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Siyayinqoba Beat It! Episode 12 – ARV Roll-out

Through the experiences of the Siyayinqoba support group, Barbara Twala from Mpumalanga, and Caroline Songqushwa and Nozuko Smile from Queenstown, we heard about the problems and sometimes fatal delays experienced by people trying to get access to ARV treatment through government hospitals and clinics. Fatima Hassan from the Joint Civil Society ARV Monitoring Forum and Thami Mseleku, the Director General of the Department of Health, also discussed these issues in the Siyayinqoba studio.

Jason Wessenaar: {Sesotho} [Hello and welcome to Siyayinqoba Beat It! support group.] My name is Jason. In the Siyayinqoba support group we all living positively. Each week we get together to talk about issues that affect our lives with HIV. uSiyayinqoba nguhlelo lwakho lokhuphila langcono ne HIV. Uma uphila negciwane le HIV. {isiZulu} [Siyayinqoba is your guide to better living with HIV. If you are living with HIV] or you have a partner, a family member or a friend who is HIV positive this programme is for you. This week we are talking about the state of antiretroviral roll-out in South Africa. In 2003 the government made a commitment to making antiretroviral medication available in the state hospitals and clinics. It is estimated that around 500 000 people are in need of treatment, but only about 50000 people are accessing the treatment in the public sector. Getting access to treatment is your right. Joining us in the group today is Barbara Twala, a young woman from Mpumalanga who is on the awaiting list for treatment. She was keen to come to the show to share with us the plight of people on the waiting list and for those who do not know that they are supposed to be on the waiting list. Welcome Barbara.

ARV waiting lists
Queenstown, Eastern Cape

Narrator: U Beat It! ukhulume no Caroline Songqushwa wase Queenstown. UCarloline ushanele ngushana wakhe ngesikhathi ukhuwaiting list yama ARVs. {isiZulu} [Beat It! spoke to Caroline Songqushwa from Queenstown. Caroline’s niece died while on the waiting list for ARVs.]

Caroline Songqushwa: Ingama lami ndingu Caroline Songwqushwa, Ndilapha ndizalwele apha eQueenstown. Ipha bendizo wonga umntana wakha sisi wam’ uNombulelo, usisi wam’ ubhubhe ngo April zakha 15 kulonyaka. Abe abhumbile usisi wami ndishiyekhe no Nombulelo umtana wakha sisi, ifirst born yakha sisi wami oHIV positive. ARV bekafanele ukuba uzifumane ngo March, kodwa azange ukube nomuntu onemonde bebangamuhambeli aselapha edlini agula. Bendisokolo naye khemna apha edlini, kungekho into iyityayo, kungekho ubisi, nalephapha abayifumanayo bekangayifumani. Besekuzinyanga izine angayifumani leyopapa leyo. Ngenye imini ndahamba naye mna, bathi nxa ndithetha ndithi ndiyamuthethelela mna bathi uyakwazi ukuzithethela, ndaphuma mna ndamushiya. Most of the time bakaziyela yena ekliniki. Until ke angakwaxzi ukuhamba wahlala. Abazange bayi treater leyento bekangava izidlebeni, enizilonda emlonyeni, abazange bamutreater lezo zinto lezo. Goba bakaya nqco, Kuthwa igqirha uzafikanini, angafumani ugqirha. Abuye andixelele athi, ukube ndayazile ukuba ndihambele mahala,ngabe andiyanga andisakwazi ukuhamba amadolo wami abuhlungu asho afike alale. Ngoku uNombulelo wagula ke ngomgqibelo kusasa ndaze ndamubizela i- ambulance ndamusa eFrontier hospital. Bendihamba ke ndiyo mujonga apha eFrontier hospital kwabonakala ukuthi ukugula kuyanyuka kuye. Wazeke wanfishiya ngomhla kasevenkulenyanga. Ngoba mina besendinethemba ngedlela bendimubona ngakhona ebefit, esitya, engalahli ukutya, endibona ukuthi ubengabe bekayifumene lento ngabe uthixo undibolekhile naye nangoku ngoba banityi abantu abaphila negciwane behamba bayaxathula kodwa yena angakhathelwelwanga uthixo undewamuthatha. Ndingathatha ukuba abanakhatholo ngabantu, abantu abanandaba ukuba abatntu bayaphila ngoba abanamusebenzi nabo so long barigth bona kwelinye icala abantu abagulayo nge HIV abanamusebenzi nabo kanti abantu abagula neHIV ngabantu nabo siyabathanda. {isiZulu} [My name is Caroline Songqushwa. I was born here in eKhomane, Queenstown. I came here to look after my sister, who died on the 15^th of April this year. She left me her first born Nombulelo, who is HIV positive. She was supposed to start ARVs in March but no-one had patience at the clinic and there were no home visits. It was difficult because there was nothing for her to eat, the porridge that she used to get from the clinic was finished already. Once I accompanied her to the clinic but when I tried to talk, they said that she could speak for herself. So most of the time she went by herself to the clinic until she could no longer walk, then she stopped going. She couldn’t hear very well and she had sores in her mouth, but that was never treated, even though she went to the clinic often. She would come home and say: “If I knew I would return empty handed I wouldn’t have gone. “I can’t walk, my knees hurt” and then she would go to bed. Nombulelo got sick one Saturday morning. I phoned for an ambulance to take her to Frontier Hospital. I visited her regularly at the hospital but her condition deteriorated. She died on Thursday the 7^th of July. It hurts because I had hope she was regaining her strength, she was eating. If only she had gotten the medicines, she would still be alive. I see many people walking the streets living with HIV but because she wasn’t cared for, God took her away. I think the government doesn’t care if people are living or dying as long as things are looking bright on their side, but people with HIV are still human begins and we love them.]

