When the Community Treatment Observatories (CTOs) were first set up in 11 countries in West Africa to monitor access to HIV treatment, the programme director described how people were fearing for their lives. The same people are now transforming access to treatment in their communities.
What started in 2017 as a regional project with a small budget has become a global template for community-led healthcare transformation. In 2018 the programme expanded into southern Africa, in Malawi, Zimbabwe and Zambia, and there is demand from civil society around the world for further scale up.
Meza Masese, a Community Health Agent in Zimbabwe, recalls how she was strongly in denial when she first received a positive HIV diagnosis. “I said the machine’s not working, and I tore up the results… I thought HIV was a death sentence.”
Less than two years after the programme expanded into Zimbabwe, Masese is talking in a film produced by ITPC’s Watch What Matters campaign, highlighting how communities are drastically improving access to HIV treatment in countries where ITPC has established a CTO.
The same people who thought HIV was a death sentence are now transforming access to treatment.
WATCH THE 2 MINUTE TRAILER
“When we started, a large number of people living with HIV didn’t have access to treatment services,” says Alain Manouan, Programme Director of the Regional Community Treatment Observatory (RCTO). Back then, Manouan described access to treatment as the “biggest challenge” facing a person living with HIV in West Africa.
In 2017, when less than half of people living with HIV in the region were accessing life-saving treatment, it is understandable why Masese refused to accept her status. At the time, if Masese or anyone else living with HIV had a problem accessing their treatment, due to stockouts or the cost of services for example, there was little they could do about it. Their personal anxieties, health battles and tragedies were simply anecdotes that were hard to get the authorities to listen to or act upon.
Now there is qualitative and quantitative evidence collected right across the treatment cascade, from testing to treatment: “My role here as Data Collector is to collect all the problems in the community,” explains Alida Taha in Côte d’Ivoire. “We then use the data in order to do the advocacy work, and together find solutions for easy access for patients.”
In Sierra Leone, Martin P. Ellie is the CTO focal point. “The CTO helps us to know whether there is a stockout or that stock levels are going down,” he says. “Then we will bring this to the attention of the relevant authorities and now they take action. If action is taken, then drugs are available at the health facilities and people have access to their medication.”
Abdul Rahman Sesay, Director General at the National AIDS Secretariat in Sierra Leone agrees. “They are keeping us on our toes in the sense that they have been putting pressure on us. Whenever there are stockouts they give us the alert,” he says. Sesay can then work, alongside partners, to rectify the situation quickly and further prevent stockouts.
Preventing stockouts – strong systems, funding and a fair market
There are many factors behind why a stockout may occur, which the CTOs are tackling. One key factor that the RCTO has directed advocacy efforts towards is the need for health and community systems to be strengthened and well-managed, and national plans for HIV and AIDS to be fully integrated within these systems.
“Alongside this, it is essential that financing for health is sustainable,” says Othoman Mellouk, ITPC’s Intellectual Property and Access to Medicines Lead. “Governments and donors must back up their political commitments by fully funding the HIV response, and medicines need to be affordable so that ministers with over-stretched health budgets aren’t forced to make procurement decisions that leave some people without treatment. Medicines must also be available from different sources. Monopolies of unique suppliers must be broken to ensure that procurement benefits from robust competition, both in terms of price and timely delivery.”
National AIDS plans are more effective with community data
ITPC strongly believes that no national AIDS plan or strategy should exist without community data. It informs what matters in order to increase access to testing, treatment and prevention services and makes national plans more effective.
“The need for CTOs is very high,” Manouan has observed. “Every country we went to civil society was asking how we could help them put a CTO into place.”
“I think this programme should go everywhere,” says Masese. “The clients are very happy because if they have challenges they come to us and we can say, ‘it’s OK, it being solved, we can take your cases further’.”
About Watch What Matters
Watch What Matters is a community monitoring and research initiative that gathers data on access to and quality of HIV treatment globally. The RCTO in West Africa is turning its findings into recommendations, to ensure that those in power remain accountable to the communities they serve, and aims to improve and increase access to HIV treatment.
Watch the film in full in French and English (10 mins).