Patients want community models of care that make it easier for them to access antiretroviral drugs (ARVs). In resource-poor countries it often takes a lot of time, effort and money to collect the necessary drugs. This discourages many from continuing to take their life-long treatment.
Community models of care are an efficient way of managing growing cohorts of HIV-positive patients in ways adapted to the realities of their daily lives.
These models are a key tool in expanding HIV care. They relieve already overwhelmed health systems in high burden countries, not only making it possible for more people to start treatment but also for more patients to continue their treatment.
Patient-centred care is an approach that puts patients first. It means that patients' realities and constraints are taken into account, and healthcare is adapted to those realities.
The flexibility of the health system is a key factor in allowing a patient-centred approach to care. It is especially important in the fight against HIV, as the majority of people suffering from the disease live in resource-poor countries (only 6.5% of HIV-positive people live in high-income countries; 71% live in sub-Saharan Africa). Most of these countries have weak health systems that cannot manage millions of chronic patients.
- 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 commercial sex workers.
- Letting people have a three- or six-month supply of their daily ARV drugs instead of the usual one-month supply. This lessens 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).
- Travelling to the people in need: for example MSF in KwaZulu Natal province of South Africa organises door-to-door HIV testing.
- Listening to the challenges faced by patients and working out realistic solutions together. This is done during clinical consultations or counselling sessions.
Community models of care address the barriers that stable patients on ARV face in receiving treatment. They were first piloted with stable patients on ARV who did not need intensive medical care.
Community models of care have one overarching principle: they separate appointments to see a doctor or nurse for a check-up (which is only necessary once a year for patients whose HIV treatment is monitored by viral load count and works optimally) from picking up a supply of daily ARV drugs (which, depending on the context, can be as often as once every month). The delivery of drugs is organised at community level through the support of peer groups.
There is a growing cohort of stable patients on ARV, and health systems must adapt to accommodate them by putting them in charge of their treatment and allowing them to organise themselves in innovative ways in order to facilitate access to their medication. In community models of care, communities are involved in the health systems' decisions and community members help each other adhere to treatment. For the patient, it is a way to find strength in a group of people who share a common burden.
To have a shot at ending HIV we not only need to start more people on ARVs, but we also need to keep them on ARVs for the rest of their lives. Only when people are taking their medication daily without interruption do they stop being infectious and are no longer able to transmit the virus.
Stable people on ARV do not need intensive medical care. Today’s HIV patients who are on ARVs and are adhering well to their treatment are healthy and, just like people suffering from diabetes, want to live a regular life without having to frequently come to overcrowded hospitals and queue for hours just to pick up their medication. People living with HIV find support within their community on how to deal with the issues of taking drugs and living with a chronic illness.
The reality of the HIV pandemic though is that the largest public health effort that humanity has ever undertaken to manage a chronic disease is fought primarily in poor countries. These countries cannot cope with a continuous flow of patients who require life-long follow up and treatment. There are huge needs, and few resources. As African health systems are already overburdened, other ways need to be sought to deliver adapted services to growing throngs of HIV patients. The solution is in the hands of the patients themselves.
Community models of care address both sides of the problem of treatment scale-up. From a patient’s perspective, it’s a matter of adapting the health services to the needs of chronic patients; and from a health system perspective it frees up the scarce human resources to start more people on treatment, and make sure that those already on treatment don’t add to the burden faced by weak health systems.
When it comes to community models of care, one size does not fit all. To make the most of very limited resources while responding to huge and growing needs it is imperative to adapt models of care to the specific needs of patients and the capacity of the health systems. MSF has piloted several models, from more health facility-driven approaches to more patient-led approaches. Several can even co-exist in one setting to fit the needs of different populations.
A health-service driven strategy centred around appointment spacing and fast-track drug refills has been implemented in rural Chiradzulu in Malawi. Patients individually attend once every three months for drug refills at the health facility. The drugs are dispensed directly by a lay worker, meaning seeing a nurse is no longer necessary. The drug refill can sometimes be for six months, thereby relieving the patient of the burden and expense of regular travel.
Patients only attend a clinical consultation once every six months, and are tested for viral load once a year.