Support group

Jason Wessenaar: The ARV roll out is here. Obviously; clearly there are lot’s of problems you know, especially having seen that insert. What were your experiences with starting ARVs especially people in the public sector.

Primrose Mathabatha: Nna ke tswa Limpopo {Sesotho} [I come from Limpopo.] The whole situation in Limpopo is quiet terrible, in a sense that Limpopo we are having six accredited sites, it’s one hospital per district and spacing in those district I mean the district hospital they are not accessible for the people who are living with HIV and AIDS and thus the person on the waiting list for a long time they are many. Most of them end up dying which is caused by lack of education, human resources and politics around the roll-out itself.

Lihle Dlamini: How long have you been on a waiting list and how often do you go for appointments at the hospital.

Barbara Twala: I make lots of appointments. Ngaqala ukuba kuwaiting list last year. Lapho kwakhu no doctor wasesibhedlela is a government doctor. So well iCD4 yami beyiphansi kakhulu weyithi 89. This year ngaqala kudoctor Mokhajane. Udoctor Mokhajane wathi iCD4 count yami izikhuphuka if I’m not stressed ngoba bengi stressed to much. Yokho iyehlile iCD4 count yami. {isiXhosa} [I have been on the waiting list since last year. There was a government doctor at that hospital. My CD4 count was very low, it was 89. This year I started with Dr Mokhajane. Dr Mokhajane said my CD4 count will go up if I’m not stressed because at that time I was under a lot of stress.]

Primrose Mathabatha: Since September last year I was on the waiting list in a public institution and for me its was like, then Primrose you have to wait and wait and wait and sometimes you can even die before you accesses them. Then for me it was I will rather sacrifice the finances that I have and go to a private practice and get treatment until my time comes at a public hospital. And know fortunately oh thank God, from this month is then I got treatment from the public hospital.

Jason Wessenaar: We’ll talk more about accessing ARVs in the public sector after this break.

Jason Wessenaar: {Sesotho} [Welcome back to Siyayinqoba Beat It! Support Group] – the programme for everyone infected and affected by HIV. Siyayinqoba went to Queenstown in the Eastern Cape were we met with Nozuko Smile. A young woman on the antiretrovirals list, let’s have a look.

