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Beat It! 1999 Episode 5

In this the fourth episode of Beat It! we looked at the state of public healthcare in South Africa and at how this impacted on both the positive community and the community at large. In the first of a series of Human Rights inserts we interviewed Fatima Hassan from the AIDS Law Project about medical aid schemes and particularly the case against Old Mutual. The episode also addressed the differences between HIV and AIDS.

Mercy Makhalemele: Hi, hu Mercy Makhalemele okhulumayo {isiZulu} [I’m Mercy Makhalemele].

Sipho Nhlapo: Hi, I’m Sipho Nhlapo, welcome back to Beat It! – your guide to better living with HIV and AIDS.

Mercy Makhalemele: Inqobe [Beat It!] belongs to all positive people that presents information that will help all of us to live better with the virus. {isiZulu}

Sipho Nhlapo: We are living in a positive world; that’s were the T-shirts come in.

Mercy Makhalemele: In this addition we bring you a Special Report on the standard available to HIV positive people in government hospitals and clinics. Nje ngasona lesi isibhedlela {isiZulu} [Just like this hospital].

Sipho Nhlapo: One of the main reasons that people in overseas live so much longer with HIV is that they get with each and every infection that occurs proper treated.

Mercy Makhalemele: And they are still many doctors out there bakithi [my people] who do not know how to treat HIV infection. Hisimanga lesi [It’s shocking], we all heard stories about hospitals being in a crisis but how does this crisis affect the people who are living with HIV. {isiZulu}

Sipho Nhlapo: The Beat It! team spoke to healthcare providers and HIV positive people in Gauteng, Mpumalanga, KwaZulu Natal and the Eastern Cape and filed this report on the conditions on health services for HIV positive people.

Special Report - South Africa's Healthcare system

Dr Basil Xhosa (General Practitioner at Maphuta Malatji Hospital): When you have AIDS people take it like it’s finished, you are just waiting for the day to die.

Narrator: Many people believe that being HIV positive is a death sentence, this is not true if you are living with HIV you can easily live 14 years or more if you take good care of yourself follow a healthy diet and get treatment for your diseases. But because an HIV person immune system is vulnerable it’s vital that you obtain quick and effective treatment when you become ill.

Prof. Vinodh Gathiram (Head of Infectious Diseases, University of Natal): It’s important for them to do this because every little infection that they get makes the disease to progress a little bit faster.

Narrator: People with HIV will eventually get opportunist infections. You get these infections because your immune system is already weakened. Certain opportunistic infections such as TB and Pneumonia can be prevented if you take prophylaxis; that means medicine that can prevent you from getting these infections in the first place.

Dr Niel Malan (HIV/AIDS Treater): I am of the opinion that tuberculosis and pneumocystis pneumonia is responsible for 65% of the death in the Eastern Cape.

Narrator: Opportunistic infections can be treated in people living with HIV.

Dr Alison Russell (Chris Hani Baragwanath Hospital): We have access to most of the medicines we need to treat the opportunistic infections. We can treat, obviously, tuberculosis and we can investigate for a difficult presentation of tuberculosis, we can treat cryptococcus which is the cause of a very awful meningitis.

Narrator: Apart from pro longing your life, early treatment of opportunistic diseases will also save government money.

Dr Merika Tsitsi (Physician at Lesedi Clinic and Tembisa Hospital): If you catch them early there is no doubt, by avoiding hospital admission of those patients by treating your opportunistic infections early, you will be able to reduce the amount of money spent by admitting that patient.

Narrator: However many patients and doctors are still ignorant about HIV. They believe that if a person is HIV positive it is a waste of money to treat them, because they are suffering from incurable diseases.

Dr Niel Malan: They are some of the doctors they still think when somebody presented with an HIV positive test this is the end. And I even in the last month had patient who came here, they said to me the doctor said to them you’ve got six month to live , you are HIV positive and be prepared to die.

Narrator: Other doctors know the diseases can be cured, but still don’t treat patients properly.

Dr Merika Tsitsi: Yes, you find that patients are not treated properly because people, because of costs, sometimes because people adopt an attitude that this patient is terminal or has HIV and therefore it’s not worth using the expensive medications in terms of treating that patient.

