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Siyayinqoba Beat It! Episode 26 -

VCT or routine testing?

In South Africa we have a policy of voluntary counselling and testing. However, many people die because they test too late. Their CD4 counts are very low, giving the ARVs less time to work effectively. In the past when treatment was not available, VCT was important to protect people from stigma, but since the roll-out of ARVs, many people are questioning whether VCT and written consent is the best policy for HIV prevention and treatment. We are joined by Justice Edwin Cameron who believes that VCT slows down the response to HIV and Mark Heywood, Director of the AIDS Law Project who believes that testing must remain voluntary and pre and post test counselling must remain.

Shalom Ncala: Molweni, siyani amukhela kuSiyayinqoba Beat It! support group. Igama lami ngingu Shalom Ncala. I viki ne viki siyahlangana ukuzo xoxisana ngezindaba ezithinta izimphilo zethu kusukhela kumi hlobo yemi shanguza esiyidlayo ingasakwazi ukulwisana ne HIV, ukuya emithini kuthwa iyalapha. Usiyayinqoba ngu hlelo lwakho lokhu phila kancono nge HIV.Uma uphila negciwane ke HIV, noma unomlingani, ilunga lomdeni noma umngani ophila negciwane leHIVi siyayinqoba he yakho. Kusiyayinqoba support group sonke siphila negciwane leHIV.Sanibonani nonke. Namhlanje qathanisi ukuhlolwa kwe HIV nokusinikhela kanye hlolwela iHIV njenge inqubo mgomo.Akesizwe ukuthi abantu bathini. {IsiZulu} [ Hello and welcome to the Siyayinqoba Beat It! support group. My name is Shalom Ncala. Each week, we get together to talk about issues that affect our lives, from ARV resistance, to curative claims. Siyayinqoba is your guide to better living with HIV. If you are living with HIV, or you have a partner, family member or a friend who’s living with HIV, Siyayinqoba is for you! In the Siyayinqoba support group, we are all living positively with HIV. Hello everybody and how are you today. Today we are talking about voluntary counselling and testing versus routine testing. Let’s see what people on the street have to say. ]

Question: Voluntary Counselling and Testing – Is it important that I am counselled before I test for HIV? Are there other procedures we can use to test for HIV in South Africa?

Shalom Ncala: eSouth Africa sinomuthetho wokuhlolela iHIV emva khokhuthi usinikhele wase uyalulwela. Kwodwa abantu abaningi bayashona ngoba bephuzile ukuhlolwa iHIV. Amasosha wabo womzimba asukhe asephansi kakhulu kwenza amaARVsangabi nesikhathi esi anele ekuqaleni, lapho amaARVs angakatholakali ukwenza ukuhlola ngokuzinikhela, nokuthola ivume kumuntu ozohlolwa bekubalulekhile ukuthi abantu bagwase. Selukhu kwabakhona amaARVs abantu abaningi bayazibuza ukuthi ukhuhlolwela iHIV ngokuzinikhezela ukunikheza ivume kungabe uhumthetho ukuwonawona nayini ekuvumbeni ukutheleleka nge HIV kuyelapha. Sivakashele uJustice Edwin Cameron umuntu owaziwa khakhulu emuningizimu Africa uphila ne gcciwane leHIV. uEdwin ukholwela ekutheni ukuhlolwa ngokhu zinekhela kwehlisa ukunakhekhela kweHIV futhi kuvimbela abantu baqale amaARVs. Kholunye uhlangoti uMark Heywooduyi Diector Law Project okhilwela ekhutheni ukuhlowa ufanale kube ngokuzinikhela futhi ukunikhela ngaphambi uzinikhela kumele kuhlale kunjalo. Ukuqala ikhulumo yethu ngizo thamda ukuqela uEdwin asicazele ukuhlola ngo nqube mgomo kubandakanyani nokhuthi kungani acabanga ukuthi kufanelekhile. Kodwa ngaphambi kwalokho makhe sebheke ke le insert ukuzikhumbuza yini ekhona ekwamanje ekuhlolewni ngokuzinekhezela. {IsiZulu} [In South Africa we have a policy of voluntary counselling and testing. However, many people die because they test too late. Their CD4 counts are very low, giving the ARVs less time to work effectively. In the past when treatment was not available, VCT was important to protect people from stigma. Since the roll-out of ARVs, many people are questioning whether VCT and written consent is the best policy for HIV prevention and treatment. We are joined by Justice Edwin Cameron, South Africa’s well known person living with HIV. Edwin believes that VCT slows down the response to HIV, and keeps many people from going onto ARVs. On the other hand Mark Heywood, Director of the AIDS Law Project, believes that testing must remain voluntary and pre and post test counselling must remain. Welcome Edwin and how are you today and welcome Mark how are you today? To kick off our discussion, I’d like to ask Edwin to explain to us what routine testing involves and why he thinks it’s necessary. But before that, let’s look at this short insert.]

