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Beat It! 2002 Episode 9

In this episode of Beat It! the Team exposed how funeral insurance companies discriminated against men and women who had passed away because of AIDS, placing additional strain on their bereaved families. Dr Nombulelo looked at the impact STDs can have in a positive person’s life. The Support Group discussed ARVs in their lives and the side effects they encountered.

Nombeko Mpongo: Hi, welcome to Beat It! your guide to better living with HIV and AIDS. I am Nombeko Mpongo.

Vuyani Jacobs: And I’m Vuyani Jacobs. Coming up in this week’s program…

Nombeko Mpongo: The Support Group wraps up the discussion on ARVs by sharing experiences on the topic of side effects and the importance of proper monitoring.

Vuyani Jacobs: Dr Nombulelo is back with us to talk about STDs and HIV.

Nombeko Mpongo: And our Special Report exposes what is going on with funeral insurance policies where many families are finding that they are being denied benefits, when the company finds out that their loved one died of AIDS.

Vuyani Jacobs: That’s tragic. But first let’s go to the Support Group and hear what Faghmeda and the others have to tell us.

Faghmeda Miller - ARVs and their potential side-effects

Faghmeda Miller: When I first started with my antiretrovirals, I had no side effects at all and I was like, very happy. But I had to stay on it for about two or three years and all of sudden I started to get side effects. I had like a tingling sensation in my left arm and the doctor then said no, I must stop that now because my body is now used to it. I need to go on some other medication. And I was very happy, when I started this medication I told all my friends that you know the doctor changed my medication and this is what I’m going to use now. But my happiness didn’t last very long because what happened the first few days after starting with my new medication I suddenly became very ill. I was very tired and I started bleeding severely. And also what happened, I was very lame, if I wanted to touch my face my hand would go in a different direction. And I didn’t know what was really going on here. And I went back to my doctor and I explained to him my side effects which I had. It’s almost like when I take my medication, I want to vomit all the time, it’s like my body is not really accepting the medication and I really feel tired of taking it.

Dr Steve Andrews: If we stop the medication, we are going to see your viral load increase and your CD4 count come down. But we’re also not in a country where we have options of saying let’s stop medication and then the state or some other funder will pay for them. And that does cause a very difficult situation. It’s my opinion that your symptoms are not being caused by your drugs chemically. I think that a lot of what you experienced, maybe being caused because every time you take your pills they remind you you’re HIV positive.

Faghmeda Miller: When he explained to me the necessity of being on medication and why I should stay on it, I decided then, I’m going to stay on my medication and stick out the side effects. I must say now, about few weeks later, I feel so much better and I’m actually glad that I decided I’m going to stay on the antiretrovirals because I feel very healthy again.

Beat It! Support Group

Anthony Fernandes: I remember I found out about my status. You know I knew the very first thing was to get medication. There’s something called a trial drug where basically you are a test bunny. You go on these drugs, you get it for free, there’s a certain contract that goes with it and I thought it was a great deal, it can’t get better than that. Well let me tell you, nothing prepared me for what I experienced when it came to the side effects and I felt a bit funny in the beginning because I experienced, which felt like every single side effect you can possibly get at the time. And what made things really worse was dealing with the fact that I just found out I was HIV positive. Depression really started coming in as well and so it was kind of fighting a double battle.

Mathew Damane: And bakhona abantu abano-reacta kwi drugs bakhona abangeno-reactileyo. Exactly lonto yenzekile bakhona aba-reactileyo, unlike mna nda-reacta. Abanye abantu zange ba-reacte, njalo njalo. So into ebalulekileyo ku-monitorishiwa ngugqirha wakho xa uthe wakwezi drugs, ungazityeli ii-drugs nje ungajongwanga nojongwa noba kuqhubeka ntoni emzimbheni wakho. Each and every time ubane-problem kwi-drugs kubalulekile uze kugqirha wakho u-reporte uthi ngoku kwenzeka into ethile ngoluhlobo ne then ii-drugs, ii-side effects ezenzekayo ziyalawuleka, oogqirha bayakwazi uzilawula, bayakwazi uba babone ukuthi mabathini. It’s either bayakutshintsha okanye mhlawumbi bakunike lonto i-stope lonto mhlawumbi ibangela kwenzeke lonto. Yiyo lonto ke kubalulekileyo ukuthi ke ubenomntu okukhathaleleyo xa ukwezi- drugs. {IsiXhosa} [Some people react to the drugs and some people don’t, as it happened with me who didn’t react when others did. What is important in all this is to be monitored by your doctor when you are on drugs and not just keep on taking medication. Each time you have a problem with the drugs, you must come back to your doctor and tell him/her what’s going on. Then the side effects that crop up can be controlled. Doctors know; they either change your drug or they give you something to stop the effect. That is why it’s important that there be someone who cares for you when you are on these drugs.]