Margaret Bush (Housewife): He came up to her and he said what is the problem? I just said she had this things in her mouth, we were hoping something can be done to help. He took one look at her, at Doreen, MacZille(?), her facial dentist said to her, he sees a lot of this, there is absolutely nothing that we can do in her case.

Dr Cindy Firnhaber (Researcher at the HIV Research Unit of the University of the Witwatersrand): I’ve heard patients turned away in the emergency room, casualties when they found out that they are HIV positive and things like that.

Thanduxolo Doro (Person Living with HIV): Treatment is inaccessible and when I’m talking about treatment I’m not talking about the AZT’s, the antiretroviral drugs, the treatment combination no, I’m taking about treatment that any person might get.

Narrator: Those in government positions refuse Thanduxolo’s claims that patients who are HIV positive are treated just the same as other patients.

Dr Zweli Mkhize (Minister of Health, KwaZulu Natal): Our approach policy is that we will deal with them and that no one will be turned back because he’s HIV positive.

Dr Mamisa Chhabula (Director of Health Services, Western District Council of the Eastern Cape): Even if a person is HIV/AIDS positive if he’s got an infection, that infection has to be treated.

Narrator: Yet neither of their Departments provide prophylaxis; the medicine that can prevent the onset of opportunistic diseases and allow people to live longer and healthier lives.

Dr Zweli Mkhize: We were not yet giving standardised prophylaxis for treatment for TB, for opportunistic infection you know, pneumonias and so on we are not using any prophylaxis at this stage.

Narrator: In some hospitals were such preventative is given and opportunistic infections are treated, doctors struggle to get enough drugs to treat diseases.

Dr Cindy Firnhaber (Researcher at the HIV Research Unit of the University of the Witwatersrand): Bactrim is a cheap drug that can prevent PCP pneumonia in a HIV patient and I know many clinics; not many, I know of several clinics that are struggling to keep bactrim available for their patients.

Dr Sandile Mfenyana (Chief Executive Officer of Tembisa Hospital): We don’t have enough drugs to treat the infections at all because in a large extent the numbers are increasing faster than allocated budget and the budgets are estimated at on old statistics.

Narrator: At the moment it seems that the treatment for HIV patients depends on the attitude of the doctors and nurses.

Thanduxolo Doro: There is a very isolated incidence were people with HIV are really treated for the opportunistic diseases.

Mkhululi Dick: I was having the shingles is not long time ago I think last month. I did go to one of the clinics here the doctor just said to me: “No we can’t do anything about this” and I told him that I’m HIV positive and he said: “No I know that this system is for people who are HIV positive, so I cant do anything I’m just going to give you tablets.”

Thanduxolo Doro: Even an HIV positive person haven’t got systems but he’s sick and goes to the hospital his encourage to disclosed to the doctor or healthcare worker but the experience that when this person disclose is fine on the first day, but the second time he comes for treatment his reminded that: “Now remember you are HIV positive, so there is no use of you coming here when you feel something because AIDS has no cure.”

Mkhululi Dick: Lawrence referred me to Doctor Malan. Doctor Malan is just working with people who are HIV positive here in Port Elizabeth and he gave me an injection 24 hours after I get the injection and the shingle disappeared.

Dr Merika Tsitsi: You do find some areas in the public sector were doctors have no interest in HIV, were HIV as a diseases is not, the teaching about HIV they have not be adequate. And you might find that there is a need in certain areas for continuing medical education in terms of how you treat HIV, how you treat opportunistic infections.

Narrator: Because patients are treated inconsistently many doctors feel there is an urgent protocol for HIV patients. A treatment protocol is a specific set of guidelines that doctors must follow when they treat patients.

Dr Alison Muggleston (Medical Officer, Witkoppen Health and Welfare Centre): I think in certain clinics the staffs aren’t simply well enough trained in HIV. They haven’t overcome their fear dealing with HIV and unless they are actually obliged to adhere to protocol on how to treat patients with HIV, they will prefer to ignore the problem, I don’t think ignoring the… of HIV is they way to cope with it at the moment.

