Significant advances have been made in HIV treatment over the last 30 years; the efficacy of antiretroviral drugs (ARVs), scaling up their access, implementing ways that bring treatment closer to people.
Once considered an automatic death sentence, today HIV is considered more of a chronic disease – given access and adherence to treatment, people living with HIV should remain alive and healthy.
Despite the advances that have been made however, people continue to die from HIV-related causes and there remains many gaps and challenges in providing people with treatment.
As of the end of 2021, only 52 per cent of children living with HIV were receiving ARV treatment.
Around 650,000 people died in 2021
Numbers on treatment started small, then scaled up
In the late 1990s and early 2000s, we witnessed first-hand the toll that HIV and AIDS was taking on vulnerable communities. Within MSF, there was much internal debate about whether MSF as an emergency organisation should be involved in providing life-long antiretroviral (ARV) treatment.
At first, MSF was limited to treating opportunistic infections, such as Kaposi’s sarcoma, a form of cancer, among people living with HIV. In 2000, ARV treatment cost more than US$10,000 per person per year and was generally provided in hospital settings under the supervision of a doctor. Some questioned whether treatment was too complex to be provided successfully in low-income and low-resource countries.
Nonetheless, that year, we started providing ARV treatment to a small number of people living with HIV in projects in Thailand and Cameroon. In the beginning, our doctors in Thailand put small numbers of people on treatment thanks to ARVs that were smuggled in the suitcases of KLM flight attendants.
Research conducted by MSF in Uganda, Kenya, South Africa, Malawi and Thailand played a historical role in demonstrating the feasibility and effectiveness of HIV treatment in resource-limited settings.
Coupled with work from MSF's Access Campaign (then the Campaign for Access to Essential Medicines) and activist groups around the world to bring down the cost of drugs, this evidence helped drive efforts to scale up access to lifesaving ARV treatment.
In 2021, there were nearly 40,000 people living with HIV receiving treatment under direct MSF care; a further nearly 50,000 people were receiving treatment in programmes supported by MSF.
Evolution of HIV
Graph showing the evolution of the number of people living with HIV, the numbers of those who have access to antiretroviral treatment, and those who die each year. Source: UNAIDS Global HIV & AIDS statistics — 2021 fact sheet
Treatment today
HIV treatment has been significantly scaled up over the last decade, from 7.5 million in 2010 to nearly 29 million today. But with 38 million people living with HIV, that leaves 9 million people who are not on treatment.
Over the years, MSF has piloted and developed ways of decentralising treatment and task-shifting testing and treatment from doctors to nurses and health workers. The most successful models of care for people living with HIV are those with a patient-centred and community-focused approach.
Today, a person who tests positive for HIV is offered counselling and started on treatment immediately – this is known as 'test and start'.
Examples of a patient-centred approach
- Adapting clinic opening hours to suit the patients. MSF has several adapted models, such as early morning clinics so people can drop by on their way to work, and late-night clinics for sex workers.
- Letting people have three- or six-month supplies of their daily ARV drugs instead of the usual one-month supply. This reduces the burden of time and money involved in going to the clinic and picking up the drugs (but pharmacy regulations often prevent this simple measure being implemented).
- Adherence clubs for people who are stable on treatment. First piloted by MSF in South Africa, this approach allows HIV patients to meet every two months at a local clinic or community centre to collect their treatment from a lay worker.
- Listening to the challenges faced by people living with HIV and working out realistic solutions together. This is done during clinical consultations or counselling sessions.
Adhering to treatment
Once a death sentence, people living with HIV who adhere to regular ARV treatment are now able to live long and healthy lives. In addition, studies have shown that people who stick with their treatment and have undetectable levels of virus in their blood have virtually zero chance of passing the disease to someone else.
HIV is a lifelong disease. People need to take ARVs every day of their lives to keep the virus at undetectable levels and stay healthy. If a person, for whatever reason, stops taking their medication, the virus will start to replicate, attacking the immune system and the person can become sick.
The virus can then become resistant to first-line medications, meaning people will need to switch to more expensive second- or even third-line ARVs to get the virus under control and become healthy again.
Counselling and support from family, friends and the community can help someone overcome the issues of taking drugs daily and living with a chronic illness. Different models of care - many of which we have piloted - can help people adhere to treatment.
Community models of care
Many of the countries where the HIV burden is highest are developing countries, especially in sub-Saharan Africa. With huge health system needs and few resources, these countries struggle to deal with a continuous flow of patients who require lifelong follow up and treatment.
Healthy people on ARV treatment do not need intensive medical care. People living with HIV who are healthy want to live a regular life, without having to frequently come to overcrowded hospitals and queue for hours just to pick up their medication.
