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Beat It! 2000 Episode 5

In this episode we looked at how a badly run public healthcare system unnecessarily put people’s health at risk when treatment was available. The episode went on to say that through becoming treatment literate and knowing one’s rights, when faced with poor service in the public health sector one can demand better service.

Mercy Makhalemele: Hi Paddy and everyone out there.

Paddy Nhlapo: Heita, Mercy and welcome to Beat It! – the programme that really empowers all of us living with HIV and AIDS, and those people who we really depend upon to make it through each day: that’s our partners, families, friends, and of course employers and colleagues; sounds like just about the whole country.

Mercy Makhalemele: Yes Paddy, HIV is touching everybody, from the president’s office down to the people in their zozos and their RDP houses. So what’s up for this week?

Paddy Nhlapo: Well, this week in our Special Report, we tell the story of the struggle for fluconazole, some of you might know it as diflucan, made by Pfizer. You know, one of the first really horrible things that happens to us, just about everyone with HIV, is this oral thrush thing.

Mercy Makhalemele: You are not joking. I’m really worried about the number of friends who have been dying from crypto meningitis. It’s what’s happening to people who depend on our public hospital, and fluconazole is the only one thing that can really treat these diseases.

Paddy Nhlapo: And, after the break the Support Group: we are talking about your rights when you have to go into hospital.

Special Report - Access to treatment

Zackie Achmat: At the conference of people living with HIV a few months ago, the vast majority of people said that when they come to hospitals, they are told to go home and die. And today we say, and the first recommendation we would like to make to our government is: please, can the Minister of Health, Dr Nkomo and Parliament, issue a very clear directive, immediately, to say that people with HIV need to be treated equally in hospitals. We don’t ask for special treatment, we ask for equal treatment.

Sibusiso Mkhize: Since October 1999, I wasn’t sick, I was healthy, I just decided to go and make a check-up for myself. Then I found that I am positive.

Ronald Louw: He fell suddenly ill.

Sibusiso Mkhize: I’ve got that headache which was so strong. That was even coming down right here, all around, all the head was just in pain.

Ronald Louw: He was taken to one of the local hospitals for diagnosis, and they referred him to a hospital about some hours drive outside of Durban.

Sibusiso Mkhize: At Edmonton there they said that they cannot admit me because there are a shortage of beds. I have to go to Osindisweni Hospital in Verulam.

Ronald Louw: I phoned the doctor to enquire what the circumstances were and whether we couldn’t take him to a local hospital. And the doctor said, well actually they just like to spread the patients out around the province.

Sibusiso Mkhize: So I decided that, no, I cannot go to Osindisweni, then I come to TAC offices where they take me to McCourt Hospital. Then I was admitted there for one night, and then in the morning they phoned Ronald Louw.

Ronald Louw: Eventually we got him to King Edward which was the closest hospital that suited him and his family and his friends.

Sibusiso Mkhize: For the first time I was admitted at Hut Five, I think that Hut Five is just a temporary stay ward.

Ronald Louw: But when he was first admitted, he came in having already been diagnosed with cryptococcal meningitis, it was very clear that he had to go on amphotericin immediately. When he arrived in hospital, the sister on the ward said there was no amphotericin on that ward; they would try and find it on another ward. And I phoned a few hours later and I spoke to the nurse on duty in the evenings, and she said that no, she didn’t know anything about this and no, that no amphotericin had been found, and that in any event their dispensary was closed and would only be opening at ten o’clock the next day.

Sibusiso Mkhize: Then at Hut Five they become full and then they just choose those people they see that that can make it, they can walk. They transfer me to D ward.

Ronald Louw: My first impression was, having been utterly appalled at the conditions in the hospital, one was struck immediately by the filth of the wards. What were your impressions of the ward?

Sibusiso Mkhize: One thing, it was not in a good condition, because even other patients they were complaining, but they are free to go and direct to the nurses. Mm, that ward I was going in was a horrible ward because there were no toilet, no tap. Another thing is that this was not clean at all.

Ronald Louw: We eventually found them down in this little dungeon ward and the one thing that struck me straight away was that there was dried vomit still stuck on the walls which hadn’t been cleaned up from previous patients, and the floor was black from the dirt. It was black it was so dirty.

