Imagine a 40-year old Ugandan farmer named Michael, who lives with his wife and three of his children in the 2 roomed house that he built himself from locally made brick and roofed with sheets of corrugated iron. At night, during the wet season he hears the wind stir. He lies awake watching the flashes of lightning and listening to the distant rumble of an approaching storm. By the time it arrives, with an apocalyptic thunderclap and torrents of rain hammering on the roof, the whole family is awake, wondering if the iron sheets will stay in place, and what the crops will look like in the morning.
Michael’s oldest son lives in Kampala, hawking fancy goods to drivers caught in the traffic jams, hoping to find a steady job that can bring some money into the family, while the other three children are still in school, walking several kilometres there and back every day. A few years ago, he lost a child in infancy to pneumonia and another to malaria; his wife has been lucky to survive the risky times of pregnancy and giving birth. He has his local health centre to thank for that, run by the local church Diocesan Health Co-ordinator, but these episodes of serious illness, and other times when he has had to seek medical help, have been expensive. He has also sought help from traditional healers from time to time – and their services are costly too.
In recent weeks the Village Health Team has begun to inform everyone about a new epidemic, one that outstrips even the ravages of TB, malaria and HIV that have ended the lives of many of Michael’s neighbours and family members over the last decades. The Community Health Volunteers are advising all adults to have their blood pressure and blood sugar levels checked. On Sunday, the priest tells the congregation there is a health team ready and waiting outside the church to offer these tests for free after the service. Michael feels healthy, but he and his wife listen to the advice of people they respect and decide to be checked. The results show that Michal has both conditions. The nurse tells him to come to the health centre next day because he will need more tests, and is likely to need medicines for the rest of his life. Neither the additional tests, nor the medicines are free; Michael will have to find the money to pay for these, and, besides, to eat a varied and healthy diet. He will never be cured. Next day he attends the health centre, even though he cannot really believe what the nurse told him because he is strong and can work all day on the land, and he has always been healthy. He is told to go to the hospital 15km away for blood tests, and then to come back to start medicines. When he leaves, Michael works out how much all this will cost. He thinks of the effect of this new expense on his ability to manage his family’s immediate needs. What will he do?
A survey carried out by the Ministry of Health and the World Health Organisation in 2014 found that more than 25% of adults in Uganda have high blood pressure, and 80% are undiagnosed and unaware of their condition. 1.4% have Type 2 diabetes – a much lower figure, but one that still means that an average primary health care centre should expect to care for 35 patients alongside the 600 with hypertension. Undiagnosed and untreated, these conditions lead to blindness, strokes, kidney failure and amputations. They are not diseases that only affect the better off sectors of the population in urban settings. Prevalence amongst the urban poor, and those in rural areas, are high too. We visited a rural referral hospital and learned that 9 people had been admitted with stroke (related to untreated high blood pressure) that week, and that 80% of the 760 people who regularly attend their diabetes clinic presented with late complications, mainly coma.
Michael’s story of community-level diagnosis of an asymptomatic patient describes a situation that does not yet exist in rural Uganda. During our recent trip to the country to learn more about its health care services for chronic diseases, we met a skilled and passionate physician in a Catholic Diocesan Hospital that provides excellent care for the patients who can reach it, and afford it. We found a general awareness in the Ministry of Health and amongst specialists in academic medical institutions that access to care for most patients will only be possible if it is provided not just in hospitals but by staff in primary health care clinics located in the hearts of the communities they serve. The problem is that no one has yet been able to work out how this can be done, and, even if it is, whether people like Michael and his family will be able – and willing – to afford it.
Meanwhile, Uganda spends a lamentably small chunk of its GDP on health care. It’s a country that has enjoyed more than two decades of stability, but is still emerging from years of tragedy. Corruption touches the daily lives of most of its people. Poverty is highly visible in the many informal housing settlements squeezed between handsome villas and modern offices in Kampala as well as in the eyes of the malnourished, feverish children and their mothers seeking help from their local health centres. Often the clinical staff of these health centres are not paid regularly, and they receive little or no education after their initial training. For years, funding from large international donors like the Gates Foundation and the Global Fund has targeted mother and child health care, malaria, HIV and TB. As a result, important advances in the management of these problems have saved many lives, but now, diabetes, hypertension and cardiovascular disease cause more premature deaths and disability than HIV, TB and malaria combined. Despite this situation, which is well-recognised and given prominence by the World Health Organisation, these common, chronic diseases still receive almost no donor funding.
Our visit was hosted by LifeNet, a faith-based NGO (that works with all denominations, Muslim groups and the government) to support health centres through long term clinical and managerial training and mentorship. As a result of this trip, a plan has emerged for our organisation to work with LifeNet to design and run a pilot project for chronic disease management at primary health centre level in a Catholic Diocese. We’re hoping to be able to test out an approach that will reduce the barriers to care faced by people like Michael and his family by raising community awareness and understanding, training, equipping and supporting staff to provide good, low cost, effective care at health centre level, and arranging referral to hospital only when necessary.
Documenting and sharing the methods and challenges of the project should allow other Districts of Uganda to learn from its failures and successes, eventually making an impact on the lives of many people, especially the poor, whose limited access to chronic disease care results in thousands of avoidable early deaths every year.