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Beat It! 2000 Episode 13

Treatment Literacy has become a key focus area not only for the Community Health Media Trust but also for the Treatment Action Campaign. In this the last episode of the 2000 Beat It! series we look at the treatment literacy workshop set up by the TAC and the Treatment Action Group from New York. This specific workshop was empowering people with information around clinical trials. In the profile section we also met Farieda Abrahams and her sisters. Farieda at this stage had full blown AIDS and would succumb to the disease the following year.

Paddy Nhlapo: Sebenzisa ama-condom everytime {IsiZulu} [Use a condom every time]. I would like to welcome you back again to the last programme in the current Beat It! series, and hello Mercy.

Mercy Makhalemele: Yebo Paddy nwana waheso {Sesotho}, [Yes Paddy, my brother] and every one at home so what’s coming up on our last programme.

Paddy Nhlapo: Well to start with I would like to share with you a poem which came from a viewer in Ipopeng in Kimberley. The poem reads: “I am HIV positive, mine developed into full-blown AIDS. I was once a thriving member of society, today I’m a social outcast, ’cause I’m infected by a universal killer disease, because I’m HIV positive. I am not a member of the dissident intellectual, not a member of scientific fraternity, I’m just HIV positive. Public bickering deteriorates the already weakened immune system. For the HIV positive, AIDS is a reality, not a concept for political gains. When you are HIV positive, you are HIV positive. Death is your daily companion. Perhaps the dead and the AIDS infected must have budgets, debating forums, research laboratories. We need a cure, not empty promises. In the past, people supported Nazism, apartheid, communism, sexism, and had a second chance, later to deny allegiance. For the AIDS infected, there is no second chance.

Mercy Makhalemele: Thank you for that wonderful poem from Ipopeng in Kimberley. We need to hear from you to know that the programme is speaking to you. From the many letters we have received so far, I really think it’s doing that.

Paddy Nhlapo: We have all heard about the controversies surrounding clinical trials. For people living with HIV, these trials are often the only way of gaining access to medication. For many doctors, it’s about making money. For drug companies or some drug companies it is about profits.

Mercy Makhalemele: Ke nnte {Sesotho} [That is the truth] Paddy. So this week, we look at the experiences of people on trials.

Paddy Nhlapo: And after that, we get together with our wonderful support group, unfortunately for the last time in this current series.

Mercy Makhalemele: But first, let’s meet Farieda Abrahams, who has been battling to survive with HIV. Farieda would have succumbed to hear disease, had she not been able to access affordable generic fluconazole, which cured her oral thrush.

Profile - Farieda Abrahams

Farieda Abrahams: When I was in Durban I was staying in the Salvation Army, and I got sick. I’m telling you, the pain comes like, you know, somebody just comes and he pokes you with a knife. It feels like that and I screamed and I looked at the door again, I saw the paramedics walking. They said: “No okay, which hospital you attend?” I said: “Addington Hospital.” When I was discharged the doctor asked me: “My dear, you must try and talk to somebody. You’ve got AIDS.” You know the day I came back I was gonna come out straight and tell him, my sisters and my brothers. But then I said: “No, I’m still brave, let’s carry on.”

Mashnoona Abrahams (Farieda’s sister): The minute we found out that she was affected, we didn’t judge. It actually brought our family closer together. It’s difficult, it’s very difficult, especially with me being the only person working, and having to support the family financially. And also, emotionally it’s a big strain on the family.

Farieda Abrahams: My brother asked: “You must eat more.” I looked at him, my sister said: “Ja, ja, ja.” But my appetite, really, it’s not what it was.

Washiela Abrahams (Farieda’s sister): In this year that she’s been diagnosed, I’ve learnt so much. You know, of the epidemic I only knew what I saw on TV, but when she was diagnosed I did it my duty to find out and to know that a person living with AIDS is still my sister.

Farieda Abrahams: Everything’s changing, my whole lifestyle is changing.

Washiela Abrahams (Farieda’s sister): The drugs that she’s on, or tablets; medication that she’s taking is only Bactrim, two a day, from Monday to Friday, and Vitamin B compound, and then she takes a sleeping tablet at night. Last week, she was very, very ill so they put her on morphine, ten milliliters every four hours.

Mashnoona Abrahams (Farieda’s sister): When we took her to hospital, you know, we spoke to Sister Sue Roberts on the Friday, and she said: “Well, it sounds like meningitis”, and she’s going to be on duty all weekend, and we must bring her in.