Community models of care address both sides of the problem of treatment scale-up. From a patient’s perspective, health services are adapted to their need for ongoing care. From a health system perspective, it frees up often scarce human resources to start more people on treatmentand attend to those who are more in need of support.
We continue to develop models of care according to the context, from more health facility-driven approaches to more patient-led approaches. Several models can even co-exist in one setting to fit the needs of different populations.
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Community ART groups - CAGs
MSF and HIV
While we continue to support and provide treatment to different groups of people living with HIV, today we have a particular interest in supporting under-represented groups; people who make up key populations or groups, and those with advanced HIV.
Addressing the needs of key groups
So-called ‘key populations’, or groups, include people who are disproportionately affected by HIV, including sex workers, people who use drugs, men who have sex with men, and prisoners. These groups, with their partners, account for 70 per cent of new HIV infections worldwide and 85 and 95 per cent of new HIV infections in both the Middle East and North Africa, and Eastern Europe and Central Asia regions, respectively.
Despite their higher risk of acquiring HIV, key groups are often excluded from accessing HIV treatment and prevention as well as comprehensive health services. Stigma, discrimination, social exclusion, violence and criminalisation are part of their daily struggles.
In Mozambique, MSF provides packages of HIV and sexual and reproductive healthcare services for sex workers and men who have sex with men in key sites.
Advanced HIV (AIDS)
With the huge global increase in access to ARVs and the transformation of HIV treatment into a chronic treatable disease, many thought that AIDS would disappear. However, nearly one-third of HIV patients are diagnosed at a late stage of the disease, also known as AIDS. In 2021, 650,000 people died of HIV worldwide.
Furthermore, many people living with HIV already on treatment face struggles in maintaining taking their daily dose and stop taking treatment. For others, their treatment stops working for them.
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Free care for patients with advanced HIV in Bangui
More than two-thirds of people with AIDS who are admitted at the MSF-supported hospital in Nsanje, Malawi have been on ARVs before. At MSF’s hospital in Kinshasa, DRC, this figure is 71 per cent. Among these, more than 25 per cent of people arrived too late to be saved.
HIV lowers the body's immune response, and without effective treatment, leaves people living with the disease much more vulnerable to deadly opportunistic infections.
Globally, the leading causes of death among those who die of AIDS include preventable diseases including tuberculosis (TB), severe bacterial infections, cryptococcal meningitis, Kaposi’s sarcoma, toxoplasmosis and pneumocystis pneumonia – all opportunistic infections.
TB is the leading cause of death among people living with HIV, accounting for around 30 per cent of AIDS-related deaths.
Around 55 per cent of people living with HIV and TB are unaware of their coinfection and are therefore not receiving care for TB.
Our response to AIDS is rapidly evolving across multiple countries and projects in sub-Saharan Africa. We provide or support the provision of free treatment of AIDS in four hospitals in sub-Saharan Africa, which includes training and mentoring health staff and providing drugs to treat opportunistic infections.
In all HIV projects, we are developing and implementing basic packages of diagnostics and treatment, as well as improved treatment literacy and adherence support to help quickly detect and treat AIDS-related disease earlier, and ultimately to reduce deaths.
We want to see these approaches funded and rolled out across countries with HIV burdens, to ensure that people living with HIV stay healthy, no matter what their life circumstances are.
Challenges in providing treatment
While progress has been made in recent years, persistent treatment gaps in many countries threaten lives. Globally agreed goals to curb the HIV epidemic by 2020 were missed.
Low HIV prevalence contexts
Lower rates of HIV prevalence in West and Central Africa's 25 countries, ranging from two to 10 percent, have long resulted in less attention and investment in its overall HIV response. Here, according to UNAIDS, while 80 per cent of adults now have access to ARVs, children living with HIV lag far behind, with only around one-third receiving treatment.
In the Middle East and North Africa (MENA), it's even worse; while the rate of prevalence is very low (0.1 percent), not even half of people living with HIV are on treatment.
In Central African Republic (CAR), two-thirds of people living with HIV are diagnosed with advanced HIV before they start treatment. In Bangui, the capital of CAR, people living with HIV have told of being charged US$2.70 for HIV testing and $9 for a month’s supply of ARVs, a fortune to most. As a result, many remain untested or once on treatment, become defeated and give up on care.
In countries like DRC, HIV is highly stigmatised and people hide their status. Payments for care and drugs is another major factor behind why people develop very advanced stages of disease and delay seeking care.
We are trying to come up with ways to tackle these challenges. For example, in DRC, we established community ARV distribution points, also referred to as PODIs (from the French Points de Distribution Communautaires). The PODIs were purposefully set up independently of public health centres, where patients are often made to pay for consultations, tests and drugs.