VCT or Routine testing

Narrator: In South Africa at present you may not be tested fro HIV unless you volunteered for the test, have received pre test counselling and have signed a written consent form. After testing you must received post testing counselling. This process is commonly called VCT, meaning Voluntary Counselling Testing and it was intended to protect us from discrimination. Today however believe that VCT has become an obstacle for HIV. They observe that the process getting counselling and giving consent discourage many people from testing. Instead of VCT they advocate they are routing for HIV.

Jonathan Berger, ALP: The way many health professionals understand the law, it’s that they can’t say anything about HIV and about testing. And so they sit there with their hands tied behind their backs, and wait for people to request HIV tests, which people don’t do. Generally, people don’t do that.

Justice Edwin Cameron: In the old days, before AIDS was treatable, human rights lawyers like myself made it very difficult to test someone for HIV. If you go to an HIV clinic, the doctor’s not going to test you straight away. She or he is going to say to you, ‘Sign this form, go and get counselling, are you sure you want the test?’ We’re making it difficult for people to be tested for HIV.

Joan Aploon, Nursing Sister, Desmond Tutu Research Centre: When we test for any other disease, like diabetes, we also have counselling sessions because we have to make sure that they understand exactly what the disease is all about. But for HIV, because there’s such a lot of stigma attached to it, we also have to do more counselling, because the person will have to know. Before we test them we have to ask permission and then we have to do a pre-test counselling so that we can tell them what it is all about, what HIV’s all about, what the test we’re going to do, and also what can happen to the person if it is positive, and when the person is negative what they can do and then when we also do the post-test counselling then we also tell them again. If it is positive, we tell them what they can do. And if it is negative, we tell them how they can stay negative.

Justice Edwin Cameron: We are erecting requirements about expressed specific consent, written consent all too often and counselling that making it difficult for our healthcare workers to deal properly with this epidemic and all to often people with HIV are dying as a result.

Narrator: In 2005, Beat It! did a story on Prof. Ronald Louw’s untimely death. This prominent AIDS activist had made the choice not to test for HIV. He fell ill and was hospitalised. On 15^th May 2005, on suspicion of possible HIV infection, doctors tested and diagnosed him with HIV. Ronald died six weeks later.

Vasu Reddy: He said ‘Vasu, when I get out of here I want to make some serious changes to my life and what I will really like us to do is to start campaign for early testing.’ Which I think yet again is Ronald acknowledgment of his own denialisim and I think the campaign for early testing is an important lesson we learned from Ronald’s life.

Justice Edwin Cameron: We’re telling people, AIDS is different, AIDS is worse, AIDS is scarier. We are chasing people away. The human rights protections that we helped erect, are reinforcing stigma around AIDS. And we’ve got to break down those barriers to testing, to acceptance, and to treatment.

Jonathan Berger: So I think there, there needs to be a shift, to what I would call a ‘routine offer’ of testing. At every possible opportunity within the health system and we need to find ways outside of the health system too, to say to people, ‘You need to test. These are the reasons why you need to test. If we test now, this is what we can do for you. If you only test later, your options decrease quite remarkably. And that’s why you need to test.’ And then, leave it for the person to make an informed choice.

Support group

Justice Edwin Cameron: Where we are in the healthcare setting, and where the healthcare personnel, whether it’s a doctor or a nurse, can offer the person who may have HIV, treatment, whether it’s ARVs or other treatment but which can save that person’s life, we should make it much easier for the test to happen. A lot of people in South Africa have taken VCT testing, and I’m glad about that. It might be a million, it might be two million people involved who know about their HIV status, but it’s not enough. We’ve got nearly six million people in South Africa, and we want them all to know that they’ve got HIV, because knowledge is power.

Shalom Ncala: And Mark what are the points that you differ, because I understand you differ with Edwin quite a lot.

