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Lack of ARVs increases hospice workload
Anso Thom - Health-e
2007-05-18

HIV-positive people living in Graaff-Reinet and surrounds are dying as they wait for the long-promised arrival of antiretrovirals, leaving hospice workers in the Eastern Cape town to care for the dying patients and the children they leave behind.

Already the Camdeboo Hospice in the small town has 92 registered orphans, all cared for by extended family, and they estimate that 120 people die every month in district, mostly  Aids-related.

According to the District Health Barometer (DHB) less than 40% of pregnant women attending antenatal clinics in the Cacadu district under which Graaff-Reinet falls were tested for HIV. One out of five who were tested were HIV positive.

Those few patients who have the money travel to Port Elizabeth, almost three hours away by road, to get ARVs.

Its been two years now that people have been promised anti-retrovirals, but nothing has happened, sighs Sister Gwen Clifford, a nurse at Camdeboo Hospice in Graaff-Reinet.

A building has been renovated behind the Midland Hospital and staff appointed. Prospective patients have also undergone rigorous assessment, however the drugs have not yet arrived.

The patients dont believe us anymore when we tell them the drugs are coming, says Clifford.

John (not his real name), hangs off the side of his hospital bed, his short dreadlocks almost touching the ground. Huge sores on his body, make lying flat extremely painful, but he is too weak to sit or stand. The stench in the bare, solitary room is overwhelming.

In his early twenties, the young man from Umasizakhe, was infected while working as a sex worker from the family shebeen. Clifford and her colleague, Sister Jeanette Hartney, shake their heads as they walk away from his room. It wont be long, they confirm.

In the womens general ward, a group of gogos, heads bowed have surrounded the bed of a young HIV-positive woman. The womans sunken, confused eyes move quickly between the old womens faces before she slowly closes her eyes, too exhausted to try and make sense of the confusing and noisy throng around her bed.

She is quite literally skin and bone a nightdress with big red flowers hangs like a sack on her thin frame which makes a slight bump under the white sheet.

I would rather that you take her now, wails a woman, who later introduces herself as the young patients mother.

Patients in the surrounding beds nod in agreement as the urgency in the womans voice increases. God, I am tired, she continues in a loud voice. My other two daughters are already lying in the Santa graveyard and Master I now ask you to also take this daughter. I fear nobody, I know God is the victor. Amen.

Clifford hugs the elderly woman who sobs in her arms then leans over the young woman in the bed and clutches her hands. Dont be scared, we are all here with you she tries to soothe the patient.

Clifford and Hartney agree that the social problems are the biggest drivers of the HIV epidemic and other diseases such as tuberculosis.

At hospice you give unconditional love, but you can tell someone that you are not behaving well, says Clifford, explaining that alcohol abuse is the biggest challenge facing their patients, many who are HIV positive and have TB.

This is a (social) grant town and you can forget about getting any sense out of people on the day they receive their pay, she sighs, referring to the fact that many patients use their grant money to buy alcohol rather than food.

Hartney, who has been working as a nurse in the area all her life, nods her head. The sad part is the alcohol, but we also need to understand that they are ill and know they are going to die. So sometimes they feel that the alcohol helps them to forget.

Clifford and Hartney believe the HIV epidemic is also driven by the high unemployment rate in the town. Many farmers have cut down on labourers opting to employ no more than three men to work the sprawling sheep farms.

Young people either travel to Cape Town in search of a better life, only to return disillusioned and often HIV infected. Others remain and become sex workers, mainly servicing the truckers who overnight in the town underway to Gauteng or the Garden Route.

Many parents send their children to Cape Town with stars in their eyes only to see them returning very ill and dying, says Clifford.

Rain has turned the dirt roads into mud and Clifford races through the streets of Umasizakhe trying to find a patient who is undergoing screening to start anti-retroviral treatment. Clifford has agreed to be his treatment buddy, but the man has still not returned from an outing to George and she is worried that he will be pushed to the back of the queue if he fails to pitch for his appointment at the HIV clinic.

On her way back to town Clifford is flagged down by a smiling young woman. Ah sista, I have been missing you, she says with a wide smile, leaning through the open bakkie window to hug Clifford.

Clifford dispenses ointment from the back of the bakkie, before hugging the woman and driving off with a wave.

She is HIV positive and lives with her boyfriend who is very demanding and she has to run errands for him all the time. One day it was 40 deg C and he sent her to the shop. When she got home she discovered her baby, who had been tied to her back, had died. It was really tough on all of us, Clifford says shaking her head.

Clifford and Hartney serve 182 patients in five towns Nieu Bethesda, Jansenville, Aberdeen, Kliplaats and Graaff-Reinet. Of these, 144 are HIV-positive and 35 have cancer.

Their jobs involves a lot of traveling and although they are officially hospice workers, the two nurses and their team of community workers, fulfill the roles of social worker, friend, foster parent, nurse, pharmacist, counselor, bereavement worker and educator.

John Harman, Methodist minister and chairperson of the Camdeboo hospice board, was part of the team which started the operation nine years ago not really knowing what they were letting themselves in for.

We just knew there was a massive need in our community and that something needed to be done, he smiles.

The hospices biggest challenge is raising enough funds to meet the growing need within the impoverished communities.

In the meantime, Clifford and Hartney bounce across rocky roads to reach the homes where the need is desperate.

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