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Doing More by Doing Less: Decentralising HIV/AIDS care in rural Malawi
The Thyolo region of southern Malawi is a verdant area of tea estates. Bright green tea fields are cut through by reddish tracks, linking the many communities spread out in small villages. One of 28 districts in the country, it is also the area that is perhaps hardest hit by HIV/ AIDS, with 20% of people now testing positive for the HIV virus.
Despite this grim statistic, concerted efforts are being made to provide treatment in this district of 575,000 residents. The Malawian Ministry of Health (MOH) has a national program to address HIV/AIDS, there is currently a supply of drugs for patients, and MSF has been present in the Thyolo health district since 1997, helping to organise and provide effective care for those suffering from the disease.
Whilst have had many successes, establishing an efficient system of treatment delivery has been challenging, particularly given the rising number of people presenting themselves for treatment. HIV/AIDS education, testing, and successful treatment of opportunistic infections — conditions such as pneumonia that can claim the lives of people with HIV — have led to more people surviving the virus and there are now over 10,000 people without access to antiretroviral treatment (ART) who urgently need these life-prolonging drugs.
Accessing ART has not been easy for everyone here with an HIV+ test result, particularly with the initial national strategy of providing the drugs only at hospital-based clinics. The two hospitals in Thyolo district are now grossly insufficient to handle the thousands of people who need ART. For many, hospital-based care has also proven to be inconvenient and cumbersome. Long trips by foot to the hospital are unrealistic for people who aren’t feeling well, are expensive, and increase the risk of people discontinuing or not even initiating treatment. One patient living in Namileme, 25 kilometres from the nearest hospital, describes her experience:
“I left at 3:30 am on foot to Thyolo hospital to try to get antiretroviral medicine (ARVs), arriving at 9:30 am after four hours of hard walking. I waited in the group counselling room until 12: 00 pm and as I was very hungry and thirsty, left to the market to find something small to eat. When I returned, I was told the session was already over and I must return one week later. I now had to walk back home for another four hours without anything! Now I must walk back twice to Thyolo hospital, once for a group counselling session and then again for an individual counselling session before I can get ARVs. The nurse says this is to make sure I will be committed to taking ARVs, but I already know very well that I really need the ARVs and I am ready to take the medicines. It’s just so hard to get them.”
Photo © Julie Rémy
The usual process for obtaining antiretrovirals involves educational group counselling, followed by a one-week period so patients can consider making the commitment to treatment. Patients then return for individual counselling to understand how to take their ARVs properly. With such activities based at the hospitals, many people lose valuable hours they need to earn a living. On children’s clinic days, both mothers and children were exhausted upon arrival, practically falling asleep during counselling sessions! Motorised transportation is a quicker way to get to the hospitals, but costs are prohibitive for most, and during the heavy rainy season, transportation is also difficult as the dirt tracks turn to mud, often doubling travelling time or stopping service altogether.
When less is more
Having set a goal of providing ART to 10,000 people by the end of 2007, it became clear we needed a new approach. Our motto became “do more by doing less.” We needed to get drugs to many more people before their disease progressed to the point where they required more intensive medical care. We also needed a faster, less cumbersome and more patient friendly system.
Offering patient-centerd care
Our solution was to decentralise antiretroviral treatment, moving follow-up for stabilised patients on ART out of the hospitals and into nine local heath centers.
To maintain quality care, we developed criteria to define eligible patients and to identify the necessary characteristics for the selection of health centers. All staff who would be providing ART were also required to undergo training. These workers are supported by a mobile MSF team that travels to the health centers for supervision of treatment and counselling and dispensing ARV drugs. The health center teams continue the regular follow-up activities with continuous support from MSF.
This approach is helping to “demedicalise” HIV, empowering individuals and community members to be more involved in caring for those who have the virus. Communities are embracing this wholeheartedly, developing networks that engage in a range of supportive and innovative activities, such as checking in with peers at community meetings to make sure pills are being taken properly, and documenting life-affirming “before and after” photographs of people on treatment and living with HIV, which helps to reduce the stigma of the disease.