Anthony Fernandes: What really started getting to me and I think what wanted me to give up eventually was that it lasts for three months and it was a long time where you looked really ugly, you felt ugly. I felt like an AIDS person who lives with AIDS and I felt like I was standing out and I thought there’s got to be a way for these things going away now. And to take this for the rest of my life, I thought it’s going to kill me if nothing else. After three months my energy levels were back, my rashes were completely gone, my CD4 count jumped up to about 600, which was great and higher each time I went in to check up. Side effect is something that does go away eventually and it’s just something you have to push through and it’s part of the fight. And it was in the beginning of the three months and I don’t look back on it for one second now other than that experience I had and I say that’s part of it. And look at me now, gorgeous.

Nontsikelelo Zwedala: Ndabanazo i-side effects kodwa ke nazo zaphinda zakwazi uku-monitorisheka nje kugqirha. Ngoba ndabane-liver toxicity. So kuthe after two to three months ndabane liver toxicity. Mna zange ndiyiqaphele ngokwam, yaqatshelwa ngugqirha kwi-blood test awayeyenzile. Kufuneka ndiyeke i-Nevirapine okweveki eyi-one then xa ndiphinda ndisiya, wathi mandiyithathe kwi-small dose ibeyi-one i-pill a day. Aph’ekuhambeni kwethuba, iphinde yenyuka i-viral load yangu-90 then xa ndibuza kugqirha why inyukile i-viral load and i-CD4 count yehlile ingu-37. Wathi kungoba okokuqala ndaqala late. I-most yabantu abaqale kwesi-stage bendikuso abadli ngofika kula undetectable and okwesibini lonto ingayenza nanto yokuba kulanto ba bendikhe-ndaskipa i-doses ezithile like laveki bendiyeke i-Nevirapine, nalaveki ndandithatha i-small doses. So lonto leyo izokwenza ndibe resistant kwi-Nevirapine but izothatha ithuba uba i-viral load inyuke but izawunyuka yon aide ifune uba nditshintshwe kule-regimen ndikuyo ndifakwe kwenye i-regimen. {IsiXhosa} [I did have side effects, but they were soon monitored by my doctor, because I had a liver toxicity. After two to three months, I had this liver toxicity. I didn’t notice it but my doctor saw it after testing my blood. Then I had to stop taking Nevirapine for one week. When I returned she told me to take it in small doses, one tablet a day. As time went on, my viral load went up again by 90. When I asked my doctor why my viral load had gone up and my CD4 count had dropped to 137, she told me it was because I started late. Most of the people who had started at my stage, their viral load does not reach undetectable levels. And secondly, that can be caused by the fact that I skipped some weeks. Like the week I stopped taking Nevirapine and when I took Nevirapine in small doses. Therefore, it can cause me to be resistant to Nevirapine. It would take time for my viral load to go up, but it would until such time that I would have to change my regimen.]