Farieda Abrahams: I had a lumbar puncture again, and my back was finished, it was paining. And, she said: “No, no, no, no, there’s no beds.” I looked at her, I said: “Excuse me, but what is those things that’s standing there?” She said, “No, no, no, you’re discharged. You must just wait for your family to come get you and go.”

Mashnoona Abrahams (Farieda’s sister): There’s no medication, nothing, not even a painkiller.

Washiela Abrahams (Farieda’s sister): No notification that she’s been discharged.

Mashnoona Abrahams (Farieda’s sister): All our telephone numbers was on her phone.

Farieda Abrahams: Like they say that, we’ve that got AIDS, must not be irritated and you mustn’t be stressed or mustn’t have a lot of stress. Now, I want to know how can you not have stress. I don’t really need my family to still carry on seeing my suffering, although they stand with me and they protect me and guide me. I just wanna go to God and just be with him, sit at his feet and rest.

Mashnoona Abrahams (Farieda’s sister): I would like to say, especially to our president, Thabo Mbeki, this is a message to you Sir: I am pleading, as a family, this disease has broken our family apart, but all we can do for our sister is give her the love and support. And what we need from you is openness, and a bit more money for the drugs that, they can’t cure, but can help the people suffering with AIDS and HIV.

Special Report - Clinical Trial

Mark Harrington (Treatment Action Group, TAG): A clinical trial is basically a scientific experiment that’s done in human beings. And they can be important for many reasons. They can help us to get access to a new drug, to treatment, to a potential vaccine, or to healthcare. So they can help us, but they can also hurt us. They can also help us to give knowledge to future people with AIDS and HIV.

Dr Steve Andrews (HIV/AIDS specialist, Brooklyn Medical Centre): When you come onto a clinical trial, are you gonna be given active drug, or is someone just going to be playing with your life.

Anthony Fernandes: What I found really disturbing at the time was actually that I found even my doctors weren’t really sure. You know is different opinion all the time all over this one says: “No, you’ve gotta go on now”, this one says: “A bit later.”

Dr Steve Andrews: Are you actually going to be guaranteed clinical care? Okay, or are you just being used as a guinea pig? What does that clinical care and that good trial process involve, in terms of ethics, science, clinical care, ongoing process, assessment?

Anthony Fernandes: Well the first three months was hectic. I had lots of rashes, I had lots of acne. I had terrible headaches, nausea, so bad actually that I could not work any longer.

Michael Marco (Treatment Action Group, TAG): Don’t make anybody at the clinical trial make you feel like they’re giving you charity. That is wrong.

Anthony Fernandes: And there’s constantly this kind of reminder almost like you know, this is a study drug, and you’re very lucky.

Michael Marco: They need you. Remember, they’re asking a question. Unless they have people like me or Gregg or people like you in the clinical trial, they’re never going to get the answer.

Anthony Fernandes: That I understood from day one, and that’s why I actually insist on my doctor being very straightforward, very honest. I actually hate the kind of soft talk, you’re gonna be alright, you’re gonna be okay. I wanna know.

Micheal Marco: It might not benefit you. It might be no different. The drug that you get may be no different from the sugar pill. It might not work. It could even harm you. There’s no 100% guarantee that in a clinical trial, you’re gonna get better.

Dr Catherine Orrell (Clinical trial investigator Somerset Hospital): All the drugs do have side effects, okay. And side effects can happen in up to 10% of people or sometimes more, like the diarrhoea, but in 90% of people they may not happen. And we have had people who’ve had such bad side effects that, even though their CD4 has gone up, they have wanted to stop their therapy, because they feel so sick. But it is few, it’s not everybody. And for most people even, these treatments do have benefit, rather than harm.

Gregg Gonsalves (Treatment Action Group, TAG): I’ve been in a clinical trial for four years of a protease inhibitor called Viracept, AZT and 3TC. And then I went to my own doctor to get a drug called Imodium, which is for diarrhoea. Because, this drug, the protease inhibitor, which is an antiretroviral, gives me diarrhoea. And I just wanted you to see the bottles so you know what they look like. I go to a clinical trial site, to the university every month, and they give me drugs and they take blood out of my arm to see how I’m doing, and I’m going to pass around one dose. I take nine pills twice a day, so 18 pills a day the blue pills are the protease inhibitor, the white pill is AZT and 3TC combined into one, and the little brown ones are Imodium, the anti-diarrhoeal to protect me against the side effects. And um, you can take a look.