Dr Neil Malan: My experience is that in the state sector especially with more serious and immediate life threatening opportunistic infections no treatment is given.

Desiree Booysen (Treatment Action Campaign, KwaZulu Natal): Because they have already put a life span, they have already given you a time. They are playing god with people here in KwaZulu Natal. The doctors if they feel that you don’t deserve oxygen, they will they will practice …… it was done to me and a patient.

Dr Ian Sanne (Head Of the HIV Research of the University of the Witwatersrand): We also experienced often we’ve also have interaction with the Gauteng Provincial Authorities in making guideline for the treatment of HIV in attempt to develop primary healthcare and secondary healthcare. We have submitted theses guidelines and this were not accepted or were not responded too.

Narrator: Even in KwaZulu Natal the epidemic is at its worst there are still no guidelines available for the treatment of HIV/AIDS.

Dr Zweli Mkhize: Well for HIV and AIDS treatment we don’t have a standing protocol which is the standard through out the province, we are working on that, but most of the basic opportunistic infections treatable with the kind of medication which is available on our essential drug list and therefore it doesn’t require any special, you know, protocol as it were.

Prof. Vinodh Gathiram: The problem is that the hospital has a budget, we have to decide at this stage what we can treat and what we can’t treat and for that nobody has made a decision and the best we can do as clinicians is to provide some guideline that will help politicians to decide so we need some political guidance and assistance on which level are they going to stop.

Narrator: The decision whether to stop or continue treatment is left to individual doctors. The doctor might think it is the patients own fault for contracting the virus and decide not to treat him or her. Maybe the doctor feels it is not worth wasting the medicine on a patient who’s going to die anyway. The doctor might discharge an ill patient to homecare for the shortage of beds, when a patient would have been better cared for in the hospital. All this things are still going on in the hospital, clear guidelines need to be laid down by the government to prevent this.

Dr Ian Sanne: Because they are undecided about which way to turn, they are in fact losing enormous amount of ground and a decision to implement policy that is not perfect will be much better than not implementing anything at all.

Narrator: Because of inadequacies AIDS people go to traditional healers in search of help.

Mthole Makhathini (Traditional Healer): Iyakusiza imphela ngoba iyasishaya singaka kudli, kodwa masise sikudle kakhulu ayisakusizi. [My medicine really helps you because it destroys it (the virus) if it is not advanced. But when it is advanced it won’t help you at all.] {isiZulu}

Narrator: At least Mr Makhathini still advices his customers to wear condoms, so that the virus that he claimed has been cured does not return. Unlike traditional doctors he advices he’s clients to go to the western doctor as well. Other traditional healers only send patients back when it’s too late.

Sister Violet Ramalapa (Infection Control, Tembisa Hospital): The person will come with the CD4 which is still alright but after going to the traditional healers the person comes back with full blown AIDS. Now most of them dies but they still go to traditional healers.

Dr Basil Xhosa (General Practitioner at Maphuta Malatji Hospital): The traditional healers end up with our patients because we don’t promise them any treatment. They now that the doctors are not going to do anything so I must keep trying. Today is the traditional leader, the next day is the priest who prays for me and the next day is somebody else. And everybody keeps chanting I can manage, I can manage. Unfortunately at the end of the day they end up coming back to the hospital and we see the last of the HIV person, when they come to die at the hospital.

Mercy Makhalemele: Uyazi Sipho ngicabanga ukuthi {isiZulu} [You know I’m thinking that] Sipho it is really a good idea that they should be proper standard to be set by the government for proper treatment of the diseases caused by HIV.

Sipho Nhlapo: Then we will know what treatment we should be getting and healthcare workers won’t be able to discriminate against HIV people.

Mercy Makhalemele: Bakithi I Beat It! iyahlasela. {isiZulu} [My people Beat It! is attacking.] Here we are outside Parliament doing some research for our new series on human rights for people living with HIV and AIDS.

Sipho Nhlapo: The first programme looks at our rights at work and asks whether the employer has the right to force someone to be tested or to refuse employee benefits to a positive person.