Sibusiso Mkhize: I was crying from the whole night. Not that they don’t offer treatment, but there are some patients that come overnight that need the special attending.

Ronald Louw: We were quite appalled, and then Sibo said to us that he had to go and fetch his food himself. I didn’t quite believe him at first because he was on an intravenous drip.

Sibusiso Mkhize: They told us that we must close the drip and go where we can get food.

Ronald Louw: I then realized that in fact this was the case, that the patients in this, let me call it the dungeon ward, had to go and collect their own food, because I suspect the nurses couldn’t push the trolley because there were stairs.

Sibusiso Mkhize: He was keeping on questioning us with what’s really happening in this ward? And we said: “As you see. What you see is what it is.”

Ronald Louw: I was quite puzzled, because when we arrived we had seen odd nurses here and there, collecting food trays, but there wasn’t a nursing staff in sight. We eventually found them having a church service, all of them appearing to be sitting in the church service, nobody attending to any of the patients.

Sibusiso Mkhize: Ronald, he never come for the first night, then he come after the second night. And then he started to take me to the new ward.

Ronald Louw: You didn’t tell me that the other patients were also complaining.

Sibusiso Mkhize: Mmm, they did keep on complaining because even in the morning before they come the sisters calling me, that I send a complaint through yourself. And they decided to take me to the new ward.

Ronald Louw: I think I spoke to the Deputy’s assistant, I forget her name now, and she asked me please to put the complaint in writing. So I said: “No, this is a matter of more urgency than writing. Here is somebody who’s on an intravenous drip for meningitis having to climb stairs to fetch his own food.” With credit to her, she did sound quite shocked, and she said she would look into it immediately.

Sibusiso Mkhize: Then, the following day, there comes two sisters. They were screaming like, saying that they cannot lose job to us.

Ronald Louw: Well, the next day, when I went to visit Sibusiso again in the dungeon, the lights still weren’t on, the same teacups on the windowsill were still there, and the smell of urine was still there, but Sibusiso wasn’t, he’d been taken away, and he’d been taken to another ward.

Sibusiso Mkhize: In 5B ward was in good condition it was a ward, a real ward because even the people who are working in that ward, night-shift staff, they cannot sleep. Even when you wake up from sleep, you can see sister moving around, checking that you don’t have problems.

Ronald Louw: At least in the other ward, which was exceptionally overcrowded, there was at least an air of activity and assistance going on, and so on, which I think was more congenial.

Sibusiso Mkhize: First of all the doctors said I’m going to get about ten drugs through injection, then, also, they gave me that for ten days. Then, also, they have the fluconazole, after maybe four days they treated me with the injection. Then, they said I have to get the fluconazole because my headache was so strong, so I need to make things easy.

Ronald Louw: I think the hospital should create, in a sense, a hotline, where complaints can be taken up immediately. And patients should know about this, patients should be informed.

Sibusiso Mkhize: Ngaqhubeka ne-treatment izintsuku eziyishumi. Kanjalo sekuhlanganisiwe ne-Flucanazole, nantsi engiyisebenzisayo. Thola nje elilodwa ngelanga, ipilisi elilodwa ngelanga. So yiyonake i-Flucanazole, bese ke ngitshelwa ukuthi mangisebezise yona, yiyona ezokwazi ukungisiza. Ngiphume ngempela esibhedlela hayi sengiphilile, sengizizwa ukuthi hayi angisenayo inkinga. {IsiZulu} [And so I continued with my treatment for ten days. This treatment includes fluconazole. This is what I used most. You take one tablet per day. So I’ve been advised to use fluconazole because it will help me. In truth, when I left the hospital I could feel that I was healed. I no longer had this problem. I was so shocked that I suffered from things that need to be sorted out by the fluconazole, because last week, we were at Pfizer at Pietermaritzburg, fighting for that reducing of the price of fluconazole, then that flucanazole I wasn’t know that it will help me. It’s impossible for one tablet to be taken daily for thirty four rand; government or any sectors, they have to do something to improve the prices of fluconazole.]