Today there are over 2000 people who have formed an association linked to the National Association of People Living with AIDS (NAPWA). Members are identifying ways they can help each other, undertaking projects such as organising vegetable, maize and fish farms to help feed people who are poor and unwell, and creating vocational training and income generation activities for HIV/AIDS orphans. This community involvement has been a positive force in our efforts at decentralisation.
A dearth of human resources
The numbers show that decentralisation is working — in one village alone we rapidly went from 20 to 150 patients on ART. But this new approach also comes with its own challenges, the most serious impediment being the lack of adequate and well-trained medical personnel. As in many other African countries, there is a chronic shortage of human resources here. Malawi graduated only 16 new doctors in 2005, and only one remains in the country. The government is permitting us to train medical assistants to provide ART at the health center level because there simply are not enough medical doctors or clinical officers to do so.
The pre-existing health center staff who are now involved in decentralised HIV activities are understandably feeling overstretched. HIV care is an added activity when they have many other responsibilities and administration duties. Other priorities — primary healthcare, vaccination programs, training workshops or providing relief for colleagues on annual leave — compete with HIV care and sometimes result in health center clinics not opening when they are supposed to. Absenteeism amongst medical staff is also a problem and can be attributed, in part, to low salaries. Although we have topped-up health staff salaries as a compensation for the increased workload, there is a limit to how much work one can do in one day. The lack of human resources is the most crucial obstacle to our decentralisation effort.
These difficulties are compounded by a poor health infrastructure. Operating ART clinics and general outpatient consultation simultaneously in the same room with a lot of staff and patient movement can compromise confidentiality, and some patients have complained about sitting with other patients from the same areas in their health center. We have tried to put up partitions to split rooms in two, but this does not always work because rooms are small to begin with. We now need to refurbish and rehabilitate some of the nine public health centers and in some cases, build extensions to accommodate clinic rooms. For now, we are simply doing the best we can with what we have.
Simplified treatments are key
Photo © Julie Rémy
As we now begin to initiate treatment at local sites, simplified treatments will be the backbone of successful decentralisation. It is the most practical response in the face of human resource shortages, and gives patients and caregivers as much control as possible for their care. Antiretroviral drugs must be effective and of acceptable international standard, easy to administer with a light pill burden (twice a day, triple drug combination), and child friendly for young patients — easily breakable, for example. In this resource-poor setting, drugs requiring no refrigeration are needed, as well as a schedule of drug intake that has no relation to food.
Other avenues exist for simplification. In Malawi, laboratory services to do a CD4 count (an index of immune system function) are a rare commodity and are usually not available in decentralised sites. We have found that with treatment provided far away from labs, blood specimens sometimes “spoil” before they can get to the lab to be analysed. Sometimes blood must be collected twice for a single analysis.
Though a baseline CD4 count is normally required as a pre-condition to start antiretroviral treatment, most patients we see are in advanced stages of the illness (WHO stages III & IV) and exhibit clinical symptoms that can lead to a decision to initiate ART without a blood analysis. In this environment, a thorough medical history and physical examination are a reliable way to select patients needing ARV treatment.
Reaching more patients, saving more lives
Scaling up ART to treat more people is a challenge, especially as the caseload increases. Decentralisation is not an easy process and it is not a cheap venture to provide patients with treatment. Research and development into paediatric diagnostic tools and drugs, simplified treatment protocols, and affordable secondline medications for those who need to change drugs will really help us leap forward. But despite our limitations and multiple constraints on resources, this is proving to be a good approach for getting treatment into the hands of more people who, quite literally, will not live without it. Our staff sees a visible difference in the health and vibrancy of the patients we treat, as a result of being able to access the care they need. From one of our patients at a decentralised site in Milongwe:
“I have spent a lot of money trying to access ARVs at Thyolo but I did not succeed. The first two weeks of taking ARVs are wonderful. I felt the difference. I actually can feel life coming back.”
To participate in decentralisation in Thyolo, patients must: