A woman in her forties who is living with HIV says she was denied services at a public healthcare facility because she didn’t have a transfer letter, resulting in her treatment being interrupted. She says she also developed mental health problems. (Spotlight knows the identity of the woman, but is withholding it since she does not wish her HIV status to be made public.) 

Initially, she says she was taking her medication at Gateway Clinic in Mthatha, but after developing mental health problems her family took her to Gqeberha. She says that she was turned away at the Motherwell NU8 Clinic and the Motherwell Community Health Centre (CHC) for not having a transfer letter. As a result, she says her condition became unbearable. She says she also fell ill with tuberculosis.

It was only when she sought treatment at KwaZakhele CHC that she says she received the help she needed. 

“My condition was becoming worse as I was not eating and started to develop TB symptoms. My brother recommended KwaZakhele CHC, which I had to spend R40 on taxi fare to and from KwaZakhele.” There they gave her ARVs and she was put on TB treatment. “What I was subjected to in Motherwell is equal to negligence and how the department handling the issue of transferred letters is disappointing,” she says. 

She is not alone.

‘Nobody should be denied treatment’

Community-led clinic monitoring project Ritshidze says in its latest report on the state of health in the Eastern Cape that there are still patients living with HIV in the province who, when they relocate, are being shouted at and refused life-saving ARVs because they don’t have a transfer letter. 

According to Shelly Mabandla, manager of HIV and Aids and TB programmes in the Buffalo City District, it is always necessary to provide a transfer letter for the continuation of a patient’s treatment and for the distribution of the correct medication to the patient. She says it helps that transfer letters are now stored in an electronic system. “However, if clients don’t have a transfer letter, we have to provide them with treatment as if they were new patients. Nobody should stop taking treatment or be denied treatment in our facilities. If a client is turned away, he or she needs to report this to the department or our stakeholders,” she says.

Being denied health services is one of 10 key issues highlighted in the third edition of Ritshidze’s report on healthcare services in the Eastern Cape. The report was launched in two districts – Braelyn in Buffalo City on 19 September and Ikwezi in the OR Tambo District on 21 September. Monitoring for the report was conducted at 46 facilities and 2,514 public healthcare users were interviewed. Just more than half of the people surveyed are living with HIV.

According to the report, 294 people had been denied services at various facilities because they did not have an identity document. “Members of key populations we interviewed had also been denied services, including 4% of gay, bisexual and other men who have sex with men, 20% of people who use drugs, 25% of sex workers and 21% of transgender people,” the report states.

Expanding CCMDD

Other issues highlighted in the report include challenges people experienced in collecting ARVs at pick-up points either at the facility or in the community. The Central Chronic Medicines Dispensing and Distribution (CCMDD) programme is meant to reduce the burden on facilities and make it quicker and easier for people living with HIV to collect their medication.

Mkhululi Ndamase, spokesperson for Eastern Cape health MEC Nomakhosazana Meth, tells Spotlight that the department employs different tactics to reduce waiting times at facilities. One of those is the CCMDD programme.

Despite the ongoing staffing challenges, waiting times in facilities according to Ritshidze, have been reduced from 3:59 hours last year to an average of 3:14 hours this year. (Photo: Rian Horn / Ritshidze / Spotlight)

“Through the CCMDD programme, patients pick up their chronic medication through a fast lane at our facilities or at any of the 234 non-health facilities such as private pharmacies, general practitioners or churches in the province. At the end of the previous financial year there were 309,551 patients in the CCMDD programme. The department [wants] to increase the number of pick-up points this current financial year and add a further 48,000 patients onto the CCMDD programme,” Ndamase says. 

Yet, despite the benefits for the health system and people living with HIV, more than half of people living with HIV (59%) said they had never been offered one of these options, and almost half (49%) wish they could collect their ARVs closer to home, according to the Ritshidze report. 

“Of those using facility pick-up points, 70% must still collect files, take vitals and see a clinician before getting their parcel, making clinic visits drag on for hours,” reads the report.

The report also shows that there was an increase in the number of people living with HIV who received three- to six-month medicine refills. “While this is a welcome improvement, compared to 71% in Mpumalanga, the Eastern Cape is still lagging behind (with 46%),” the report reads.

Despite the benefits for the health system and people living with HIV, more than half of people living with HIV (59%) said they had never been offered one of these options, and almost half (49%) wish they could collect their ARVs closer to home. (Photo: Rian Horn / Ritshidze / Spotlight)

Among the 1,386 people living with HIV surveyed, 94% report having received a viral load test in the past year and only 80% (of the total) reported that they knew their viral load. “This year, 87% reported they understood that having an undetectable viral load means treatment is working well, and 85% understood that having an undetectable viral load means a person cannot transmit HIV,” the report reads.

As with most Ritshidze reports, staff shortages were again flagged as a major concern. Only 13% of facilities reported there were enough staff – a slight worsening from 14% last year. While up from 21% last year, this year, of 2,507 public healthcare users, only 32% said there were always enough staff to meet the needs of public healthcare users. Despite the ongoing staffing challenges, waiting times in facilities have been reduced from 3:59 hours last year to an average of 3:14 hours this year, according to the report.

Many healthcare users interviewed, however, complain about long waiting times. Most of them – 63% – blamed staff shortages and 18% blamed disorganised filing systems.

Most healthcare users interviewed – 63% – blamed the long waiting times on staff shortages and 18% blamed disorganised filing systems. (Photo: Rian Horn / Ritshidze / Spotlight)

Recommendations and frustrations

Among Ritshidze’s recommendations this year and in previous reports have been for the Department of Health to ensure that their staff treat people in a dignified and friendly manner, to investigate any reports of poor attitudes raised by Ritshidze, and to take disciplinary action where appropriate. They also recommend that staff are made aware that transfer letters are not required for ARV continuation or to restart treatment. “Reports where treatment is delayed due to the requirement of a transfer letter should be urgently investigated, and disciplinary action should be taken where appropriate,” the report states.

Read more in Daily Maverick: Ritshidze report shines light on barriers to health services faced by vulnerable populations

Read more in Daily Maverick: Free State bottom of the list when it comes to multimonth dispensing of ARVs, survey finds

Anele Yawa, secretary-general of the Treatment Action Campaign (TAC), which is part of Ritshidze, says he is frustrated and disappointed by how the healthcare system is failing its citizens.

“Our country has eight million people living with HIV, of whom 5.8 million are on treatment, but many of those 5.8 million people choose to quit treatment for personal reasons. It seems no one cares about fixing the reasons they quit treatment,” says Yawa.

Sibongile Tshabalala (left) and Anele Yawa from the Treatment Action Campaign. (Photo: TAC / Twitter / Spotlight)

‘Encouraged by measurable improvements’

Mabandla, however, says the department acknowledged the recommendations and is encouraged by the measurable improvements in the Ritshidze report. “This shows our quality improvement initiatives are taking shape. There is nothing I can defend or deny, but as professionals, we need to provide a comprehensive enough service to our clients, regardless of what their explanations may be. In BCM (Buffalo City Metro), we have discussed these challenges and one of the actions we agreed upon was to educate the communities,” she says.

“Our team is investigating these complaints and we assess the facility when we investigate these allegations. These concerns are discussed during cluster meetings. Our staff must cease treating our clients unfairly because we are called to serve the nation. Despite infrastructure challenges, medication is always available in our facilities,” says Mabandla. DM

NOTE: A member of the TAC is quoted in this article. Spotlight is published by SECTION27 and the TAC, but is editorially independent, independence that the editors guard jealously. Spotlight is a member of the South African Press Council.

This article was published by Spotlight – health journalism in the public interest.