HIV-positive elders too often live with inadequate healthcare

KAMPALA, UGANDA — Mbowa Mosa, 42, struggles to provide for six children from two marriages.

Betty Bigambo*, 52, lives with her mother who is unaware of her secret.

Fatuma Nabalence, 62, cares for her seven grandchildren in a three-room house.

All three Ugandans are HIV-positive.

HIV (human immunodeficiency virus) is a virus that attacks the immune system. Left untreated, the immune system can be destroyed.

Sitting in her bedroom, Fatuma Nabalence sorts out her HIV medication she receives from Reach Out. (Amelia Herrick| The Media School)

Uganda has the youngest population in the world and therefore elders are too often overlooked, according to Kenneth Mwehonge, program officer of advocacy and networking for Coalition for Health Promotion and Social Development (HEPS).

“Much focus is on younger people,” Mwehonge said. “[The elderly have] not been a very big problem but they are a vulnerable population.”

According to Mwehonge, grandparents care for 70 percent of Uganda’s vulnerable and orphaned children.

The custom in Ugandan society is for elders to provide care for their grandchildren. It is a large economic and physical burden because there are so many vulnerable children and too

many parents have died in the last two decades, Mwehonge said.

Children from unplanned pregnancies and poorly established parents also become grandparents’ responsibility, according to Mwehonge.

Kenneth Mwehonge sits at HEPS, ready to leave work for the afternoon. (Bente Bouthier | The Media School)

Issues of health and employment, coupled with responsibility for grandchildren, leads to unsatisfactory care for both the children and elderly.

“The biggest issue now is malnutrition,” Mwehonge said. “It is very common among orphans and young children living with the elderly.”

Due to age and health, elders often find it difficult to participate in bread-winning activities. According to Mwehonge, most of the food accessed by elders is in their garden. Without proper nutritional variety, elders are left malnourished, as most can’t afford balanced meals.

Currently, there is no government support available to grandparents caring for their grandchildren.

“This further impoverishes them,” Frederick Bwire, chief executive officer for Uganda Reach the Aged Association (URAA), said. “It keeps the cycle of poverty on and on.”

Bwire notes that poverty in adults and elders is the largest single detriment in antiretroviral drug adherence. ARVs require sufficient nutrition if they are to be effective in suppressing viral load and maintaining good health.

ARVS are part of treatment to suppress the HIV virus and keeps it from progressing. Treatment also prevents spread of the virus.

“Elder people who are sick, they cannot buy drugs sufficient for treating diseases,” Bwire said. “They cannot have a good diet. They don’t have money to go to good medical facilities.”

Betty, 53, is an HIV-positive working adult supporting her mother. She finds it difficult to take ARVs consistently because her food is not always substantial enough for the medication.

Betty delivers school uniforms in Kampala.

Betty, 52, stands by a window in Reach Out. She receives her antiretroviral drugs for her HIV there every three months. She lives with her mother. “I do not tell my mother that I’m positive because I’m afraid she will treat me worse,” Betty said.
Betty’s identity is being concealed so she can avoid discrimination and harassment. (Bente Bouthier | The Media School)

(HIV-positive people) cannot take drugs when they are dealing with other issues. Over time, it overwhelms them and they forget to take their drugs, Betty said.

“The government needs to provide better service. Sick people are not well and they need food. They need to be helped with bigger issues,” Betty said.

“As Ugandans age, they struggle to find gainful employment, especially if they are HIV-positive,” Bwire said. “In addition, when someone is sick, they should have a good diet. When someone is poor, they cannot afford a good diet.”

Mbowa Musa’s greatest concern as he ages is sustainable employment. He is not consistently employed, but takes the work that comes his way. This is usually physical labor such as construction work.

Uganda’s minimum wage is set at six thousand Ugandan shillings per day (1.67 US dollars). This has not changed since 1984, according to

“Your children are dying of hunger, the landlord is waiting for his money, you work the jobs you can,” Musa said.

Mbowa Musa, 42, takes a call from a friend. He works construction when he can, but struggles to find employment because he doesn’t have the right connections. “It is all about who you know,” he said. (Bente Bouthier | The Media School)

Costs of living, school, and food makes saving money difficult, Musa said.

