A shift in donor funding for HIV has endangered the continued existence of successful and effective antiretroviral adherence clubs in the Free State.
The Mosamaria project, an NGO-run adherence club project based in Mangaung, has in the last five years reached 25 000 people through 21 health facilities and achieved a 98% patient retention rate. The clubs operated on a R4 million a year budget, which translates into about R161 per patient, per year.
These gains are in danger of being reversed as donor support from the Global Fund to Fight AIDS, Tuberculosis and Malaria (GFATM) shifts to other programmes.
Right to Care (a large national NGO), which for five years has been a primary recipient of money from the GFATM, has been distributing funds to Mosamaria. The GFATM distributes funds to a series of so-called primary recipients in South Africa, who then distribute it to specific projects. Right to Care is no longer a principal recipient of GFATM funds and none of the new primary recipients will be stepping in to fund the Mosamaria Project. The key reason for this appears to be that South Africa’s country coordination mechanism (CCM – a committee that submits funding applications on behalf of the country) decided last year that no further application to the GFATM to support community adherence clubs would be undertaken. The CCM is administered by the South African National AIDS Council (SANAC).
Mosamaria’s funding for adherence clubs came to an end on 30 March 2019.
As a result, the Mosamaria project is in the process of being shifted to the Free State health department, a risky move in a province with a poor track record when it comes to health and more especially HIV.
That adherence clubs are part of the solution to South Africa’s HIV epidemic is now widely accepted. The clubs have been a model of successful HIV management since they were first piloted by MSF (Medicins Sans Frontieres) in Khayalitsha in the Western Cape in 2007. By filtering stable HIV positive patients into the clubs it helped patients receive their medicines on a fixed schedule and helped them save time by avoiding regular long hospital or clinic queues. Peer support is also a key part of adherence clubs.
As a result of successful pilot projects, adherence clubs as a model was adopted, along with CCMDD (Centralised Chronic Medicine Dispensing and Distribution) and Fast Lane dispensary services as part of the National Department of Health’s ARV adherence policy.
What clients say
Bloemfontein local Margaret Baratang is one of the Mosamaria patients at Pelonomi Hospital in Bloemfontein. On the morning of her last club meeting with the Mosamaria team, Baratang was angry and deeply anxious.
“These people [Mosamaria facilitators] treat us nicely. I’ve been coming to the club for three years. Every time I’m here 30 minutes then I can go. Now if we must go back to the hospital queue and we will have to wait for two or three hours, I’m telling you,” she says.
She talks as she shuffles up the rows of seats. The queue moves fast. In her hand is her club booklet. It’s covered in decorative wrapping paper. Most of the patients have done the same – they are a support group after all. The foil wraps, the prints of flowers and butterflies represent their care and respect for a club model that’s come to represent service and significance in their lives.
Others in the queue with Baratang include a man who works as a driver. He’s juggling car keys and says he is irritated. His HIV status is his private business and the club model respected this he says, by allowing him to arrive every second month, have a basic medical screening, receive his medicines and still arrive at work on time. Now he will have to explain to his employer and colleagues why he has to take a whole morning off every second month to be at the hospital.
Another patient, Boitumelo Mokeane, launched a petition to the Free State MEC for Health. In representing “concerned people living with HIV”, she said in her petition that patients deserve access to quality healthcare. She raised fears that the Mosamaria facilitators’ expertise would be lost and that CHWs would not be able to cope. Over time Mokeane also said people would default because collecting medicines would become too much of a hassle.
“We don’t want the situation where we have to start from scratch in adjusting with new people and new systems,” she says.
CHWs assigned to take over
With the absorption of the project into the Free State Department of Health, community healthcare workers (CHWs) have been assigned to take over the running of the clubs. Mosamaria facilitators spent the last few weeks while they were still employed, training the CHWs. It was a scramble against time as the Free State’s Chief Director of district health service and health programmes only sent out an internal memo on 6 February. It was a memo to the three affected districts of Fezile Dabi, Mangaung Metro and Xhariep to identify two CHWs per facility to be trained to run adherence clubs. It was also only in February that the Department met with NGOs for a “transitioning meeting”. This was less than two months before Mosamaria was scheduled to wrap up its operations.
Thapelo Mabule, Mosamaria’s outgoing programme manager for the adherence clubs, says often CHWs didn’t show up for training sessions in those weeks.