Demanding ARVs

Queenstown, Eastern Cape

Nozuko Smile: Ingama lami ndingu Nozuko Smile. Ndihlala apha ekomani, ndazazi ukuba ndi-HIV positive ngo-2003 ngo November. Phaya eFrontier bandinikha ngelaxesha I treatment yeTB, ndaye ndaxelelwa ukuba andikwazi ukuzifumana iARVs, ngoku ngokuba ndisatya itreatment yeTB. Ndiye ndaye ndayigqiba itreatment yami ngo Febri, so ukukhaba into ithethekayo ukuba ndizazifumana nini na? Ngoba ndibaxelele so ndiyahleli kuyowu mulindo ndisabalindile. Macomrade, ndingu Nozuko wakaSmile apha kwaChris Hani, Ndibaxelele ukuba iARVs ezi ndiyazifuna ndiselungelwelweni ukuba ndizifunane and isizathu ukuba bandibekhe ku waiting list ixesha elinde kangaka andisazi. {isiXhosa} [My name is Nozuko Smile. I found out that I was HIV positive in November 2003. I was treated for TB at Frontier Hospital. They told me that I couldn’t get ARVs because I was still on TB treatment. I would be able to get ARVs when I had finished the TB treatment. I finished my TB treatment in February and I have still not been told when I can get ARVs. Comrades, my name is Nozuko Smile and I live here in Chris Hani. I want to get ARV treatment and I know that I have the right to get it. I don’t know why I have been on the waiting list for so long.]

Linda Mafu: We are here to say: “Begin to save our lives! It is our human right, it is in the Constitution.” Sizothi apha, I resources azingaka kutheni singabantu abayi 192 singafunani iARVs kulendawu. Sizothi apha kutheni apha abantu abayi 52 balinde iARVs. {isiXhosa} [We are here to say, with so many resources, why is it that there are only 192 people on ARVs at the hospital? We are here to ask why 52 people have died waiting for ARVs.]

Lebohang Mosia (CEO Frontier Hospital): We will not be able to actually respond to the issues which are actually contained here, the only thing that we can do is to say to you today is that we will forward the letter to the province okay.

Linda Mafu: Asiphumi apha singaxolanga. Ukuba ikho imanagement ufuneke andibene nayo hayi ndigunduka ngo eigth ibusukhu namhlanje akukhonto, so singahlala athathe ixesha lakhe tata take your time. {isiXhosa} [We are not going anywhere unsatisfied. If needs to consult with management, that’s no problem. I’m going home at 8pm tonight, so we can stay. He can take his time, so take your time.]

Narrator: Emva kwamaviki amabili iTreatment Action campaign yaphindela emva eFrointier Hospital ukuze bathole impendulo mayelano nesicelo sabo. {isiXhosa} [Two weeks later, the Treatment Action Campaign went back to Frontier Hospital for a response to their memorandum.]

Sizwe Kupelo (Spokesperson, Eastern Cape Department of Health): The accredited sites on the province; sixteen that are operating through out the province and now we have accredited ten more sites which means we are going to have twenty six sites and some of the sites that have just been accredited in the Chris Hani Municipality.

Nozuko Smile: Sister bendi qela ukubuza ukuba ndiqale nini ukutya itreatment? {isiXhosa} [Sister, when am I starting my treatment?]

Sister: Okay, kaloku Nozuko njengoba usazi njekalokhu ntombi wena sasithe kuwe ulutyaziswa yinto eyi one, awukhazi naye umuntu okusaphotayo, then kengoku ke cho isiza wena uzobalisa ipilisi uzawendwa sokengoku, asinasiqinisekho intoba uxelele bani na? {isiXhosa} [As you know, we told you that the reason for your delay is that you don’t have treatment supporter. Every time you’ve here for treatment, you’ve come alone. So we don’t have proof that you have disclosed to someone.]

Nozuko Smile: Ndicela ukubuza sister ukuba iseyichance yakhe ukuba ndize naye na ukwenzela azocela emsebenzini. {isiXhosa} [So it is still possible to ask her to come in with me one day?]

Sister: Ewe kaloku ntombi, eyona nto ekulibazisayo kalokhu yintoni, asikwazi ukuba udisclozile na? Nokuba awukadisclozi na asina s’qiniseko, if umama wakho angeza yonke into yakho, ngoba kaloku, asinangxaki yokuza kwakho etreatmentini. {isiXhosa} [Yes of course. This is what has been holding you up, because we didn’t know if you had disclosed your status or not. If your mother comes, everything will be fine. We’ll have no problem with you starting treatment.]