Because of economics and job displacement, some elders find themselves struggling for basic health care, Bwire said.

Musa is hopeful that his children will care for him as he ages, just as he has helped them.

He worries most about how employment will affect his drugs and how he will provide food for his children, Musa said.

“I do not worry about my long term health plans as an old man, because I do not see myself living so long,” Musa said.

The average life expectancy in Uganda is 58 years.

“We need social protection in this country because family support mechanisms have broken down,” Bwire said.

“I knew an HIV-positive woman, cared for by her child who beat her. When her other children found out, they took away. But she died shortly after,” Betty said.

Bwire also sees job migration leaving elders without a sufficient support system.

“Young energetic men who used stay to take care of elders, till the land for food, we have them in cities riding boda bodas (motor cycles used for taxi),” Mwehonge said. “Everyone is running for the city, leaving elderly in villages alone.”

Children of poorly established parents and unplanned pregnancies become the duty of grandparents, according to Mwehonge.

“Here we have elderly with no employment or income, then they have additional children to take care of, and are too often sick themselves,” Mwehonge said. “We are seeing this especially for malaria. It is one of the leading killer diseases but it has so much to do with poverty. I think if we are to eliminate some of these diseases we need more investment into the elderly taking care of children, but even the elderly themselves.”

Elderly are in poverty because of poor insurance programming by the government, said Mwehonge.

Fatuma Nabalence, 62, receives all her medical treatment from Reach Out, a Catholic NGO. The organization also helps with her grandchildren’s education fees. She is employed selling soda there.

Poor financing in health care makes positive eld
ers unlikely to seek medical aid, according to Mwehonge.

“There are stock outs (shortages or absences) of essential medicines at medical clinics,” Mwehonge said. “Positive elders think that if clinics do not have other important medication, they will not have ARVS and they do not want to use their energy to go.”

Gabriel Amori of the National Forum of People Living with HIV/AIDS Networks in Uganda (NAFOPHANU) calls for a more holistic approach to health care in Uganda.

People who test HIV-positive in clinics should also have a more comprehensive health check-up for related problems, rather than waiting for something to surface, he said.

There is currently a National Health Insurance Scheme in Parliament, but it is meeting resistance from the private sector, according to Mwehonge. It will especially affect the private sector because they would have to pay for anyone they employ, and not many do that right now.

Health care in Uganda is supposed to benefit everyone regardless of age, but this care is insufficient. Benefits owed to public servants are often hard to access because of corruption, Bwire said.

He said most people above 55 have issues accessing health care from companies because they are considered a risky population. They are considered risky due to increasing health issues that come with aging.

“Members of Parliament, who you’d expect to be doing well, receive their money in cash once they exceed 55 years,” said Bwire. “This forces [people] to pay for insurance expensively, making it even more difficult for those in poverty.”

Mwehonge said that efforts for elderly are sporadic and there is little policy in place given elder’s influence on the direction of HIV.

This is due to scanty data collected on elders receiving medical treatment, said Bwire.

“Until recently, when you went to receive medical treatment, you only had to mark minor or adult,” he said. “This meant we didn’t know what portion of elderly were seeking medical assistance.”

This can also affect the aid NGOs (Non Governmental Organizations) provide, according to Mwehonge.

“The issue of elderly response is informed by what data tells us,” Mwehonge said.

HEPS puts minimal focus on elders because of a lack of data. URAA is working on research-based advocacy to remedy this.

Nabalence, 62, a grandmother caring for seven children, lives in a house provided by Reach Out. Not all elders receive the consistent support Nabalence does.

The entrance to Reach Out, Mbuya, features a large religious icon. Mass is held just behind every morning. (Bente Bouthier | The Media School)

“The life expectancy is getting higher even for people living with HIV/AIDS,” he said. “With viral loads suppressed, they’re able to live a normal, longer life. It’s high time we began thinking of them.”

[* Betty Bigambo is not her real name. Her identity is being concealed so she can avoid discrimination and harassment.]