In Senegal, HIV remains largely taboo, which has a direct impact on people who are carriers, and particularly on seniors.
In Africa, thanks to the effectiveness of antiretroviral (ARV) treatments which have been generalized since the 2000s, more and more people are aging with HIV. It is estimated that the number of people living with HIV over the age of 50 is expected to triple within 10 years, and reach 6 to 10 million in sub-Saharan Africa. They experience the universal physiological effects of aging, combined with those of long-term drug treatment and viral infection. Aging with HIV in Africa is becoming an increasingly frequent experience – somatic and social, individual and collective.
Senegal was the first country in French-speaking Africa to have made antiretrovirals (ARVs) available since 1998. In 2022, people over the age of 50 living with HIV (PLWHIV) will represent more than a third of the 31 people treated. Some have been there for over 637 years.
How do these people and their loved ones experience aging with HIV? How does society manage their health? An anthropological study “Old age and HIV” is currently underway in Dakar and Yaoundé (Cameroon) with people aged over 70 living with HIV, their relatives and caregivers to analyze the experience and perceptions of aging with HIV. The first results of the study in Dakar are presented here.
Living with HIV for the long term
"We live with it, it's no longer a problem for us, we got used to it, we almost forget that we are sick," says Aminata, aged 70, who has been receiving antiretroviral treatment for 21 years (every first names are fictitious).
In the 2000s, taking HIV treatment was very restrictive. The number of tablets was high – up to 20 tablets a day – and some treatments had distressing side effects. Twenty years later, these treatments, made free, have been simplified and are often limited to taking a single tablet daily. Generally screened when they were in serious condition, these people have regained health and “normal” life; some call themselves “survivors”. They demonstrate very good adherence to care and ARV treatment.
But with age, they are faced with various age-related pathologies that occur earlier than in people not infected with HIV. The most common are high blood pressure, diabetes and their complications (heart disease, eye disease, stroke, etc.). These diseases complicate their medical follow-up and force them to attend various health facilities, in addition to their six-monthly visit for HIV. . Some APHAs testify to difficulties in following treatments for these other diseases which they consider to be less of a priority, especially since the drugs are often expensive.
Secrecy, silence, sharing
At the time of diagnosis, people sometimes confided in a few relatives: the spouse, the person who accompanied them to the consultations or who financed the care. Subsequently, few have revealed it to other people.
In general, people consider that “HIV is a disease that should not be disclosed”, because “this disease is not pretty”. The fear of a moral judgment on the circumstances of the contamination remains the main reason for maintaining secrecy. In 2022, HIV remains a stigmatizing disease.
Older women living with HIV are often widowed because their spouse died of HIV and because of the age difference related to the context of polygamy. They experience pressure to remarry from family and society, but few of them agree to remarry, for fear that their new spouse will disclose their illness.
The children of APHAs are also poorly informed, even if they are adults. “I live as if I didn't have this disease, I keep it to myself, even to my children, I didn't say anything” says Ibrahima, aged 72; others put up with a form of unsaid: “I have never discussed the disease with my children; they know because in 2000 it was my eldest daughter who accompanied me to the hospital, but I never faced them to talk about it,” explains Ousseynou, 84, who has been on ARVs for 22 years. This reluctance is increased in people screened at an advanced age, because of the taboo on the sexuality of the elderly.
However, the occurrence of functional disabilities (blindness, difficulty moving, etc.) requiring assistance with daily activities (taking medication or traveling to consultations) makes it necessary to review these choices. At best, the announcement to one of the children clarifies something unsaid or arouses concern; but sometimes it revives old conflicts and accusations of a cover-up.
Economic downgrading and precariousness
With advancing age, the cessation of all professional activities results for the majority of elderly people in a major reduction in their economic resources. In Senegal, only 24% of people over the age of 60 have a retirement pension, which is often modest, the minimum being €53 per month. Through reversion schemes, widows receive even lower pensions, especially in cases of partition linked to polygamy.
People who had a professional activity in the informal sector, and who no longer have an income, note with concern the erosion of their economic capital. Some find themselves forced to successive moves which gradually push them towards the urban periphery to find less expensive rents.