The adherence clubs model was piloted in the urban township of Khayelitsha in South Africa. Under this approach, patients, led by a lay worker, gather once every two months at the health facility or at a community venue (such as a library) for ARV distribution. The group allows for peer support and health education among its members. Patients visit the health facility once a year for a clinical consultation and a viral load test.
The model is being further expanded within the community, and adherence clubs are being organised in patient’s homes instead of at a health centre.
This model is well adapted to urban environments, especially where time spent at the clinic is an issue for patients.
There are adherence clubs in Khayelitsha, and community adherence groups (see below) and adherence clubs in KwaZulu Natal province.
Adherence clubs have been rolled out independently ofMSF in the whole Western Cape province, and have started to be implemented – also independently of MSF – in the Gauteng and Free State provinces.
Community ARV distribution points are also refereed to as PODIs, from the French Points de Distribution Communautaires. 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 to the patients. Patients visit the health facility once a year for a clinical consultation and CD4 monitoring to check how well their treatment is working.
This strategy was launched in urban Kinshasa, in the Democratic Republic of Congo, in a context of high stigma, and very low ARV coverage (very few health facilities offering ARVs.)
The situation of HIV patients in the DRC is catastrophic: less than 20% of HIV-infected people are on ARV, drugs run out frequently, and as a consequence treatment outcome is poor. At the Centre Hospitalier Kabinda (CHK), an AIDS hospital run by MSF, mortality is as high as 25%. Close to half of the people who die there do so within two days of arriving. Some of the scenes at this hospital haven’t been seen since the height of the pandemic in the 1990s, before the arrival of ARVs.
With this is mind, the retention of treatment results achieved through PODIs in DRC are all the more striking. In Kinshasa, MSF has opened three PODIs (distribution posts) throughout the city, enabling 2,500 HIV patients to access ARVs in their community. The PODIs were purposefully set up independently of public health centres, where patients are often made to pay for consultations, tests and drugs. PODIs also have retention rates of 91% after two years, and preliminary research evaluates their cost at US$8 per patient per year versus US$27 in a public health centre. In DRC, MSF is currently looking at adapting the PODI model in order to further reduce its cost and enable PODIs to be supplied by Global Fund drugs.
By the end of 2014 there were about 2,500 patients using PODIs in Kinshasa.
The last model of care is the community ARV groups (CAGs) that were piloted in rural Tete, Mozambique. In this model patients form groups in the community and the group members rotate to attend the health facility to pick up ARVs for everyone. When the group member on duty returns from the clinic, he or she dispenses drugs to the other members in their home. When the group member goes to the clinic to collect the drugs for everyone, they have their six-monthly or yearly clinical consultation and blood is taken for CD4 or viral load testing.
This model is especially well adapted to rural environments where there is a strong sense of community and where patients have to travel long distances to reach the clinics.
In Mozambique, CAGs are used in rural Tete and in the capital, Maputo. Mozambique has adopted the CAGs as national policy and is implementing them independently of MSF. In Lesotho, CAGs were launched in 2014. The Ministry of Health in Lesotho is willing to roll out the CAG model nationally. Whereas in Zimbabwe, there are CAGs in Gutu and Tsholotsho. In Malawi, there are CAGs in Thyolo. CAGs have also been piloted in Guinea since 2013.
A 2010 study of 17 countries showed that a third of patients on ARVs dropped out of treatment within two to three years. Patients accessing care through community models, however, have better treatment adherence than those who choose to stay in conventional care. In Khayelitsha, South Africa, for example, 97% of patients in adherence clubs remained in treatment after 40 months, compared to 85% of their peers. Among stable patients on ARVs, over 90% of patients in the Tete province of Mozambique were still taking their medication after four years in CAGs. In the DRC, after two years, 91% of PODI members were still undergoing treatment.
Saving money and time
Community models of care save patients money and time. They are required to attend health centres less frequently and so therefore their travel time is lower, as is the cost associated with this.
- When she was pregnant, Mamotsileli from Lesotho had to walk for three hours every month through mountains to pick up her drugs. Now she gets her drugs through a CAG, and when it is her turn she picks up the drugs for the HIV-positive patients in her village. She now only has to attend the health facilities twice a year. In Guinea, half of the patients enrolled in MSF-supported health centres come from outside Conakry, and some have to travel up to two full days to come to the capital to pick up their medication. By forming a CAG they can reduce travel time and cost.