Dr Catherine Orrell: Now we have 30 places for people every two or three months. And you know how big our epidemic is. So the opportunities we have to offer people, you know, they are small.

Dr Steve Andrews: And so, particularly in South Africa, we look for trials that have what we call roll-over protocols.

Dr Catherine Orrell: We argue with the companies for ongoing therapy, and at the moment they are giving us ongoing therapy for as long as the treatment is working for you as a patient.

Dr Steve Andrew: However, it is important to remember, that clinical trials are not about primarily about providing access. They are certainly, as you say, used to provide access, but they are primarily about testing medication.

Gertrude Qiki: I-viral load yayingu-21 thousand egazini, before ndiye kwi-trials, i-CD4 count yayingu-395. Ndiye kwi-trials ngo-June but ngo-August yathi i-viral load yam 5 thousand, kodwa ngoku bendiye kwi-trials i-viral load yam ithi 50, i-CD4 count ingu-895. Ezi-trials ziyasebenza. {IsiXhosa} My viral load was 21 000 before I started the drug trial. My CD4 count was 395. I started the trial in June and by August my viral load was 5 000. But now that I’m on a trial, my viral load is 50 and my CD4 count is 895. These trials work.

Paddy Nhlapo: You’re watching Beat It! – your guide to better living with HIV and AIDS and this is the last show in the current series.

Mercy Makhalemele: So clinical trials are out there, definitely. Find out from your local clinic or hospital, or your doctor. You can also check with Baragwanath Hospital, King Edward Hospital, Somerset Hospital, if you are interested in taking part in these drug trials

Paddy Nhlapo: And now let’s go and join our support group where we will be looking, once more, at the whole question of empowerment.

Support Group - Empowerment

Adeline Mangcu: Alright group we are back again and this is wonderful. This is how we visualized the whole thing, when we started this group, that we’d be able to empower each other and then you girls also wanted to ask some stuff, and Marius, you also wanted to find some things for us. So it would be wonderful if some of us could just give us a feedback on that because I think this is what we need to do.

Sindiswa Godwana: Siye sahamba ke, no-Antoinette kuba ke siye seva uba kwi-internet café, ikhona i-information esinothi siyifumane pha. So ndavuya ke uyaqonda, ke ngoba nam ndiye ndaba ngomnye wabantu abathe bayaphayana. Siye ke safumana i-HIV/AIDS update sa clicka kwi-HIV Research Unit Somerset Hospital. Apho ke siye safumanisa into yobana ke kukho i-patient recruitment for HIV drug trials at the Diana, Princess of Wales, HIV Research Unit. Kufuneka, izinto iziya zifuneke, i-viral load yakhe ibiphakathi ko-5 000 no-100 000. Apha kwi-drug trial, umntu uzoba ebhedini, uyoba ebhedini ixesha elingange-28 days. I-patient ayivumelekanga iphume e-wardini. Angaphuma ahambe ayodlala i-tennis, i-pool or amamele umculo, ne-phone numbers, email and imali for transport iyafumaneka. So iyasinika ithemba ke. {IsiXhosa} [I went with Antoinette to the internet café to get the information. I was happy because I was chosen to go there. I found an HIV/AIDS update on the HIV Research Unit of Somerset Hospital. We read about patient recruitment for HIV drug trials at the Diana, Princess of Wales, HIV Research Unit. Things that they want, your viral load must be between 5 000 and 100 000. And here in the drug trial, the person on this trial will stay in the hospital for 28 days. The patient is not allowed to leave the ward. They can be out side and play tennis, pool and listen to music. Telephone numbers, emails and the money for transport is available. So it gave us hope.]

Paddy Nhlapo: There was an accusation that pharmaceutical companies are inducing people to take drug trials. So what they do now, they only give you money for transport, and it cannot be more than R50 per visit.

Marius Thomas: I’ve been in a community house which is a building within Salt River, Cape Town. It holds the community of progressive projects. And one of the projects that I went to is Triangle Project, which is a gay and lesbian organization.

Marius Thomas: Anybody in the house?

Triangle Project employee: Hi, how are you?

Marius Thomas: I’m fine. I just need some information man.

Triangle Project employee: Sure. Have a quick look at them and I’ll call Bentley.

