treatment closer to the patients. That is why we worked with the national network of patients’ associations to launch ARV distribution posts directly managed by patients.”
Clarisse was one of the driving forces behind the launch of those community-based distribution posts, called “PODI”, in the DRC.
"When we launched the first two posts in Kinshasa in 2010, less than 20 patients were getting their treatment from it," she recalls. "Today, there are 17 PODIs in eight provinces, and more than 10,000 patients go there to get their medicines."
The approach proved so successful it was eventually integrated into the national HIV/AIDS plan.
Advanced HIV as a mirror of massive gaps
Great progress has been achieved over the years in the fight against HIV/AIDS in the DRC, and the current situation is just incomparable to that of 2002: access to treatment has been greatly expanded, and over the last 10 years, the number of new infections has dropped by half.
Yet, MSF's work in the country has been constantly carried out against a backdrop of insufficient national and international resources to win the fight against HIV/AIDS and ensure access to treatment and care for all.
"When we set up an inpatient unit dedicated to the provision of care for advanced HIV in 2008, we didn't think that it would still be full of patients more than a decade later,” says Dr Mashako. “Over the years, we have doubled its initial bed capacity, but we still have to regularly put up tents to accommodate patients. This reflects the immense challenges that remain in the fight against HIV/AIDS in the DRC.”
Since its opening, more than 21,000 people have been admitted to MSF’s advanced HIV care unit in Kinshasa.
“In 2021, UNAIDS still estimated that one-fifth of the 540,000 people living with HIV in the DRC did not have access to treatment and that 14,000 people had died of HIV in the country,” says Dr Mashako “As a doctor, I am appalled that so many lives are still being lost for nothing,"
Boosting efforts is urgent and vital
The DRC depends almost exclusively on international donors in the fight against HIV/AIDS. However, their support is insufficient, given the scale of the challenges.
“This is a reality that we have been denouncing for years," says Dr Mashako. “This lack of funding is largely responsible for the lack of free voluntary testing, the lack of training for healthcare providers, chronic shortages of medicines or massive disparities in HIV services between provinces.”
According to the Congolese national AIDS control programme, only three provinces have adequate equipment to measure patients’ viral load, which is key for assessing the evolution of the infection and the effectiveness of treatment. Setbacks in the fight against HIV/AIDS have been confirmed recently. For instance, activities aimed at reducing mother-to-child transmission of HIV – by testing pregnant women and putting them on treatment – are on the decline. A quarter of children born to HIV-positive mothers did not have access to paediatric prophylaxis at birth, partly because of paediatric ARV shortages. And two-thirds of children living with HIV are not on ARV treatment.
"HIV will not be defeated in the DRC if stakeholders don’t boost up efforts," says Dr Mashako. "If I only had one wish, it would be that MSF would not be here in 20 years' time to treat so many patients with HIV."
In 2022, MSF is supporting the Ministry of Health in the provision of HIV/AIDS care and services in Kinshasa and in six provinces of the DRC (North Kivu, South Kivu, Maniema, Ituri, Kasai Oriental and Kongo Central). This support takes the form of direct patient care, training for healthcare providers and the provision of essential medicines and medical supplies.