Young woman: Ukuqala kwami ukungena kulereadiness programme,zange bandixelele ukuba ndize ne support sami, into abayibuzayo ukubas ndinaso naisupport ekhaya ndathi ewe ndinaso umama wami. So kwangona bandixelelayo ngala mini ndiza apha bathi ndize nesupport sami so ndazanaso ke isupport sami, kwangona bandixelela ukuba ndizafumana iARVs, so yilento yokuba ndihleli ixesha ilinde bangandixeleli kwabo ukuba nduqubekeke ukuba ndize nesupport sami early, everytime ndizo thatha itreatment yeBatrim, azange bandixelele. {isiXhosa} [When I first joined the readiness program, I was not told to bring a treatment supporter. I was only asked if I had any support at home. I told them that I had support from my mother. They only told me the last time I was here that I need to bring a supporter. So I brought my treatment supporter and they said I could start taking ARVs. So that’s the reason why I have waited such a long time. It’s because they never told me. Every time I came to get my TB treatment, they never told me.]

Support group

Jason Wessenaar: Welcome back to the programme we also welcome Fatima Hassan a lawyer and a member of the Joint Civil Society ARV Monitoring Forum. Welcome Fatima. What is the demand in terms of ARVs and I think that is one thing we have been discussing then we have been discussing that people have to wait for a long time? What are the problems or challenges?

Fatima Hassan (Joint Civil Society ARV Monitoring forum): I think there are a few problems obviously in terms of the application of the roll out. First thing that we have to acknowledge is that our public sector programme in South Africa started few years to late. So we are already into an AIDS epidemic; lots of people were already sick, lot of people had very low CD4 count and to get them into the system quite quickly is obviously proving to be the biggest challenge. There is an overwhelming demand of treatment everywhere in the country, everywhere you go too, every health district you go too. Just having one treatment per site per health district in the country; it’s not enough. So the fact that the department takes credit for having set up one ARV site in health district, we will say well done but it’s not enough. Now there are two reasons, if we go back to why there is a long waiting list there is two main reasons for that, one requirement for a facility to start providing ARV is accreditation and what government did: there are about 25 requirements for accreditation before facility can be accredited and what we always said is a facility should start providing ARVs if it has few things in place, if it has a doctor, there is a nurse, if there is drugs it can get laboratory test done, you know if it has VCT available at the hospital so that your test, so that your status can be determined, can be given counselling. So accreditation has become this barrier to facilities being able to open up the doors and say: “Okay start providing.” Now if you are in a district there is only one or three of five facilities that can provide ARVs but there is a few others who can help out. But they haven’t been accredited the waiting list on these sites can be come long instead of spreading out the patients you only have a few sites that can look after them. The second major barrier is scaling up ARV treatment programme in South Africa that we found is the lack of human resources in South Africa. We simply do not have enough trained doctors, we do not have enough trained nurses, we don’t have enough trained pharmacists. Some of the facilities that we speak to in Gauteng they say if you just give me one administrative clerk one extra clerk I can increase patient’s lost by twenty patients per week.

Lihle Dlamini: You see many people dying everyday because there is a very long waiting list, do you perhaps have a number of people who are currently on treatment or perhaps will you highlight to us how many people are in desperate in need of treatment at present.

Fatima Hassan: We think at the end of June 2005, the number of patients were between 50 000 and 60 000 in a public sector; that means government hospitals. In terms of whether we are meeting targets very low, now why I say it’s too low, it’s because about a year and half ago government itself had said that there were about 500 000 to 700 000 people in this country who are already living with AIDS who are in need of treatment. So over time that figure must have increased but we only have 60 000 people in treatment, in government own plan, you talked about a plan were they have set the targets, they have said in the year of the start of the treatment programme right, so that was like last year we were suppose to have 53 000 patients on treatment and they did meet their target and now it’s the only second year of the programme and we are only sitting at 60 000.

Jason Wessenaar: We will talk more about accessing ARVs in the public sector after the break. Don’t go away.

Jason Wessenaar: Welcome back to the programme, we also extend a warm welcome to Mr Thami Mseleku, the Dirsctor General from the Department of Health. What are some of the problems, why are people waiting for such a long time and also what is the government doing to make sure that people do not die, when they get into ARVs, in some cases people die when they are supposed to get ARVs?

Thami Mseleku (Director General, Department of Health): Well you see there is the issue of ARV treatment, must be set in the context of the health system. Health system that has many challenges and therefore is actually grappling with those challenges and we have a health system for a long time has actually seen a situation for the vast majority of our people it has been of low quality and they are all sorts of things in the health system in terms of waiting.

Primrose Mathabatha: {Sesotho} [As an ordinary South Africa citizen, I need you to help me understand how government accredits hospitals] because I’m form the rural Limpopo and it takes forever to accredit sites in Limpopo.