Glenn De Swart: Hou gaan dit vandag? {Afrikaans} [How are you today?]

Marius Thomas: Ek kla nie. {Afrikaans} [I can’t complain.] I have a lot of problems with getting at peace with sexual orientation also since I’m living with the virus I need to become more confident in terms of dealing with those kinds of issues. What do you think, what will be best for me?

Glenn De Swart: Ja, now none of the librarians are here at the moment so…

Marius Thomas: Oh, that’s okay, you look like a very good librarian.

Marius Thomas: The other organisation that I went to was the Sex Workers Organization.

Woman: Condoms make it safer, how to use your condoms. Female condom, STI’s, and then we’ve got here; if you want you can get some Slide Effect lubricated condoms the Pentium. These are just ones we have around here so if you wanna help yourself. I think there’s something also quite exciting like the Rough Rider hiding around here, so you know but always just check your expiry dates and stuff like that and make sure you know because they are lying here so.

Marius Thomas: And this actually is your newsletter?

Woman: Ja, these are our newsletters so just help yourself to that.

Marius Thomas: You get into Cape Town or you get wherever you are, just get hold of your organisation and you find out. So if you’re out there and you’re gay or you’re a lesbian person or if you’re a sex worker don’t feel discriminated, even more if you’re living with the virus.

Antoinette Fouché: Now I just wanna share with you guys something, and the good news is that I’m gonna be a mommy. Hopefully very soon, okay, not later I’m not gonna go this way (she pats her stomach) but, uh, child welfare has approved us and they said: “If you’re HIV positive it doesn’t matter, you can look after children.” It’s not going to be permanent; it’s going to be temporarily but permanent, on an ongoing basis. We’re gonna take some kids in, one or two, and we’re gonna take care of them. And maybe they’re gonna go back to real parents, or to people that’s gonna adopt them permanently. But they’re coming in a few days time, and we’re gonna talk about it and sort it out and start planning it.

Red Ribbon and Red Noose Awards

Paddy Nhlapo: Kungumsebenzi wami lo ukuthi nginamukele kuBeat It! {IsiZulu} [It’s my job to welcome you back again on Beat It!]. We hope you have enjoyed the series and every week we acknowlwgde the contribution of someone or group supporting the struggle against HIV and AIDS with a redribbon.

Mercy Makhalemele: And we give the Noose to someone or group who has disregarded the rights of HIV people. So who do we give the Noose too, this week?

Paddy Nhlapo: Well, this is a very special one that I’ve been saving up for last. You know that famous ABC campaign, well I think it should be ABC plus D campaign and D standing, of course, for death. As long as we go on pretending that we are abstaining or being faithful, we will come to the conclusion that we don’t need condoms anymore. How many people do you know that have 100% abstinence or faithfulness record? I’m betting they are almost nonexistent. The way we live today it’s just not possible. So the A and the B part undermines the messages about condoms and safer sex, making it a nonsense of the whole thing and in fact leading to the D part. We need clear, safer sex messages which put condoms first and clearly say: “Use condoms, or beat it.” So this week, I say, it’s the Noose for all the confusing, moralistic, out modeled ABC messages. We quickly need to find a new one, brand new one, to save ourselves. So, it’s the Noose.

Mercy Makhalemele: On to this last Red Ribbon. We’d like to acknowledge all those who have helped make this series such a pleasure, so a big thank you to all the volunteers in the support group who are HIV positive. Adeline, Sindiswa, Faghmeda, Marius, Mkhanyisenyi, Antoinette, Busisiwe, you have became our brothers and sisters. And also a big thanks to our Beat It! Team: Laddie, Jaco, Midi, Monique, Peter, Quentin our youngest member in the crew, Rhoda, Mario, Jack our director, and most of all, for the nice lady who has made us look good, Nazma. You all worked hard to make the series a success. So thank you once more, and for you it’s a big ribbon, and lots of kiss and love from myself and Paddy.

Paddy Nhlapo: Ngithanda ukotsho bafowethu {IsiZulu} [I would like to say guys], it’s been great being with you over these last 13 weeks, and your letters and emails have really meant a lot to us, so one last time, here’s the address. If you want copies of the programme, or want to give us your feedback, please, do so.

Mercy Makhalemele: We hope to be back on the air soon enough. So until then, it’s goodbye from me and Paddy, and remember, together we will Beat It!

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