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HIV patients in limbo after centre shut doors, some accessing ARVs illegally

By Afikile Lugunya - Dec 1, 2017
HIV patients in limbo after centre shut doors, some accessing ARVs illegally

As South Africans and the world marked World Aids Day on Friday, for several HIV-positive patients in Port Elizabeth, there is nothing to be optimistic about after the closure of the Emmanuel Haven Centre early this year. To date, many still cannot access their Antiretroviral drugs (ARV) while some have resorted to buying them from unscrupulous dealers.

Speaking to RNEWS, Masumpa Ramolahlei, who used to volunteer at the Motherwell-based centre before it was shut down - apparently due to safety concerns on the building, said that life has been tough for the patients he had worked with for several years. 

Established in 2000, the centre’s vision was to create an HIV-free Motherwell - the largest township in Port Elizabeth. However, over the years, it has grown to cater for HIV positive patients, who come from other various townships around Port Elizabeth.

Ramolahlei described how many of the patients refused to sign transfer letters that could have seen them be admitted at other clinics across the Bay as the patients had hoped their refusal would force the Eastern Cape Department of Health to keep the centre open while others thought there was no way the centre could close as it served thousands of patients.

He said that, unfortunately, when the Department went ahead and closed the centre, the patients, who refused the transfers, could no longer access their files, which had years of data on their medical history and the kinds of treatments they were taking. 

Ramolahlei said that a way around this would be for the former Emmanuel Haven patients to go to the clinics and pretend to be new patients so they can get new records - but with new treatments. However, he claimed that the clinics themselves do not the capacity to handle more HIV patients as they tend to only serve a certain number of patients per day and the rest are sent home without being assisted.

He claimed that no one bothers to ask if the ones that are sent back still have treatment or not.

Ramolahlei told RNEWS, that to this day, he feels he let the Emmanuel Haven patients down as they had so much faith in him that the centre will remain open although he did not have the power to keep it open. Some of the patients have also appealed to him to assist them in getting their files.

“They call and plead with me to help them get their treatments since I know other volunteers and they ask me to help organise files for them, so that they can be placed into other clinics.”

He also claimed that a number of patients that he had known for years while volunteering at the Haven have since died since its closure.

“I lost count of how many people have come to report to me about the deaths of people, who were patients at Emmanuel Haven because they don’t take their treatments anymore. There’s nothing I can do to help them, but my heart bleeds for them," he said.

"I dearly hope and wish for a miracle and for the Department of Health to have mercy and re-open the doors at the building - at least for people to get their files, if they are still there."

Ramolahlei said he has been going back and forth trying to assist patients, but he has reached a dead-end.

Getting treatments illegally

Qondiswa Ncilitha, who was taking her treatment since in 2003 at Emmanuel Haven, saidd after the clinic closed down, she has been getting her ARVs illegally so she can stay alive.

“At Emmanuel Haven Clinic, we were treated like humans unlike at government clinics, because they don’t care about us. It has been preached many times that noone can disclose our statuses without our consent, but at government clinics, they automatically do it for us. If I go to the clinic saying that I want to take my treatment, I will be taken to a space where everyone who is there can tell it is for HIV positive people. I never really liked government clinics,” Ncilitha said.

“The last time I took my treatment at a clinic is  when Emmanuel Haven was open and that was in April or May, I cannot remember, but I haven’t gone to a clinic ever since. I do have the treatments though, but I receive it illegally, and it is running out now so I’m still thinking what I’m going to next because I don’t even have a file."

According to her, she tried going to her clinic in Motherwell, but came back empty-handed because the clinic doesn’t have her file - all she had with her was a card with her name and address.

“I went to a clinic last week; they said that they couldn’t help me because they don’t know the treatment I was using,” she explained.

Noluthando Budaza, who was also a patient at the Haven, said that she was using a last box of her ARVs, when the box is finished, only God knows what will happen to her.

“I am at home still using the remaining treatment that I received from Emmanuel Haven in May. My treatment can end anytime because I’m using the last box this week, after it I really don’t know what I will do," she told RNEWS.

She said she was among those, who refused the transfers as she thought that the Haven would not be closed.

“There were over thousand patients there and I really thought that it was a joke that they were closing the place,” Budaza described.

Dangers of skipping HIV medication

According to a Port Elizabeth-based health practioner, Dr Mthembeni Tebelele, there are dangers in HIV patients skipping their treatments.

“The aim of taking ARVs in HIV positive people is to keep the virus suppressed and under constant check. This will the give a chance for the CD4 count to improve and protect the patient.

“If one defaults or interrupts medication. The Viral Load (number of viruses) goes up in blood reversing the scales to what things were before or even worse - opening up the patient to a myriad of opportunistic infections like various types of TB, Pneumonias, Skin issues, Candida etc. and eventually death," he told RNEWS.

“Another danger of treatment defaults or interruptions is drug resistance. The treatment may fail to work on resumption and HIV would then progress to AIDS.”

Eastern Cape Department of Health spokesperson, Sizwe Khuphelo, said that he won't be able to comment on the matter of the closure of the Emmanuel Haven and the current status of the patients, who refused to sign the transfers to other clinics and referred RNEWS to Noreen Botha, the District Health Manager.

However, Botha also said that she cannot comment on the matter and would forward our questions to the Provincial office.