Bongiwe Mkhutyukelwa: Like ndandi-attenda i-support group e-Site B and then saxelelwa uba kkukho aba-doctor base-America bafuna abantu abazongena kwi-treatment ye-HIV/AIDS. Babefuna abantu abayi-five egroupini yam and I was among those five. So ndandizixelele uba this is the only choice endinayo ndifumane ezi-drugs since zi-expensive. Then ndahamba ke kwayokwenziwa ezo-blood samples. Ok zabuya ii-results kwathiwa ndiya-qualifya ke. Ndaxelelwa ke uba i-CD4 count yam ithi 500, iviral load yayisithi 14 000. So ndavuya ke kuba ndizongena kwi-treatment and ndaqalisa ngale-treatment. Kwi-first week yam ndandi-experiensa iiheadaches, nokuba-dizzy, nokuba-weak. But ndathi xa ndiyi-reporta kugqirha wam wathi hayi yinto e-normal leyo, mandiqhubeke netreatment le ndiyithathayo. Kuthe ngo-year 2001 late, nda-experiensa i-side effects ezi-very severe. Ndandine joint pains, ndine-diarrhoea like kubenzima ukuhamba. So I had to discontinue ukyithatha because i-dangerous if ndizoqhubeka ndiyithatha even thoughndine-side effects. Kwaba buhlungu kum because ndandisendizixelele uba njeg’ba ndikwi-treatment nje it’s the only way ndinga kwi-treatment. Yababuhlungu intliziyo yam kang’ba ndandikhala kulagqirha. Ndazixelela uba it is the end of my life. {IsiXhosa} [I attended a support group at Site B and we were told there were doctors form the USA looking for people who would undergo treatment for HIV/AIDS. They wanted five people from my group. Then I was among those five. I told myself that was the one choice I had to access the drugs, since they are expensive. I then went for the blood samples. I was told I qualified with the results. My CD4 count was 500 and my viral load was 14 000. I was glad to be accommodated and I started treatment. During my first week I experienced headaches, dizziness and weakness. When I reported it to my doctor, she told me it was normal, I must go on with the treatment. In late 2001, I experienced severe side effects. I had joint pains, diarrhoea and it was difficult to walk. I had to stop taking it because it was dangerous to continue while I had side effects. It was sad because I had told myself this was the only way I could access treatment. My heart was so sore, I was weeping at the doctor’s room. I told myself this was the end of my life.]

Anthony Fernandes: I think I started a bit too early on my meds as well. I didn’t quite fit the criteria. I think it’s important for us people who live with HIV and AIDS, we monitor ourselves through our doctors as well you know, we can still fight this disease with good nutrition and a healthy lifestyle and positive living. But not to wait too long either because we don’t want to be open for infections but to say a CD4 count of 200 is a good time to consider going on medication. And that we should know these things.

Bongiwe Mkhutyukelwa: Like mina if ngangazi, ngangifundile kabanzi nge-CD4 count ne-viral load, ngengingaze ngiyithathe i-treatment kusa-early ngolahlobo. Njengoba seng’shilo ukuthi ngaqalilse uthathami-treatment i-CD4 count yam yayingu 500, lonto ecacisa ukuthi amajoni am omzimba awese-fit, awesakwazi ukuzilwela. Ngiyaniwarnisha guys, ningaqali kuse-early and ningalindi kuze kube late. Kubalulekile umuntu alokho e-monitorisha i-CD4 count yakhe kuze asazi is’khathi soqalisa nes’khathi songaqalisi i-treatment. {IsiXhosa} [If I had been well informed about CD4 count and viral load, I would not have taken treatment so early. As I said, I started treatment when my CD4 count was 500. That explains that my immune system could still fight for itself. I warn you guys no to start too early or too late. It’s important to monitor your CD4 count, so that you can know when to start or not.]

Prudence Mabele: Living with HIV for ten years has made me feel very guilty in terms of I’ve been asked questions like why are you waiting and why are you not taking medication even if it’s a trial. And the biggest problem also has been the fact that I’ve been checking my cell count and it has been 400, 450 or 500, it’s been going up and down between those numbers. And a major problem was, I’m always saying I’m waiting for it to get lower so that I can start the medication. Though I’m still living a healthy lifestyle, sleeping a lot, eating, relaxing and you know taking vitamins and homeopath and aromatherapy but it worries me and I always check when is the right time.

Faghmeda Miller: Bongi, wile k net sê vir my lyk jy baie gesond en jy het gesê jy is nie op enige medikasie. Is jy vitamiene en watter sort is jy op? {Afrikaans} [Bongi you look very healthy. And you said that you’re not on any medication. Are you taking vitamins and which ones?]

Bongiwe Mkhutyukelwa: I’m not taking any treatment. It’s only that I’m taking multivitamin tablets and B-co and that my CD4 count is monitored every month. I’m getting these vitamin tablets from the MSF doctors but in the past we used to get these in the government hospitals but now you don’t get them anymore. I think something should be done so that everyone can get these vitamin tablets. Can you please explain to me how these MSF drugs differ from the clinical trials?

Vuyani Jacobs: Clinical trials are experimental that means it’s an experimentation of drugs on people. It’s actually something else then the pilot site that is in Khayelitsha that me and Mathew and other actually are on. That pilot site, those drugs are registered you can even go and buy it at the private sector, you can still find it. And it’s actually a nice setting because it happens in Khayelitsha, it happens in a very poor setting and the social conditions is not that good yet it works quite well, it makes us feel good, it makes people talk about HIV, it makes people have more health within themselves and to walk more. I think this kind of pilot site is supposed to be everywhere, it should be where people are. Because it brings back people’s lives, it actually even puts out the stigma.