- An analysis in DRC with the community ARV distribution points showed that patients spent three times less to get their drugs at the PODI than if they continued to get their drugs at the hospital. They also had to pay on average three times less in travel costs. It was taken patients on average 14 minutes to pick up their drugs at a PODI, whereas it was almost 1.5 hours at the hospital.
- In Zimbabwe one in seven adults is HIV positive. In Gutu district, a sparsely populated rural area, most HIV patients live 10-20km from the nearest clinic, and some as far away as 46km. Is it really feasible for them to adhere to treatment in these conditions
In the words of a CAG member from Tete, Mozambique: "The advantage of being in a CAG is that you can do other small jobs when you know that a group member will collect ARV for you. This makes things easier."
Qualitative studies show that community models of care, especially the CAG model, increase peer support, lower perceived stigma by their members and may contribute to empowering individuals.
“With the CAG, there is no problem. We meet in public to share our drugs. So what? We are not hiding!” Cacilda, in a CAG in Maputo, Mozambique
“Belonging to a group strengthens people. Moreover, being united people become mentally stronger during treatment compared to those who do it alone.” CAG member, Tete, Mozambique.
Spreading the workload
The spacing of appointments as well as the use of lay workers to dispense drugs means that already overworked nurses can dedicate their time to other things. With the CAGs there is a 59% reduction in ARV refill visits and a 43% reduction in overall clinic visits (data from 2013). This equates to a large reduction in health staff workload.
"When I was 15 years old, my sister fell sick and we took her to Thekerani hospital, the queue was so long and there was only one clinician. We arrived at 07.00 and my sister died right there in the queue at 14.00, it was very difficult to understand. The death of my sister was due to the shortage of healthcare workers and I decided to become one."
Kingston Fry, 25, is one of the recipients of an MSF scholarship programme to trains health workers. In Malawi, two thirds of job openings in the health sector are unfulfilled because of a lack of trained doctors, nurses, lab technicians, midwives, etc.
Preliminary findings in a study in Khayelitsha, South Africa, show that the cost per patient in conventional care is US$109. In an adherence club, the cost per patient us US$58. Further research on this is currently being analysed and will soon be ready for publication.
This is a key enabler: if the drugs are not ready to be picked up by the patients the systems cannot work. However, the situation is worrying and running out of stock is a common occurrence across southern Africa. MSF is currently monitoring the situation region-wide and is gathering and analysing data to identify the extent of the problem and its main bottlenecks. This is definitely an area where efforts need to be made.
All countries where MSF works in the Southern African Development Community (SADC) region as well as in the DRC regularly run short of some drugs. It is a systematic problem that cannot be easily fixed. If the clinics where MSF works run out of stock of certain drugs, we do our best to provide the patients with the drugs they need. However, a longer term solution is needed, and this must involve national and international actors.
Community supported models of care rely strongly on human resources to facilitate them. Those needs can be fulfilled by well trained, supervised and remunerated lay workers. These workers are less qualified than fully licensed health professionals and therefore their salaries are lower. They fulfill a key role and are instrumental in maintaining models of care, so they should it is beneficial in the long term to recognise them, train them and pay them. An additional benefit is that lay workers can be recruited directly from the local community and are therefore more attuned to patients’ needs.
Because of restrictions imposed by international donor organisations, however, countries are reticent to, and sometimes prevented from, increasing their wage bills for health and lay cadres. This is therefore an additional obstacle to the general rolling out of efficient community models of care. MSF calls for a relaxation of these rules for resource-poor countries most affected by HIV/Aids.
Access to quality clinical management is needed, with a clear referral mechanism to ensure a minimum follow-up of patients.
Monitoring and evaluation are essential parts of any community supported model to ensure accountability as well as a troubleshooting capacity when confronted with patient or group problems.
Community models of care are being progressively adopted throughout sub-Saharan Africa: adherence clubs are now officially endorsed by the South African government, as are CAGs in Mozambique. Funding is, however, needed to support the rolling out of these models of care and to finance community-based organisations who can take these models to the next level, by including these networks for advocacy purposes, linking them to income generating projects, etc.
For these models of care to be adopted by more countries, financing needs to be secured. One way of doing this is for countries to include them in the demands expressed to the Global Fund.