Under this approach, every three months individuals visit a community distribution point managed by a network of people living with HIV. Lay workers dispense ARVs free of charge to the patients. Patients visit the health facility once a year for a free clinical consultation and CD4 - or immune level response - monitoring to check how well their treatment is working.
Conflict contexts
Providing people with regular care for HIV - ensuring they have a continuous supply of drugs - in conflict settings can be difficult.
In Zemio, CAR, we ran an HIV programme with community groups, covering around 1,600 patients. In July and August 2017, conflict broke out in the area and after an attack on civilians at the hospital in July - in which a baby was shot dead in her mother's arms - our staff tried to continue the programme.
But with armed men in the hospital’s vicinity, it became too risky for patients to reach the clinic and collect medications. After the attacks, when most of the people had fled, we lost all access to these patients and had to suspend the programme.
In Yemen, providing uninterrupted treatment during years of war has proved logistically challenging - and dangerous to our staff and patients. Our teams worked across the country – where the disease is highly stigmatised – to try to get two- to six-months' supply of drugs to people in unstable areas.
After achieving independence, South Sudan was plunged into over six years of civil war, ending in early 2020. Because of the conflict, we had to adapt treatment strategies in Yambio where our teams run mobile clinics, and call into villages around the country to provide testing and several months' supply of drugs for treatment.
In CAR, Yemen and South Sudan we developed the strategy of providing ‘runaway bags’ – containing up to six months’ worth of ARVs – to people in areas where conflict had broken out. This allowed people to adhere to their treatment, even if they were no longer able to access clinics to receive drugs for their treatment.
Prices and supply of drugs
While it can be challenging to provide people living with HIV with treatment in low-prevalence and conflict settings, it can be difficult to get the needed supply of ARVs in the first place.
Some countries, particularly those in West and Central Africa, and some in Southern Africa experience recurrent supply issues and stock-outs of HIV commodities, including medicines. Dwindling levels of international funding, poor forecasting of drug needs, and supplies frequently stuck at central distribution points are among the reasons why drugs don't make it to people.
In CAR and in DRC, our staff regularly witness the impact of stock outs and shortages of drugs and diagnostics. This implies that people can’t be tested or started on treatment. Those already on treatment face the risk of developing opportunistic infections or viral resistance, which greatly reduces their chances of survival.
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The impact of insufficient HIV funding in Central African Republic
Prices of ARVs - especially newer drugs - can also hinder access to treatment for people. The cost of treatment for the preferred first-line regimen has come down from the $10,000-plus highs in 2000, to just around $63 per person per year, today.
But people who have failed first-line treatment and need second- or even third-line - or salvage - regimens, face paying significantly more. People who need these newer drugs need to pay up to $290 per person, per year - or over four times the price of first-line - for second- or third-line regimens.
Until 2020, third-line regimens cost up to $2,200 per person, per year – beyond the reach of many people. However, one of the newest drugs in that regimen, darunavir, had its price slashed following an agreement that allowed generic production.
Free-fall: price of HIV drugs tumble 99% in a decade
The cost of first-line treatment - using drug combination lamivudine/stavudine/nevirapine - for HIV fell by more than 99 per cent over a decade.
Prevention
In addition to testing and treatment, our comprehensive HIV programmes generally include health promotion and awareness activities, condom distribution, HIV testing, counselling, and prevention of mother-to-child transmission (PMTCT) services.
HIV testing
HIV testing plays an important role in prevention programmes, by identifying those who need treatment, thus reducing the risk of infection to others. In many places, the fear and stigma still associated with HIV and limited access to testing means many are still reluctant to test. We have piloted HIV self-testing in different settings, by offering people take-home kits to test for HIV, along with advice on what to do should their test come back positive.
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Self-testing for HIV in Eswatini
Pre-exposure prophylaxis (PrEP)
One preventive measure is pre-exposure prophylaxis (PrEP), which means people who are at high risk of HIV infection receive and take ARVs to keep the virus at bay. For example, in Eswatini, we offer PrEP to people whose partner or spouse is HIV-positive.
Preventing transmission from mother to baby
PMTCT involves giving ARV treatment to the mother during and after pregnancy, labour and breastfeeding, and to the infant just after birth. In South Africa, mother-to-child transmission remains relatively high at 4.3 per cent when a baby reaches 18 months of age.
In response, MSF developed Post Natal Clubs, which bring HIV-positive mothers and their babies together for regular health sessions for the baby’s first 1,000 days. This ensures mothers stay successfully on treatment, reducing the risk of transmitting HIV to their children during breastfeeding.