Mercy Makhalemele: And uFaghmeda uzoba akhuluma no [Faghmeda is going to talk to] Doctor Steve Andrews about the different stage about HIV/AIDS illnesses.

Treatment Literacy

Faghmeda Miller: Hi, doctor I think I have more questions to ask you today. Well by now we know that you can live for a very long time if you have HIV positive, by living positively, eating health, you know just living a basic lifestyle. But what I would like to know is what are the stages of HIV really?

Dr Steve Andrews: Faghmeda, HIV disease is a continuous, by this I mean that people who are HIV infected go through a number of stages while they are sick. We can think of this in term of early illness, mid stage illness and late stage illness. There are different ways of classifying this but one of the easy ways is to look at the person’s immune system. This is the strength of the body to fight of diseases and we measure this by something called CD4 count in the very early stage of the illness the CD4 count is high and as the illness progress the CD4 count drops lower and lower until once it falls below the level that the body can no longer defend itself a point were we say the CD4 count is below 200 the person develops late stage illness and AIDS.

Faghmeda Miller: I have lost a lot of weight and I had diarrhoea you know appearing the whole time but what I would like to know, what other symptoms that one can get when you are HIV positive?

Dr Steve Andrews: It is thought about 15 % of people when they first get infected by HIV will present with what we call are zero conversion illnesses within one to eight weeks following infection, this often presents as a flu like illness.

Faghmeda Miller: What can one expect besides having normal flu symptoms?

Dr Steve Andrews: In the early stage of HIV infection, by which I mean the first few years after infection, people may experience anything at all, this however doesn’t mean that they are not HIV infected in fact the HIV is doing its thing using up valuable body resources while the person may feel nothing. They may however feel quiet fatigued, they may…can get skin rashes and they may get large glands.

Faghmeda Miller: In the first few months of infection is it possible that you can infect your partner as well?

Dr Steve Andrews: In the early stages the viral load or the amount of HIV in the blood can be extremely high. This means that you may be very infectious to your partner. It is important if you are uncertain about your HIV status of your partner always to use a condom.

Faghmeda Miller: Doctor tell me what will happen if both partners are HIV positive and they are not using any protection at all?

Dr Steve Andrews: Even if your are involved in a relationship were both partners are known to be HIV positive it is important to realise that you can be re-infected with the virus. What this means is that someone who is HIV positive can pass the virus again to someone who is HIV positive and this speeds up the destruction of the system that defends the body from diseases. That is why it’s important to practice safer sex techniques even in the relationship were both partners are HIV infected.

Human Rights - Medical Aid Schemes

Zanele (Excluded from Old Mutual medical aid scheme): When I got this permanent position with Old Mutual, I had to go for a medical examination and we thought there will be deductions in our medical aid scheme because it was compulsory to fall or to be registered under the medical aid scheme and there was no deductions and I query mine, they said I need to hang in there and then a day after that somebody phoned me form HR and said I need to contact my doctor. He gave me the test results that I was HIV positive, I was very shocked.

Fatima Hassan (Legal Counsel, AIDS Law Project): We are suing the Old Mutual on behalf of one of our clients, she was excluded from three out of four employee benefit schemes, simply because of her HIV status.

Zanele: I did ask the doctor what if I don’t go for this test because to me that was a total discrimination. He said to me you have a right to say no but then you will automatically not qualify for the other schemes.

Fatima Hassan: Our client was given a letter of appointment and they request her to attend a medical examination and all that she was asked to sign in respect of the HIV test was a standard LOA consent form which did not include any form of pre test or counselling, in fact when she told Old Mutual she may require post test counselling she was told that because you have a family doctor we can not assist you with post test counselling your family doctor should do the counselling.

Zanele: I asked the reasons that why I can not belong to their medical aid scheme and they say they believe is that I’m going to abuse because I will need expensive medication and I will be hospitalised more often and that made me even feel worse. I knew that I was not going to die, it wasn’t a death sentence or something like that. I’m fine, am even fine now so I didn’t understand why? I spoke to a lady from NAPWA she gave me a telephone number to contact the AIDS Law Project which fights against discrimination of people living with HIV.