Nontsikelelo Zwedala: These antiretrovirals are not meant only for rich people, they are meant for even poor people because I am poor and I’m living in a shack in Phillipi and there is no water, there are no toilets, there’s no proper housing but I’m managing to use the antiretrovirals.

Nombeko Mpongo: You’re back with Beat It! So ARVs do have side effects but they can be monitored and managed.

Vuyani Jacobs: And nurses and doctors can be trained in proper use of ARVs.

Nombeko Mpongo: Up next, Doctor Nombulelo talks to us about the link between sexually transmitted diseases and HIV.

Vuyani Jacobs: I hope she’s not going to show us any terrible medical pictures.

Nombeko Mpongo: Let’s have a look.

Dr Nombulelo Madala's consulting room

Dr Nombulelo Madala: Hello again at home, this is Doctor Nombulelo, your HIV/AIDS community doctor. HIV is a sexually transmitted disease or STD which has caught the interest of most of us because it has, it is different, it doesn’t have a quick cure. But there are other older sexually transmitted diseases or STDs. These usually present as a discharge in a woman’s vagina or a man’s penis, an ulcer around the woman’s vagina or a man’s penis, for example herpes, genital warts, pubic lice or syphilis. It is important to know that a person can be asymptomatic, show no symptoms although they have a sexually transmitted disease. When a HIV positive person catches a sexually transmitted disease, the body automatically produces immune cells to try and fight the sexually transmitted disease. But what this does is to make more available cells to be available in the blood for HIV to get into and multiply and kill the cells. This means high levels of virus in the HIV positive person’s blood and in other body fluids like semen or vaginal fluids. And also if they have a sexually transmitted disease at the same time, you’ll find that the vaginal discharge or the penal discharge will have a lot of immune cells with the HI virus in them or the fluid in the ulcer will have a lot of HI virus inside it. But if a person seeks treatment early then it means that the treatment starts working early and there won’t be enough time for the immune system to produce such cells with an increased chance of HIV sitting inside them multiplying and also increasing the transmission to a sexual partner. Also if they use a condom and there’s the barrier whereby the sexual partner will be protected from both the sexually transmitted disease and HIV transmission. This is me Doctor Nombulelo signing off for today. Stay healthy until I see you next time.

Vuyani Jacobs: Kubalulekile uba u-treate iSTD msinya kuba yenza lula ukusuleleka yintsholongwana ugawulayo. {IsiXhosa} [It is important that to treat STD early because it makes the spread of HI virus easy.] You must take any STD to the clinic right away. Don’t waste time, just do it.

Nombeko Mpongo: And condomise at all times. Vuyani tell us more about this week’s Special Report.

Vuyani Jacobs: We were getting many reports about people who thought they were covered by funeral policies only to discover that the company didn’t want to pay out when they found out that the person had died of AIDS. This is unfair discrimination against positive people and their families. So we went to investigate.

Special Report - Funeral Policies and HIV discrimination

Mark Heywood: Sarah was a TAC activist, a very brave woman. We first met her in the middle of 2001 when she was very sick with AIDS. Tragically Sarah died in April of this year. And discrimination, if you like, followed her even past her death. Sarah was a member of something called AVBOB which is essentially a company which sells funeral policies and a company which targets poor people and black people predominantly. And people pay a monthly premium, usually about R50. I think in Sarah’s case it was R50 and if that person dies, the company pays the costs of the funeral; they pay the costs of the coffin and so on. What the company doesn’t explain properly to people is that if you die of AIDS or if the company thinks you have died of AIDS then they will not pay out on the funeral benefit.

Emily Hlalele (Sarah’s mother): [When we went there on Wednesday, the gentleman told us that my daughter had not finished the six months probation period. Therefore, they would not pay out for the burial. He asked us what was wrong with the deceased and we told him. He said they do not bury a person who died of HIV after six months, but after three years. They then said if she had been knocked by a car in six months, they would bury her, not death through sickness, because my son made her join because she was sick.]