Mark Heywood: Where I think I differ from Edwin is just on the importance of pre-test counselling and how important pre-testing counselling is and remains in an HIV test. Edwin says that we should do away with it. I think that pre-test counselling is necessary to help people with disclosure, it’s necessary to help people prepare for the discrimination they may face. It’s necessary, very necessary, to help people understand treatment if treatment is going to be relevant for people. So I say, yes, make testing more available, make testing routine, but, simultaneously, invest in more counsellors. That doesn’t mean that everybody needs an hour of counselling before an HIV test. Some people may need three or four minutes, but some people may need half an hour to take them through the issues that they’ll have to consider in the very last point I would like to make is knowledge of HIV status isn’t always power. So the HIV test isn’t a magic solution to a lot of the problems that we face.

Shalom Ncala: Do you think that most of the other, factors of counselling are actually taken care in the post test counselling of which I’m sure judge Edwin Cameron is saying that post testing counselling is still an important vital matter that needs to be taken care of after a person is checked.

Vuyani Jacobs: In our country when we say let every one test, there is lot of education that needs to be done and correct education and correct information to ready people to test.

Mark Heywood: Well. Shalom I think that is an important question and I think is something the support group should talk about because in my experience, quite often post-test counselling doesn’t happen. People get tested, and then they’re kind of thrown back into society. If there was proper post test counselling , not just for people who test positive, but for people who test negative, then certainly we could say that, well, what has to be conveyed pre-test may not be so important. But, as with so many aspects of our response to HIV, very often, things fall down once a person has an HIV diagnosis. They don’t get counselling, they don’t get care, they don’t get advice, and they don’t get anti-retrovirals treatment.

Shalom Ncala: Sizophinda siqubekhe ngexoxophikiswano yethu yokuqathanisa ukuhlolwa iHIV noku zinikhezela nokuhlolwela iHIV njenge nqubo mgomo no Justice Edwin Xameron no Mark Heywood. {IsiZulu} [We’ll continue our debate on VCT versus routine testing with Justice Edwin Cameron and Mark Heywood. Don’t go away.]

Shalom Ncala: Reya le amuhela mona ho Siyayinqoba Beat it Support Group {Sestho} [Welcome back to the Siyayinqoba Beat It! Support group.] The programme for everyone infected and affected with HIV. Sibuyile no Justice Edwin Cameron no Mark Heywood ovela ku-AIDS Legal Project. Siqathanisa ukuhlolwa ngokuzinikhela nokuhlolwa ngenqubo mgomo. Manje ngoba sizizwile izivakhashi zethu asizwe ukuthi nuthini ninamalunga support group.{IsiZulu} [ We are back with Justice Edwin Cameron and Mark Heywood, from the AIDS Law Project. We’re discussing VCT versus routine testing. Now that we’ve heard from our guests let’s hear what the support group members have to say. ]

Vuyani Jacobs: In our country, when we say let every one test, there is lot of education that needs to be done and correct education and correct information to ready people to test firstly just to create a scenario of negative people that will remain negative for a long time. Secondly to create people who are HIV positive to respond effectively now. Thirdly we are speaking in a situation whereby people in Bloemfontein, in Cape Town, in Marizburg there is treatment now. I speak in a situation in Aberdeen I know of my best friend who died of HIV openly living HIV, have tested for HIV, knew what was needed but died eventually because he did not have any access, what should he do within the community where he was living openly with HIV.

Busisiwe Maqungo: Is not an exciting thing to go for HIV testing, It’s not like if I ndiyiphosile nahlanje [miss it today] at least there is still time tomorrow, I will go back again tomorrow. It’s something like we test and get it over with Ngawo lumzuzu {IsiXhosa} [right at the moment.]

Vuyani Jacobs: Like exactly what Busi is saying, it is quite correct in saying,

Busisuwe Maqungo: Yes exactly, but what I’m saying is that ngexa {IsiXhosa} [because] of the pre test you might change your mind.

Vuyani Jacobs: What the judge is saying is that… or to Mark he is saying [go and test] testani ne’ and the judge and Mark differ on counselling now wena [you] say that we can not just test because Abantu ababuyi,abantu abazi in a right manner and abantu abakho {IsiXhosa} [people don’t come back like they should, and they are not] prepared and Lihle she comes up with a very good point that says ‘No lets us create a situation and the scenario for people to agree for testing and to feel like testing’ not just, ‘come and test’.

Busisiwe Maqungo: Let people know that there is HIV, let people know that if they happen to test HIV positive there is treatment waiting for them, there is treatment for opportunistic infections, there is treatment ….. exactly there is a chance for people to manage their impilo yabo. {IsiXhosa} [health.]