Zackie Achmat: And to make it very real for us sitting here, many of us have had thrush. I’ve had thrush, and because I was not on a medical aid, it cost me about five thousand five hundred rand, which is more than triple therapy, to get rid of a really bad case of thrush. I have a cousin who have AIDS and I personally, illegally, imported from Thailand at four hundred and fifty rand, what I paid R5 000 for. Now, the question here is, and I’ll put it directly to the people who say we should use the state tender; fluconazole has been on the state tender for decades, and it is only the patent which has kept the price at thirty R6 per 200mg capsule. In the private sector, you can pay anything between one hundred and R50 and two hundfred and R50 for the same capsule. We could get the same generic, in a really good quality, from Thailand, for R4 or less.

Paddy Nhlapo: You’re watching Beat It! – your guide to better living with HIV and AIDS.

Mercy Makhalemele: If we all join forces, I’m sure we could persuade our government to provide fluconazole to everyone that needs it, just by importing cheaper generic medicine from Thailand or India.

Paddy Nhlapo: Coming up in our Support Group: how to make sure you get adequate treatment when you go to hospital.

Mercy Makhalemele: And then it’s the Red Noose and Red Ribbon time again. So let’s go.

Support group

Adeline Manqcu: Government has recently issued valuable guidelines for the treatment of HIV. This document still largely avoids the issue of antiretroviral treatment. However, it does contain valuable information for correct medication for HIV diseases. The problem is that the document has not been released to the public yet.

Dr Hermann Reuter: One of the problems of not having national guidelines is that clinics and hospitals are forced to take decisions themselves on how to spend their budget and they would often cut services for people with HIV.

Busisiwe Maqungo: I was promised mna ukuba xa befuna nditeste igazi lomntwana wam into yoba isizathu sokuba nditeste is that yena kufuneka eyazile into yoba anikwe into ethile anganikwa into ezonikwa umtwana o-negative, okanye o-normal ke, kuba ingathi thina si-abnormal. So ke yinto ofuneka uyi-demande na njengamhlali wase-South Africa ukuba ndinje and ndiyayazi ukuba nizondixelela ukuba ndi-HIV ingathi sendizofa, andikrobanga engcwabeni qha ndifuna i-treatment efana neyabanye abantu. {IsiXhosa} [I was promised that the reason for testing the baby was to ensure that she gets certain treatment that is not meant for HIV negative babies or a normal baby, because we seem to be abnormal. Treatment is something we should demand, as South African citizens. Just because I’ve got the virus, does not mean I have a foot in the grave. I just want treatment.]

Dr Hermann Reuter: The government has now for some time been working on some guidelines, and they’re available in this form for a selected few people, but they are not for publication yet, so doctors at the clinics can’t use them.

Sindiswa Godwana: I-treatment ndingayifumana phi na? Impendulo kwathiwa emva kweenyanga ezintandathu. So ndazixelela into yokuba kufuneka iqale lento ityhutyha umzimba wam undithyefe, zendithi ndiyifumana ndiyifumane sendingenawuthini, sendigena engcwabeni. Emveni koko ayikho i-treatment kodwa bathe ndizayifumana after six months. Like ndiyakhathazeka ngalo lonke ixesha, mhlawumbi inoba bafuna sithini, like urhulumente kanye kanye kuqhubeka ntoni. Ndisuke ndibe-lost andiyazi. {IsiXhosa} [When am I going to get treatment? The answer was: “After six months.” So I thought maybe they want this thing to poison my body. So by the time I get treatment, it will be too late. I’ll be going to my grave. After that six months, there was no treatment. What do they want should happen to us? What is the government doing? I don’t get it.]

Busisiwe Maqungo: Maybe the doctor will know.

Dr Hermann Reuter: Although they were basically designed to assist doctors, to decide on what treatments to use, I think it is important that, for you as people living with HIV that you should read them and try and understand them. If you discuss them in a support group you can understand the medicines, and it will assist you to be empowered to understand what problems to expect. A very common problem is shingles, where you get a very painful skin rash, and the guidelines suggest that that should be treated with a medicine called Acyclovir within two days time. With knowing the guidelines you can demand from the doctor: “You are just giving me panados. Don’t. I need Acyclovir for this shingles rash.”

Mercy Makhalemele: That’s where I get confused with doctor’s principles, because I know that one of the main principles for doctors and healthcare workers is for the interest of the patient. Now, with doctors, we come to your clinics, we come to your surgeries. You don’t have the treatment that we need. How? Why should we come to you if you don’t make sure that the treatment that we will come to you to ask for is available? I mean, you obviously have a role to play.

