ITPC has been monitoring the scale up and quality of HIV treatment in different countries around the world over the last decade. Through this work, we refined a model for community-led monitoring known as a community treatment observatory (CTO).
Pioneered by ITPC, a CTO is a mechanism that systematically collects data to monitor trends on treatment access along the HIV Cascade to be used for targeted action. Monitoring of health systems by communities increases government accountability and informs targeted advocacy actions that can improve HIV treatment, particularly for key populations.
In 2019, ITPC implemented the Regional Community Treatment Observatory in West Africa (RCTO-WA), a project led by ITPC Global and ITPC West Africa, and including partners in 11 West African countries. Funded by the Global Fund, the three-year project empowered networks of people living with HIV to systematically collect and analyze qualitative and quantitative data on barriers to access.
The goal was to increase access to treatment in 11 West African countries:
- Benin,
- Côte d’Ivoire,
- Gambia,
- Ghana,
- Guinea,
- Guinea Bissau,
- Liberia,
- Mali,
- Senegal,
- Sierra Leone and,
- Togo.
Data collected by the RCTO-WA reinforced the known experiences of communities in West Africa. Stigma and discrimination, lack of knowledge and awareness, and procurement failures prevent key populations from accessing the prevention and treatment services they want and need. Click here to read more about these issues.
Our full-length Data For A Difference report outlines key findings, analysis and advocacy opportunities from the RCTO-WA.
This four-page Fact Sheet highlights significant gaps in the HIV care continuum across the eleven countries.
Originally presented at IAS 2019 in Mexico, this poster highlights a range of key findings from the RCTO-WA Project.
ITPC regional networks have organized observatories in Latin America, and West, Central, and East Africa. Learn more about CTOs in our comprehensive guide: The CTO Model Explained. Available in English and French.
The countries we worked in
While there is considerable accomplishment in delivering life-saving antiretroviral therapy to 20.9 million people globally, we cannot forget the immense inequalities in treatment access among certain populations and in certain locations. In West Africa, only one in four people living with HIV have access to antiretroviral therapy (PDF 3.7mb). In some countries, the state of treatment access is even worse.
Learn more about the situation in each of the countries we worked in:
Benin
The background
Benin has around 70,000 people living with HIV, of which fewer than 29,000 people are on antiretroviral therapy (ART). The country currently has no data on those retained on ART. Where data is available, it is often not disaggregated by key populations (specifically men who have sex with men, sex workers, people who inject drugs, pregnant women, and youth).
The problem
People living with HIV in Benin face significant barriers to accessing prevention, treatment, and care services. Such barriers include stigma and discrimination, lack of knowledge about HIV and treatment services, and economic barriers related to transportation. Reported cases of ARV stock-outs are minimal, but commodities for CD4 and viral load tests have been reported out of stock for at least one year.
Cote d’Ivoire
The background
In Cote d’Ivoire there are more than 420,000 people living with HIV, of which an estimated 140,000 are on HIV treatment. The countries first-line ARVs are fully funded by the Global Fund and reported to be rarely out of stock. However, with only 31% coverage of people receiving antiretroviral therapy, UNAIDS has identified it as one of three countries in the region that is in dire need of services. In February 2017, Cote d’Ivoire launched the ‘Test and Treat’ protocol, with all health facilities now initiating people on ART as soon as the results of their HIV test are known.
The problem
Key populations and people living with HIV in Cote d’Ivoire face significant barriers to accessing prevention, treatment, and care services. Such barriers include stigma and discrimination, lack of knowledge about HIV and treatment services, and economic barriers related to transportation.
The Gambia
The background
The Gambia has over 18,000 people living with HIV, of which around 4,500 people are on antiretroviral therapy. ARV initiation is currently done at CD4 count <500 uL due to insufficient resources to supply ART to all people living with HIV. Disaggregated data on key populations are not currently being captured in health registers.
The problem
Based on the latest data, it is evident that interventions to expand treatment access in the country are direly needed. Stigma and discrimination are still significant barriers to accessing prevention, treatment, and care services – particularly among men who have sex with men, sex workers, and people who inject drugs. Data is currently not being collected on adherence or retention in care – but reports indicate that treatment monitoring is a particular challenge. Stock-outs of testing reagents, broken testing machines, and lack of knowledge among people living with HIV contribute to low rates of viral load testing.
Ghana
The background
In Ghana there are roughly 230,000 people living with HIV, of which approximately 84,000 are currently on antiretroviral treatment (ART). Most recent data suggests that 92% of those on ART reach at least twelve months retention. However, UNAIDS has identified it as one of three countries in the region that is in dire need of services – particularly since the country adopted a ‘Test and Treat’ protocol.
The problems
Key populations and people living with HIV in Cote d’Ivoire face significant barriers to accessing prevention, treatment, and care services. Health care personnel report that ART sites are underserved and frequently experience small stock-outs of ARVs, which can prevent people living with HIV from receiving treatment for months at a time.
Guinea
The background
There are an estimated 120,000 people living with HIV in Guinea-Conakry, with approximately 35% accessing antiretroviral therapy (ART). Since 2010, new HIV infections have increased by 11% . Health registers do not disaggregate data by key populations. This is a reflection of a widespread belief that key population communities do not use healthcare services – despite UNAIDS data that estimates 14.2% and 56.6% prevalence among sex workers and men who have sex with men, respectively.
The problem
Key populations and people living with HIV in Guinea Conakry face significant social, cultural and institutional barriers to accessing the services they want and need. In particular, stigma and discrimination from family, friends, and healthcare providers deters communities from getting tested and starting treatment. Pregnant women also face challenges in accessing services when they are required to have their husbands’ permission to do so.