Fatima Hassan: Well in this particular case what occurred we saw the Old Mutual not the three funds independently simply because they are in-house schemes and we feel Old Mutual exercises direct and important control over the schemes and substantial power in the sense that Old Mutual can change the rules of the schemes if they want too. The matter did proceed to the CCMA which is the Commission for Conciliation, Mediation and Arbitration and Old Mutual raised the point they were not the correct party to sue instead we should be suing the party independently. However the CCMA ruled in our favour and that is a landmark decision in that there are in-house schemes and where employees don’t have an option of joining other schemes other than those offered by the employer, the employer is responsible for the benefits that he provides and does exercise direct control of the schemes and we are therefore to continue the case against Old Mutual and not bring separate actions against each of the three funds that excluded our client

Zanele: I wasn’t sure whether anybody knew that I was living with HIV at work because if management know and I don’t belong to their medical aid scheme somebody will find out easily my colleagues will chat about medical and I will have nothing to say about it. So I wasn’t sure if there was enough confidentially in the company and it did affect my performance. There was times that I was stressed out, not the type of job that I was doing I’ve worked in the call centre for the last five years but because of the treatment. I didn’t know who to be angry with so each and every member of management I come across I will be very angry with them.

Fatima Hassan: Whereas before there were certain grounds on which you could not unfairly discriminate, the legislature has included the HIV status as a ground you can not unfairly discriminate on and that is provided for in the Employment Equity Act. The reason why we had to go the route of the Labour Relations Act in the Old Mutual case is because the Employment Equity Act only came into effect only on 9 August 1999 that is the section dealing with HIV/AIDS which means as of 9 August 1999 any employer who wishes to conduct testing will have to get appropriate permission from the labour court.

Zanele: And those individuals out there at the building who are HIV positive must also stand up and do something about it. It is illegal.

Fatima Hassan: There are a large number of medical aid schemes in this country who are now providing reasonable HIV cover. The new Medical Schemes Act actually compels all medical aid schemes in this country to accept members who are HIV positive and to at least provide them with a prescribed minimum benefits.

Zanele: I will continue my fight with Old Mutual until I win because I want the right of everyone who is HIV positive not to be neglected.

Mercy Makhalemele: Bakithi ekhaya {isiZulu} [My people at home] I did know that your employer cannot exclude you from medical aid and other benefits when you are positive.

Sipho Nhlapo: After a few companies are taken to court I’m sure things are going to charge.

Mercy Makhalemele: Isikhathi engisithandayo ke mine sesibiza umfowethu uMarc {isiZulu} [This time I like because we call our brother Marc] to present this week’s Red Noose and Positive Person Award.

Sipho Nhlapo: If you are watching this programme for the first time. We are giving the Red Noose to someone who has been making life hard for positive people.

Mercy Makhalemele: And the Positive Person Award goes to someone who has had something positive to contribute. So hear goes Marc.

Positive Person and Red Noose Awards

Marc Lottering: The most important thing for anyone living with HIV is to get quality treatment from their caregivers; that’s new SA speak for doctors nê. Now the stalest joke in the world goes about the doctor says just for any complaint take two Panados and call me in the morning. And this is just what many caregivers are telling HIV positive people. No one should be getting PCP pneumonia because we should be medicating with Bactrim to prevent it, no one should be developing complications from any diseases because hospitals do not have clear guidelines on what drugs they should be using. So this week the Noose goes to all those doctors and hospital administration and bureaucrats who have the attitude: “Oh well they are going to die anyway, why bother to treat them properly.” So specifically for you this week try this medicine. And now on to healthier stuff a Positive Person Award. We all love David and Goliath stories nê? Small guy taken on the system, so this week the Positive Person Award must go to you Zanele for having the guts to take on Old Mutual, you have scored an enormous victory for all HIV people by showing that big companies are responsible for the rules in-house medical aid and other benefits even if they claim that these funds are independent, it is the courage of HIV positive people like you that will beat it.

Sipho Nhlapo: So far that’s all we have time for this week.

Mercy Makalemele: If you want to obtain a copy of Beat It! please contact us on the numbers given below.

Sipho Nhalpo: See you next week on Beat It! have a positive week and remember together we can Beat It!

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