Thami Mseleku: The process of accreditation is a very simple process, the delay is not in the process it’s in whether these hospitals do meet the criteria for the accreditation. What you might be asking is why our hospitals not getting that accreditation and it goes back to building our health system as a whole, because you can’t just say let’s accredit all the hospital and then you not able to deliver the quality that you actually suppose to deliver, in terms of caring for your citizens.

Busisiwe Maqungo: As a person who sees HIV as a crisis, as much abanye abantu manothi iHIV is not the only thing eyingxakhi kuproblems ze health system but ubamhlambe iHIV {isiXhosa} [as many people would say it’s not the only problem in the health system but HIV] is part of the whole thing and it’s the bigger part of the whole thing.]

Vuyani Jacobs: I think it should be part of life saving of 600 people dying of AIDS a day and I come from Aberdeen. They never saw antiretroviral drugs they think I’m the only person who can live for 13 years and that is problematic for me because I don’t want to be a hero, I do not want a lotto winner like playing lotto and then on Saturday your numbers come out; you have won.

Thami Mseleku: When you sit it’s maybe important as a mobilisation point but also as a point of ensuring that there is a focus on target, come with numbers like 200 000 treatment by that okay. But from a government point of view before you put that kind of figure you have actually assess what is in the realm of possibility. I’m saying that we must be able to take protective measures so that we finding ourselves dooming our nation in a particular direction, regardless of what ever pressure we have.

Jason Wessenaar: For somebody like Barbara who has been waiting what do we say to her. What does she do when she gets back home?

Thami Mseleku: Look, if sitting in a situation were Barbara says I have been sitting and waiting like many other people who are waiting, what we say to Barbara is the Department of Health in Mpumalanga if the wait is actually based on anyone’s negligence and then I will take responsibility that Barbara does not wait out of negligence.

Jason Wessenaar: Can we contact you.

Thami Mseleku: Yes out of negligence you can but if Barbara is waiting because of the challenges we talked about then I will actually say personally if I had another way accelerating and changing the health system tomorrow I will do it so that Barbara doesn’t wait, just like other people wait for various reasons but if it’s a negligence issue then I think we owe it to Barbara to actually respond immediately to say why are you neglecting Barbara’s rights cause you have to make sure that Barbara accesses those rights so if that is the issues; so anytime the door is open.

Jason Wessenaar: Siyabulela Barbara, nawe Mr Mseleku, nawe Mr Fatima the support group nawe mbukeli ekhaya. Lkokhuqala wonke umntu ohlole iHIV imuphumela yaba positive kumele acela ukuthi ihlolwe iCD4 count. Kunezibhedlela izikhipha amaARVs kuzozonke izifundo, cela abasemthola mphilo abasendaweni yakhini, bakuthumele lapho. Uma emva kolhuhlolwa iCD4 count yakho ingu 200 noma ingaphansi kumele uqale ukuphuza amaAnti-retrovirals ngaleso sikhathi, kumele ukwazi ukuthi uma uqala amaARVs kumele uwathathe ngesikhathi esifanayo zinsuku zonke futhi uzowathatha imphiloyakho yonke. Ukwazi ukuthi ukuqala amaARVs kumele ubonise unomuntu ozokusiza ukuthatha amapilisi wakho. Abodokotela bazokunikha I Bactrim, kumele uyenayo njolo bawuya for itreatment ukuze bakwazi ukuhlola uukuthi uwathatha ngokufanelo amapilisi wakho. {isiZulu} [Thanks to Barbara, Mr Mseleku, Fatima, the support group and the viewers at home. Everyone who has tested positive for HIV must ask for a CD4 cell count test. There are hospitals in every province that can give you ARVs, so ask your nearest clinic to transfer you there. After being tested, if your CD4 cell count is 200 or less, you have to start taking ARVs immediately. Once you start on ARVs, you must take them at the same time every day, for the rest of your life. When you start on ARVs, make sure you have someone to help you take your medication. The doctor may give you Bactrim, which you must take with on each visit so they can check that you are taking your medication properly.] We hope you enjoy the show and you are feeling the Siyayinqoba Spirit that together we can. If you have any questions comments or views about the show please contact us on the numbers below. Join us again next week in the Siyayinqoba support group, til then stay health and stay positive. Bye]

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