Chronic illness in sub Saharan Africa: who cares?
Affecting not only the elderly
Von Erika Vlieghe
Chronic illness is a common but very much neglected health problem in sub Saharan Africa. People suffer from longstanding pain and symptoms caused by ‘incurable’ conditions like cancer, heart disease, diabetes, kidney failure. In the last decade, the numerous AIDS patients have joined this group. Their main and common problem is a longstanding, progressively debilitating condition, which silently undermines their physical and mental health and weakens their socio-economic status.
Monday morning, a rural district hospital in Uganda. A ward round through Female Ward. A 40-year-old woman has been brought in with diabetic coma. She is actually recovering while receiving insulin, but how to continue the treatment at the village? Two women in their fifties are recovering from another exacerbation of cardiac failure. For one, it is already her third admission since last summer. They complain of painful ascites and their failure to perform the household tasks. In the same room, three women aged between 25 and 45 are admitted with extensive and very painful breast tumours. They are very embarrassed about the deformities and the smell. The nearest place offering specialist care for cancer patients and radiotherapy is at 400 km distance in a war-ridden area. In the next bed, an emaciated old lady has hardly been eating or drinking for the last 6 weeks because of an oesophageal tumour. In the afternoon, a 45-year-old women is found to have a locally spread tumour of the cervix. She thinks she cannot afford to go for radiotherapy, although the smelling vaginal discharge and the pain are really disturbing her. A young man is very uncomfortable with his legs swollen and knobbly because of Kaposi sarcoma. He does not know he has AIDS. He hopes he can go back to the kraal soon. In the evening, an old man arrives from a place 100 km away because of a painful hard swelling in his upper abdomen: a gross liver tumour.
Unfortunately, the needs of those chronically ill are not met by far in most existing health care services. If the illness has a treatable or stabilisable cause (e.g. diabetes, or some types and stages of cancer), often the treatment is not available, not maintained for a long period or not given in an adequate way. Thereby, little or no attention is given to the broader needs in chronic illness: follow-up, counselling, information and education, involvement of the relatives, social or material support, rehabilitation… It seems that in general, chronic illness does not fit in most of the existing services, as they are designed for acute and communicable diseases, for standardisable, short episode illnesses. In most programs and reports on health needs in sub Saharan Africa, chronic illness is not a priority, if an issue at all. There are several reasons for this lack of priority. Some are true, and difficult to resolve, but many arguments originate from misconceptions, myths and a reluctance to face changing health patterns in developing countries.
Most chronic diseases cannot be cured with a simple treatment: that is often exactly what makes them chronic, causing the body to degenerate slowly. If at all treatable, they might require complicated technology (renal dialysis, advanced cancer surgery, radiotherapy) or specific longstanding treatment (insulin, antiretroviral therapy) which is often very expensive or difficult to organise in areas with few resources. Moreover, longstanding treatment often requires specific tools and skills for follow-up. And at the end of the day, only a very small fraction of those patients can get rid of their disease; in most cases, the only option is slowing down the disease progress, the suppression of symptoms and the prevention of further complications. These ‘results’ are contrasting sharply with the fast and substantial recovery in the treatment of many acute illnesses, especially when the input of resources in both cases is taken into account: Chronic illness is said not to be ‘vulnerable’ to treat, and not cost effective. However, everything depends on the interpretation of ‘vulnerability’ or ‘effectiveness’. Painful cancers might often not be cured, but can be highly vulnerable for adequate pain control. This act alone might be very effective to improve the patient’s quality of life, which reflects itself not only in the better physical and mental state of the patient but also of his carers: the impact of chronic illness on the relatives should not be underestimated.
Unfortunately, nowadays effectiveness of a medical action is measured only in quantity units such as life years. Even the recently introduced QALY’s (Quality Adjusted Life Years) are emphasising primarily on quantity of life. Quality of life seems to be a much less popular goal for planners. Thereby it needs to be mentioned that all these measuring tools have been developed in the Western world, and therefore maybe not so relevant for e.g. sub Saharan Africa.
It is often stated that chronic, degenerative diseases are so rare in developing countries that an investment in better services would not be justified. This seems to be a false impression, rather based on prejudices and incomplete data. In general, data on morbidity and mortality in Africa are hardly existing, and have a strong selection bias both in the population and illnesses studied. Diseases considered not relevant are often not notified. Thereby many patients never reach the health services. For example, the cumulative number of cancer patients at the Uganda National Cancer Register since 1960 is 11313, i.e. an average of 332 patients yearly (1). Yet at the National Cancer Institute only, more than four times as many patients are seen in a year (2) - and those are the few who make it to the capital.