Guinea-Bissau
The background
In Guinea-Bissau, there are 37,000 people living with HIV, with around 12,000 currently on antiretroviral treatment.
The problem
People living with HIV in Benin face significant barriers to accessing prevention, treatment, and care services. Such barriers include stigma and discrimination, lack of knowledge about HIV and treatment services, and economic barriers related to transportation.
Liberia
The background
Liberia has around 29,000 people living with HIV, of which fewer than 7,000 people are on antiretroviral therapy (ART). The country currently has no data on those retained on ART. Where data is available, it is often not disaggregated by key populations (specifically men who have sex with men, sex workers, people who inject drugs, pregnant women, and youth).
The problem
People living with HIV in Liberia face significant barriers to accessing prevention, treatment, and care services. Such barriers include stigma and discrimination, lack of knowledge about HIV and treatment services, and economic barriers related to transportation.
Mali
The background
In Mali there are more than 120,000 people living with HIV, of which an estimated 31,500 are on HIV treatment. With only 24% coverage of people receiving antiretroviral therapy, UNAIDS has identified it as one of three countries in the region that is in dire need of services. The country currently operates under a ‘Test and Treat’ protocol, with all health facilities now initiating people on ART as soon as the results of their HIV test are known.
The problem
Key populations and people living with HIV in Cote d’Ivoire face significant barriers to accessing prevention, treatment, and care services. Such barriers include stigma and discrimination, lack of knowledge about HIV and treatment services, and economic barriers related to transportation. Stock-out of both ARVs and laboratory supplies for viral load tests are also reported occasionally.
Senegal
The background
Senegal has 41,000 people living with HIV, of which fewer than 21,000 people are on antiretroviral therapy (ART).
The problem
People living with HIV in Senegal face barriers to accessing prevention, treatment, and care services – including stigma and discrimination, lack of knowledge about HIV and treatment services, inconvenient clinic hours and wait times, and ARV side effects.
Sierra Leone
The background
In Sierra Leone, there are an estimated 67,000 people living with HIV in 2016, among whom 26% are accessing antiretroviral therapy.
The problem
People living with HIV and key populations in Sierra Leone face barriers to accessing prevention, treatment, and care services. Common barriers include stigma and discrimination, lack of knowledge about HIV and treatment services, inconvenient clinic hours and wait times, and ARV side effects.
Togo
The background
There are an estimated 100,000 people living with HIV in Togo, with approximately 38,000 accessing antiretroviral therapy (ART). Since 2010, new HIV infections have decreased by 33%.
The problem
In Togo, civil society is a strong driver of the HIV response and therefore it also fully participates in administering treatment and care to people living with HIV. As a result, some key populations – specifically men who have sex with men and sex workers – are able to more easily access services. Registers at the NGO level are disaggregated by key populations, but not at the public hospital level. However, people who inject drugs are still not being captured in health data and are not being sufficiently reached by prevention, treatment, and care services.
The issues
Data collected by the Regional Community Treatment Observatory in West Africa (RCTO-WA) reinforces the known experiences of communities in West Africa. Stigma and discrimination, lack of knowledge and awareness, and procurement failures prevent key populations from accessing the prevention and treatment services they want and need.
Find out more about the most pressing issues:
Stock outs of first-line ARVs have been reported in Ghana, The Gambia and Cote d’Ivoire. In particular, paediatric ARVs are reported to be frequently out of stock, as are medicines for opportunistic infections. Where ARVs were available, people living with HIV report suffering from side-effects of medications, which directly impacts their adherence. Pregnant women in Guinea-Conakry and Cote d’Ivoire indicated that they did not adhere to their treatment as prescribed because of side effects.
Viral load testing
Treatment monitoring and viral load testing is a major challenge in West Africa. The majority of people living with HIV in the region have no knowledge of viral load testing or its importance. Where available, most countries require blood samples to be sent to a centralized national laboratory, resulting in delayed results. The average turnaround time ranges from two weeks to three months.
Linkage to care
In West Africa, rapid HIV testing is available and offered at health sites, with results provided within 15 minutes. Most countries – with the exception of Guinea-Conakry and The Gambia – antiretroviral therapy (ART) is initiated for those who test positive according to the ‘Test and Treat’ protocol. In The Gambia, ART is initiated when CD4 is equal to or less than 300 copies/ml, and in Guinea-Conakry, when CD4 count is less than 500 copies/ml.
Regardless of ART initiation protocols, more must be done to link people living with HIV to treatment are care. Currently, only pregnant women and female people who inject drugs, who are already linked to health services for other conditions, are likely to be connected to HIV care and treatment services.
Stigma and discrimination
HIV-related stigma and discrimination remain one of the biggest barriers for key populations and people living with HIV. Evident in multiple forms, they affect the ability to access prevention, care, and treatment services.
The repercussions of having a positive HIV test result is enough to deter many from getting tested in the first place. Married and pregnant women face the additional burden of gender norms and local customs that often require women to obtain approval from their husbands in order to get tested. People living with HIV frequently report that the fear of their status being known has caused them to miss appointments and forced them to choose a health centre located further away to prevent them from being seen or recognized. Adherence is also affected, as the fear of family or husbands finding out their status and the resulting rejection caused some to reportedly stop taking their ARVs.
Lack of knowledge and awareness
Across all the countries, there were clear knowledge gaps about HIV among the key and vulnerable populations. The lack of knowledge and awareness has made way for common misconceptions about HIV treatment and care. For example, even among those diagnosed with HIV, many refused to or did not start treatment because of a lack of visible symptoms or the feeling of being “unwell”.
Consistently across the region, while knowledge about HIV prevention, treatment and viral suppression, was low among all populations, it was particularly low among young people who lacked access to basic information on their health.