People with HIV try to work as long as their physical condition allows, in order to postpone the moment when they will no longer have economic autonomy. This loss of autonomy results for all of them in economic downgrading and in the exacerbation of precarious and dependent situations which have a direct impact on their physical and psychological health.
At the same time, their healthcare costs are increasing. Indeed, in Senegal, if ARV drugs and certain biological examinations have been free since 2003, part of the costs of care related to HIV and those of other diseases are borne by the patients. However, half of APHAs have at least one comorbidity that requires regular treatment. A study carried out in 2021 in Dakar Estimates between 34 and 40 € the rest to be paid for a consultation for elderly patients with high blood pressure or diabetes, to which are added the costs of transport to get to the care facilities. While the social protection system provided for the over 60s – the Map Sesame – works poorly, these health expenses are often a real headache for APHAs and their families.
The lack of resources places the elderly, and in particular APLHIV, in a situation of economic dependence on their loved ones. The aid from which they can benefit depends on the nature and quality of the ties, a form of inheritance of family relations throughout their lives.
The people most often solicited are the children, the uterine brothers and sisters, then the indirect descendants (nephews and nieces); less often, old friendships or more distant wealthy relatives; more rarely still, the neighborhood. APHAs sometimes deploy a whole strategy to avoid the shame of having to beg (the suture) and do not ask relatives too often at the risk of “tiring” them.
"I live with the help of people and divine grace", recognizes Habib, 84, treated for 20 years, who specifies that it is his neighbors who finance the trip to go to the hospital (2 €). The code of honor is often mentioned: “My son manages life in the house: if he gives me, I will take, but my dignity does not allow me to ask him. »
In Senegal, intergenerational cohabitation is frequent, with the average household size being ten people. This situation can promote mutual aid for the benefit of the elderly. But the difficulties of access to employment often lead to it being the elderly with a retirement pension who maintain the household. They must then choose between family expenses and those concerning their medical expenses, often to the detriment of their health.
A “dignified” entry into the social roles of old age with HIV
Fortunately, not all APHAs live in dramatic situations. Our study has made it possible to identify the conditions favoring a “dignified” entry, for people living with HIV, into the social roles of old age.
Fatou, 74, widow, has been on ARV treatment since 2006; she lives with her two sons, daughters-in-law and five school-going grandchildren. Only his eldest son is informed of his illness. She says she is living a happy old age. Her children take care of her and she takes care of her grandchildren: "I don't do anything except look after my grandchildren who keep me company, I am the 'yaay' (mother)".
In the current context of economic dependence of most APLHIV, these social roles are made possible when their children are socially integrated, through employment and stable income. They can then share the financial support of their parents; in return, they can get involved in their role within the family or the community.
In the absence of family support, it is the collective responsibility to ensure a dignified life for APHAs. Associations of people living with HIV are beginning to mobilize in favor of their elders. More broadly, groups like the National Council of Elders of Senegal militate for a better functioning of the Sesame Plan and the creation of a minimum old age for the poor. In Senegal, people over 60 represent only 6% of the population. In a country where the old age is valued, taking care of the elderly should be one of the cardinal values of a cohesive society, just as it should be in the rest of the world.
Project “Old age and HIV in Cameroon and Senegal, anthropology of aging and disease” is financed by Sidaction-Ensemble Contre le Sida. The principal investigators are in Cameroon: Laura Ciaffi, Marie-José Essi, Antoine Socpa; in Senegal: Gabrièle Laborde-Balen, Khoudia Sow, Bernard Taverne; in Senegal, the surveys were carried out by Seynabou Diop, Catherine Fall and Marcel Ndiana Ndiaye.
Gabriele Laborde-Balen, Anthropologist, Regional Center for Research and Training in Clinical Management of Fann (CRCF, Dakar), Research Institute for Development (IRD); Bernard Tavern, Anthropologist, physician, Research Institute for Development (IRD)and Khoudia Sow, Researcher in anthropology of health (CRCF) / TransVIHMI, Research Institute for Development (IRD)