Dr Hermann Reuter: Everybody living with HIV experiences a lot of health problems and experiences a lot of problems of not being treated effectively at clinics; not being treated like a person on a personal level but also on the medication side, not receiving treatment. And I think that puts a responsibility of people in support groups, to actually try and learn more about this disease. And I think the more you know about the disease and the treatments that should be available, the more you can demand them.

Marius Thomas: Ek sê my frustrasie is dat: moenie ‘n mens behandel as of jy ‘stupid’ is nie en moenie jou behandel as of jy niks is nie. As ‘n HIV persoon vra jy nie vir spesiaale behandeling nie; jy vra vir gelyke behandeling. {Afrikaans} [My frustration is that: don’t treat a person as if he she is stupid, and don’t treat people as if they are nothing. As an HIV person, you are not asking for special treatment, you’re asking for equal treatment.]

Dr Hermann Reuter: Another example of medicines that you should know of is fluconazole. If the thrush that you experience in your mouth goes into the oesophagus, if it goes into the pipe through which you swallow, and it gives you painful swallowing, the only medication that can treat that is fluconazole. However, due to the high price of the fluconazole, it’s not available. But, in the treatment guidelines it is specified that doctors should be giving this medication, so you as a patient have got the right to demand that medication.

Mercy Makhalemele: These are all ethical things. Now, there are laws that bind doctors, there are ethics that bind doctors. Why are these ignored by doctors? And what legal action can be taken?

Dr Hermann Reuter: I think the majority of doctors have clearly failed their responsibility as doctors, their responsibility towards their patients to speak out on these injustices happening in our health services. And it is sad that although HIV/AIDS is the most commonest problem that we see in the clinics as healthcare workers, we don’t have any guidelines as to how to treat these diseases. And that is why we often, as healthcare workers, have difficulties. How can government function a proper healthcare service if from the political level there’s no support towards the health services?

Mkhanyesile Mpalali: Ingathi mhlawumbi xa wena uye esibhedlele, umhlawumbi ekliniki, ingathi uzofuna i-special attention kanti it’s not that abantu aba-HIV positive sifuna amalungelo afanayo sonke, sitrithwe ngohlobo olufanayo and also sifuna amayeza abantu abawafumanayo ezikliniki. {IsiXhosa} [As if, when we go to the clinic, we demand special attention. We just want equal rights and to be treated the same. And also, we want the same medicines that people get in clinics.]

Paddy Nhlapo: So, the moral of the story is, if you want treatment in our hospitals, don’t go alone. Be prepared to demand your rights; no more take some panado and go home and die.

Red Ribbon and Red Noose Awards

Paddy Nhlapo: Each week we give a special Red Ribbon to someone who has made a contribution to the struggle against HIV and AIDS.

Mercy Makhalemele: And the Red Noose to someone or group who should get the noose for disregarding the rights to life, health and respect of human rights for People Living with HIV. So let’s start with the Noose. Listening to Sibosiso’s story, I think we have to give this week’s Noose to William Steere and Pfizer, the greediest pharmaceutical companies in the world. It seems as if their profit from Viagra just stimulates their lust for more profits at the expense of other people’s life. They charge the government R29 for a 200mg of fluconazole tablets. The government can buy this at R2.10 in Thailand. That means, for every one patient treated at Pfizer’s price, twenty can be treated at Thai’s price. So, until they give up the so-called patent right on this essential medicine, this week it’s the Noose to Pfizer.

Paddy Nhlapo: This week we would like to recognize some of the many individuals and NGOs doing positive work. This week’s award goes to the Children’s Rights Centre, that’s Children In Distress, working in the Coalition for Children’s Rights Living in an HIV Positive World. This Coalition unites people across KwaZulu Natal sharing information about skills and mobilizing for children and their parents to live with HIV. We all support much more resources being put into elevating the plight of AIDS orphans but, the Children’s Rights Coalition for Children Living in an HIV Positive World’, have taken on board the need to get HIV positive care providers onto treatment, so that many children are not left orphaned.

Mercy Makhalemele: And that’s our programme for this week. We hope you enjoyed watching and remember we really value your feedback, suggestions and please contact us on the number given below.

Paddy Nhlapo: Join us again on Tuesdays at five past six on e and remember the repeats at twelve thirty on Sunday.

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