“CHWs are being paid a stipend by the department of health, not salaries so maybe they don’t care enough to come for training. The clubs as we know them will collapse the minute we hand them over,” he says.
His seems a realistic assessment, because without the structure, that includes salaried facilitators trained in record keeping, monitoring and evaluation and managing patient loads and communicating with the pharmacy for filling pre-packing scripts, the club model has a slim chance of succeeding.
Free State Department of Health spokesperson Mondli Mvambi however, is confident there will be few disruptions. He says: “The transitioning of Mosamaria will not negatively influence the patients as the clubs will continue using the principles outlined in the National Adherence Guideline Standard Operating Procedure. When the project was started the Free State Department of Health was aware that funding was only for a limited period of time, hence the province has worked on a transitioning plan for when funding comes to an end.”
He adds that in addition to the two CHWs assigned to each club, each facility will have a nurse and an operational manager for continued implementation of the clubs and other differentiated care interventions.
“Patients trusted us”
For Connie Motsoeng, a Mosamaria club facilitator, walking away is tough. She says: “We are losing something that we love. Patients trusted us and now we worry that they will suffer without properly run clubs.”
She’s also worried because she has a baby on the way – her second child. She’s one of 39 facilitators and administrators who are now jobless as their posts were funded through Right to Care funding.
According to Mabule, communication with Right to Care has been minimal. Mosamaria were notified that their funding would be discontinued in mid-October last year and they had a close-out meeting with Right to Care in Johannesburg, but not much else has been communicated.
According to Right to Care discussions with Mosamaria were initiated in October 2018 to indicate that the funding will come to an end in March 2019. “Representation to the CCM were undertaken to indicate that adherence clubs will require continued support. The Department of Health indicated that transition plans would be made,” Right to Care said in response to questions from Spotlight. Going forward, Right to Care will provide adherence club services in Ehlanzeni and Thabo Mofutsanyane districts in the Free State with support from the United States government.
By the beginning of December Mosamaria fired off hopeful funding proposals to new Global Fund South African principal recipients and also notified the provincial department of health of the situation.
Trudie Harrison, a Mosamaria co-ordinator, says one local principal recipient didn’t respond, another told them to wait till February to submit proposals. A month after that they were told HIV adherence clubs would not be funded.
“Five months is not enough time to close out a project like this. We did assume that one of the other local principal recipients would continue funding the clubs because they have proven to work so well.
“We are a small organisation but instead of being in the field, we end up spending more time writing proposals, stuck in meetings and following up with would-be funders,” says Harrison.
She adds: “International donors do not consult sufficiently, if at all, with the people who are actually implementing programmes in communities. We just get told by principal recipients ‘the Global Fund has decided …’ without any reasons why this has happened.
Lynne Wilkinson, a differentiated service delivery consultant with the International AIDS Society, says closing out plans need to be properly and effectively managed so there is seamless transfer and patients are not put at risk or under any anxiety over the future of their care.
Wilkinson, who was involved with MSF’s first clubs launched in the Western Cape (that now are run by the Western Cape Department of Health), says it remains government’s responsibility to ensure that adherence club models are not compromised, even as outside funders’ priorities shift.
“The national adherence policy guidelines are in place to ensure that stable patients can access their medication as easily as possible throughout the cycle of lifelong treatment,” Wilkinson says.
She adds too that it’s adherence clubs that have over time proven to be the cheapest most effective model of keeping patients on treatment. She says: “The government’s target is to get another two million people on ARV treatment by 2020, it means we need to use every resource we have. So when an organisation like Mosamaria has successfully built up clubs that have proven to be successful and cost effective, they should be supported and funded, not allowed to fall away.”
South African National Aids Council (SANAC) CEO Dr Sandile Buthelezi drives home the point that donor funding is finite. He says: “Principal recipients [like Right to Care] are aware that their funding is for three years. It is therefore imperative that sustainability plans and transition plans are part and parcel of the application, and the Oversight Committee of the Country Co-ordinating Mechanism ensures that these plans are followed and implemented. In addition, the main reason for the Department of Health to always be part of principal recipients is to ensure that this transition takes place.”
He says SANAC, through its Resource Mobilisation Committee, will canvas for more domestic and donor funding to ensure that ARV adherence is implemented and that South Africa continues to wean itself off foreign donor funding.