Dr Hermann Reuter (MSF, Doctors Without Borders, Khayelitsha): Well each policy is different that’s why one can’t advise the patient in general. Some policies pay out for people living with HIV, some policies say only if you get diagnosed after taking out the policy. A lot of policies put in a clause like six months after you’ve taken out the policy you may not fall sick with HIV. For me the whole concept is wrong. That somebody whose got an illness get discriminated against because of a specific illness. For me, everybody, if they take on a policy it’s because there’s a risk of dying and whether they die of a car accident or pneumonia or a heart attack, I think the policy should treat it equally.

Emily Hlalele (Sarah’s Mother): [They did not deliver the corpse. On

Friday, when we were expecting them, they didn’t come. On Saturday morning, which was the day, we took money to beg them to at least release the body. We took R5000, and they told us to give them R4700 and something then they can get the body for burial.]

Mark Heywood (AIDS Law Project): After Sarah’s death, there was an attempt to get cover to cover the costs of the funeral and so on, and the company to this day has not actually paid that money over. After you die, your body is impounded, if you know what I mean. The company almost comes and takes the body, an AVBOB undertaker takes the body. And to get that body back, you have to pay the costs of the undertaker, you have to pay the costs of the coffin and so on. You almost have to buy your own body back in order to be buried.

Pulenglea Mbele (Sarah’s friend): [What makes me sad about AVBOB is that when you join, you are not told that only people with certain sicknesses may join. They write up people. They want money in cash. They said she was young, she couldn’t just die. They wanted us to tell them, so we told them she had died of HIV. What surprised us was that Oupa had been member for eight months. We were shocked when they told us they weren’t paying out, they wanted cash. That made me very, very sad because we had made all the arrangements when they told us in the last minute. I would not encourage people to go there. Even if you join, you must speak and ask everything. You must not just sign up. They will disappoint you in the last minute because they don’t ask you what the condition of the person is.] {Sesotho}

Dr Hermann Reuter (MSF, Doctors Without Borders, Khayelitsha): The problem is confidentiality. We have introduced two death certificates now where the doctor fills in birth to first, basically say that the person died of a natural cause. Then there’s a second death certificate is used by the National Department of Health for statistical purposes on which the doctor writes the diagnosis of which the patient passed away, let’s say it was TB and then the doctor also fills in if there were additional problems where the doctor then writes in HIV. The second document after you fill it in, you put it in an envelope and you hand it with the public document to the family or to the undertaker and it is the responsibility of the undertaker to take that envelope to Home Affairs department because it’s a confidential document. A week later the insurance comes in and says they want to investigate the folder of the patient. Because they know the patient had HIV and they want to see what is the story, because they don’t want to pay out the policy. And it has happened to me, because I asked them how did you know the patient had HIV and they showed me a photo copy of that confidential report that I sent to Home Affairs. And I said where did you get this and the insurance company said we got it from the undertaker, which for me is a breach of confidentiality because I as a doctor was forced to write HIV on that second death certificate but the undertakers don’t treat it as a confidential document.

Vuyani Jacobs: The Beat It! team have tried for four weeks to secure an interview with AVBOB, they refuse to talk to us. We received an anonymous letter from AVBOB reading as follows: All clients found to be HIV positive, usually via LOA records, shall have his/her application for insurance declined by AVBOB. AVBOB used to have an AIDS exclusion clause that allowed the company not to honour any AIDS related claims. This clause was removed in January 2002 from the AVBOB policy, but still appears on all insurance applications currently being used by the sales representatives. The AVBOB policy contract issued to all new clients does not inform them of AVBOB’s stance on AIDS. It is for this reason that most people cannot accept or understand why their funeral claims are not paid out.

Mark Heywood (AIDS Law Project): This is wrong as far as we are concerned it is unlawful. We haven’t brought a case to court yet but it was our intention to try to challenge practices and try to argue these practices are unlawful and that in fact they are unconstitutional. It’s something that the AIDS Law Project is investigating.

Nombeko Mpongo: Beat It! couldn’t get a representative of the companies concerned to comment on air but we hope that they settle the claim of Sarah Hlalele’s family and stop discriminating against the families of people who die of AIDS.

Vuyani Jacobs: And that’s our show for this week, we hope you find it helpful. Please share your thoughts on the programme by contacting us on the numbers on your screen.

Nombeko Mpongo: We’ll be back with you next week on e and you can catch the repeat broadcast on Sundays at 11:30 in the morning. Till next week, remember together we can Beat It!

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