Mark Heywood: It depends on what type of pre test counselling. Pre test counselling shouldn’t be something that aims to put a person off being tested for HIV, it should be something that is part of encouraging, recommending, supporting a person to test for HIV, but giving them vital tools of the need. I just want to make one last point, because Botswana has often been given where this routine testing policy has worked but what I find funny about Botswana is lots of people know their HIV status but people still live with HIV individually or silence or some stigma without any type of sharing. People, in the whole of Botswana there is only about ten people who are open about living with HIV, of the infection, so clearly in this process of testing there hasn’t been any empowering of people who have HIV about how to live with this virus and those they are my concerns I think.

Thami Mthembu: Into engifuna ukuyisho ngivumelana, I mean ngiyavumelana ngezinto eziningi ozishoyo, ngokubalulekha kwe counselling, kodwa into ishiwo nguEdwin kubalulekhile kakhulu indaba ukuthi ingabe umuntu aya for testing fanele siqale abantu bayibone njengento ya everyday lento. Kufuneke siqale ukuyinomalaza HIV as a manageable dieases not as a chronic illness, lokho kucaza ukuthi njengoba uyekudokotela complena nje yingaphi amapains sisito somzimba sibuhlungula udokotela routinely ngeke aze akunamgqibisholo akuna red tape azudlula kuyona azokushela ukuthi hayike funela ndiku testele idiabetes funele uconsent to xyz udokotela is his job ayeze itest afanele ayiyenze akudiagnoze ngalento ukuze akwazi ukuofarisha i-treatment ukumanage leso sifo.{IsiZulu} [Mark, I agree with what you’ve said about the importance of counselling, but Edwin said also very important. Going for testing should be made an everyday thing. We should normalise HIV as a manageable disease and not as a chronic illness. This means that when you go to the doctor complaining about whatever pains routinely, the doctor won’t have to go through red tape and ask for any consent when he tests for diabetes for example. The doctor does his job. He just does the necessary tests to make a diagnosis and offers you treatment to manage that disease

Fanie de Villiers: We talk about routine testing, are we talking about everybody in the car crash that comes in, because there is something that bothers me as, where I must agree with Vuyani is like, for instance, take Aberdeen, where there is no treatment available, I think we are gonna make more damage in such an area with routine testing, but I do agree with routine testing, but if treatment and counselling is available, do it there, so I don’t know, can you just explain to me what do you mean with routine testing?

Justice Edwin Cameron: We must make a distinction between routine testing and mass testing. We’re not talking about going out and catching everyone in South Africa and bringing them in and taking their blood. We’re talking about someone who comes to the doctor, in the healthcare setting, or to the clinic, or to the nurse and that person is presenting with some symptom that would make that healthcarer say, ‘I think that this might be HIV’. We’ve all seen it, we see it everyday in our workplaces and our communities, where we think that person is not looking well, and if you were a healthcarer you would test that person for HIV. In that situation, the healthcarer should be able to test for HIV, unless the person says, ‘No, I don’t want it’. That’s what we call routine testing.

Vuyani Jacobs: Many people live with HIV, who have been tested incorrectly with out counselling and with out necessary measures only came back by luck when they got sick and they got either TB like me, or other illness, like for instance comrade Ronald Louw could not get that luck because never tested. He was within the field, understood a lot of things around HIV. He took out a lot of responsibility to fight a lot of battles. Now I say that we need to create a society that don’t have those battles so that people can respond effectively.

Mark Heywood: The norm in most of our hospitals today is that people are tested without counselling. That’s still the norm. Many people are tested without giving permission, and they don’t go out of that process as empowered people who go and seek treatment and go and seek care. Vuyani said, very often, they go out and they hide, and they don’t know how to tell their husband or their wife or their boyfriend or their girlfriend, so for me what I see out of this we can have discussion, but our society as a whole has to create more tolerance, has to create more knowledge, create more information. So the individual decisions that we all have to take are helped by a more supportive environment. And I’m not asking for an ideal policy, I do agree with Edwin with all of us, there’s urgency about this, because as Shalom said, people are dying today who don’t need to be dying today. But, even as we move on that basis, we have to be very, very careful that we don’t hurt a lot of people as a result of our good intentions.

Shalom Ncala: [We talk more about voluntary counselling and testing after the break.] {Sesotho} unganyakazi {IsiZulu} [Don’t go away.]