In the last decades the emergence of HIV and the demographic/epidemiological transition have strongly altered the traditional landscape of adult health. Chronic illness, whether from AIDS, cancer, diabetes, renal or cardiac disease has become one of the important causes of adults’ suffering and mortality. Even among very traditional people like the Karimojong, chronic non-communicable diseases account for 10% of adults’ hospital admissions and for 25% of their deaths (3), and these figures are much higher in urbanised and ‘developed’ areas.
Next, chronic illness regards mostly the health of adults and elderly people. Only recently this has become of interest for researchers and planners (4). It needs to be mentioned that often relatively young adults are affected. Data from a rural hospital in Karamoja, Uganda (5) show that the average age among patients with chronic cardiac failure is around 40, and of cancer patients around 50. One in three is even less than 35 years old. Obviously the AIDS-epidemic has strongly influenced this cancer-age-distribution. However, those data are hospital based hence strongly biased: many elderly with a chronic illness might die at home without any contact to the health services. The reasons can be the old person’s own beliefs or fear, but also reluctance of the relatives to help the person seek medical help. The well spread belief that the elderly in Africa are highly respected and well cared for is often a myth (6). Accurate data on the elderly’s health status are grossly lacking, but in view of the fast growth of Africa’s elderly, an increase in age-related conditions is expected.
Argumentations in the discussion on priorities for health budgets are mostly utilitaristic: curing children is most ‘cost-efficient’ as they have a longer life potential; young adults, the economically active, also ‘deserve’ some health-investments. Only recently, interest in care of the African elderly has grown due to their own role as a carer in the AIDS-epidemic. Yet it is deplorable that some groups in the population become only of interest when they seem to be useful in a direct economic context, denying their broader place and function since long in the social meshwork. Where broader principles of equity and humanity are not applied in the discussion, this type of rationing is poor and dangerous, even taken into account the limited budgets countries dispose of. When care for the frail, the destitute, the chronically ill, the disabled and the elderly is not on the political agenda, there will never be any budget, nor room for creative problem-solving of their needs.
Finally, treating chronic diseases can be demotivating and less rewarding hence the disinterest shown by many health professionals in developing countries. Lack of knowledge and expertise on this topic certainly adds to the impression that caring for the chronically ill is only ‘trying to fill a bottomless pit’, and therefore impossible and useless. This is exactly where initiatives can be taken.
There is a whole load of underused possibilities to improve the curative or palliative care for many chronically ill. In many settings with poor resources, it has proven possible to achieve pain and symptom control in cancer and AIDS patients, to control exacerbations of asthma and chronic heart failure, even to control diabetes. Obviously it is not sufficient to make available the drugs and equipment without training the health personnel in the global approach of the chronically ill patient. Pioneers in this translation of skills to the local circumstances and their transmission to the local health sector, are NGO’s such as Hospice Uganda (providing and teaching palliative care for cancer and AIDS patients), Mildmay International and Nsambya Home Based Care (providing specialist care for HIV patients). All are strong in combining up-to-date and evidence based treatment methods imbedded in ‘holistic care’: counselling, physical and mental rehabilitation, economical and peer support are available according to the needs of the patient.
Yet it is remarkable that all these initiatives are NGO-based and that the Uganda government has only recently started with a cautious commitment. Thus, many questions arise on the integration of the above-mentioned ‘global care’ in the public health sector, especially up-country. However small-scale and low-cost, this type of care requires a certain budget, expansion of staff and a different working attitude. Hopefully the improving relationship between the public and the NGO-sector in Uganda’s health care can contribute positively to the better management of the chronically ill people’s needs.
*Erika Vlieghe, Department of Public Health, Institute of Tropical Medicine, Antwerp, Belgium. The author is a medical doctor. In 1997-1998 she worked as a Medicus Mundi Belgium volunteer in Matany Hospital, a missionary district hospital in Karamoja, Northeast Uganda. Actually she is working as a junior research member at the department of Public Health of the Institute of Tropical Medicine in Antwerp. Her main area of interest is the organisation of health services for the chronically ill in poor resources settings.
1. Uganda National Cancer Register, data from 1960-1999 with exclusion of 1981-1983, 1985, 1987-1988.
2. Personal communication from Dr Jackson Orem, National Cancer Institute, Uganda.
3. Matany Hospital, Moroto District, Uganda. Data 1996-1999
4. For example: Feachem RGA, Kjellstrom T, Murray CJL, Over M, Phillips MA (eds.). The Health of Adults in the Developing World. Oxford and New York 1992: Oxford University Press for the World Bank
5. Matany Hospital, Moroto District, Uganda. Data 1996-1999
6. A more extensive discussion of this matter is given in: Geest van der S. The social and cultural basis of home care to elderly people in rural Ghana. Paper presented at the First International Conference of Anthropology and History of Health and Disease. Genoa, 29/5-2/6/96; and: Geest van der S. Between respect and reciprocity: managing old age in rural Ghana. Southern African Journal of Gerontology 1997 ; 6(2) : 20-25