Shalom Ncala: [Welcome back to the Siyayinqoba support group. The programme for everyone infected and affected by HIV] {Sesotho} Namhlanje sichathanisa ukuhlolwa ngokuzinikhela nokuhlowa ngokunqubo mgomo. Sino Justice Edwin Cameron no Mark Heywood abasisizayo ukuxoxo ngalendaba. {IsiZulu} [Today we’re talking about VCT versus routine testing. We have Justice Edwin Cameron and Mark Heywood to help us discuss this issue.]

Fanie de Villiers: [Vuyani I’m listening to what you’re saying and one of my concerns is that I work at Stellenbosch University, with a very different type of community. And, especially being a white community, it’s very difficult. VCT does not work. For the past three years, we’ve been running a VCT programme at Stellenbosch University. There are about 24 000 students on campus. And how many have tested? 700. We do advertise. We’re visible. But if you talk to students, what do they say? Especially the white students. They don’t have HIV. No they don’t, it’s the black people. If we can have a look at getting more people tested, I think especially within the white communities. I think their eyes will be opened to the reality of this disease. I don’t think we can continue the way we are at the moment.] {Afrikaans} Something needs to be done, but what exactly. I’m not sure

Thami Mthembu: Andifuni sidispute indima iVCT eyidallile eNingizumu Afrika. I think nge sikhathi i-VCT yasungula ngayo kwaku necessary ngedlela izinto zaziyona eSouth Afrika. Kodwa basibukhe ngedlela iHIV iprogresse ngayo. Kulominyaka, there is treatment available in our country the whole of other resources for abantu abaphila nge HIV which makes it a manageable illness {IsiZulu} [I won’t dispute the role VCT has played in South Africa. At the time VCT was necessary when it was introduced in South Africa. But let’s look at the way HIV has progressed. There is now treatment available in our country, and a whole lot of other resources for people living with HIV, which makes it a manageable illness,] and I really feel that routine testing is the way forward for South Africa.

Justice Edwin Cameron: We know so much about AIDS. We know people are scared of it. We know that there’s stigma, know that there’s discrimination. People are dying unnecessarily. But the most important thing we know about AIDS is what Thami has said, which is that this is now a medically manageable viral particle. Everything we do has got to be directed towards treating HIV as just another illness. We’ve got to get to the point, whether this year, next year or ten years time where it is simply a viral particle that can be totally managed in more than 90% of the cases where people have HIV. And we’ve got to be careful that we are not protecting people so much, that we’re protecting them into not receiving treatment and keeping their lives.

Mark Heywood: We have to, at all times, try to respect the dignity of people who live with HIV, and people who don’t live with HIV so we may not or may some how… but at the end of the day I do think that there is a group of people we do agree that testing is a critical intervention that needs to be scaled up, and that needs to be scaled up fast.

Shalom Ncala: Namhlanje besikhuluma ngokuhlolwa ngokuzinikezela ukuti ngabe khumelehini sishitshe imithetho eSouth Africa sihlole ngokho nqubo mgom. Kumele sibheke idlela ezinsha ezokuhlolwa njengoba nesimo sisishintsha. Ukuphuza ukuhlola lapho usenegculaza yenza impumelo yokulwatsha ingabi mihle. Hamba uyo hlolwa, welashwe hiyonadlela. Lesi bekuyisiqephu sokugqina kulesingabo sikuthokhozele kakhulu ukuba nani izinyanga zithupha isidlule futhi sizophinda sibuye ngonyaka ozayo nohlelo oloshasha. Siyathemba ukuthi nikuthokhozele ukuba nathi kulezinyanga isithupba ezidlule futhi niyawozwa umoya we Siyayinqoba ngoku bambisana ngayidlula. Siyabonga kakhulu ngezincwadi, imibono kanye nemibuzo yenu. Sititeni ku www.beatit.co.za uzekube ngokuzayo. Nisalekahle. {IsiZulu} [Today we’ve been talking about voluntary counselling and testing and whether we should change our policy in South Africa to routine testing. We need to look at new ways of testing as conditions change. Testing late when you already have AIDS leads to bad treatment outcomes. Get tested, get treated - it’s the best way forward. This is the last programme in the present series. We have really enjoyed being with you for the last six months and we will be back next year with a brand new show. We hope that you enjoyed being with us for the past six months and are really feeling the Siyayinqoba spirit, and together we can Beat It! Thank you for your letters, suggestions and questions. Keep in touch with us at www.beatit.co.za until next time, goodbye.

Question: Testing for HIV is the first step to dealing with HIV. Yes or No?

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