by Ricci Davis
Independent investigator Ricci Davis interviews Bright, a Ugandan man whose brother-in-law was diagnosed with AIDS, and the tragedy that ensued. Davis uncovers the confusion regarding believed rates of official “transmission,” a lack of HIV testing in AIDS cases, and the nature of illness called AIDS – i.e. malaria and endemic diseases of poverty, plus starvation, medical neglect, and suicide.
Question – Davis: Is it true that all families in Uganda have lost somebody to AIDS?
Answer – Bright: Not all families. Not all families, but most of them…like, uh…90% have at least lost somebody.
Davis: And do those families tend to be poor or…?
Bright: Poor? Yeah, especially those in the rural areas. But there are also… some rich people have also died.
Davis: Have you had a personal loss within your family…to someone with AIDS?
Bright: I lost a sister, I told you and my in-law, the husband to my sister. That was in 1999.
Davis: What happened exactly?Bright: To my sister or to the husband?
Bright: Well, the husband…he had a long illness for like…nine months. Then he died. That was 1997 by the time he died. So my sister died in ’99, two years later. He was a soldier. He was a soldier by rank of captain. So he met my sister when she was in senior one actually. She was still very young.
Davis: Were they both very young at the time?
Bright: Yeah, yeah.
Davis: And they remained together for many years?
Bright: Yeah, for many years. That was from 19…91. Because they had their first born 1992, who is in senor one now.
Davis: Yeah, so what do you think it was that made him sick?
Bright: Uh…It was AIDS. It was AIDS?
Davis: Did he get very sick on occasions?
Bright: Yeah, yeah, yeah. He would sometimes get malaria and…like for one week. But eventually…for the last nine months before he died he couldn’t even move from where hewas. He was hospitalised for four months. Then after four months they decided to take him home to his own place yeah.
Davis: Was malaria endemic in those places where he was working?
Bright: Not really. Yeah.
Davis: But had he suffered with malaria many times his life?
Bright: Very many times. Yeah. Very many times. Yeah.
Davis: Apparently when someone has had malaria many times in their life their immune systems don’t recover completely.
Bright: yeah, sometimes.
Davis: So what convinced you or anyone else involved that his malaria was caused by his sexual behaviour?
Bright: Uh, because by that time AIDS…when you could get malaria for a long time, a long illness then we could definitely presume that it was…it is AIDS. And actually he even showed all the symptoms.
Davis: The symptoms of?
Bright: Of AIDS.
Davis: And what are they?
Davis: What are they?
Bright: That was skin rash, he had a lot of diarrhoea. He vomited all the time.
Davis: Yeah and of which…
Bright: And he lost weight. Completely.
Davis: Yeah and which of those symptoms are not exclusive to malaria?
Bright: Malaria I don’t think you get skin rash. Not get skin rash and diarrhoea.
Text insert: Typical cause of skin rash in an African setting: Malnutrition (chronic states of vitamin deficiency, Especially vitamins B complex and A) Watery diarrhoea is commonly a bacterial infection due to E. coli, S. typhi, C. jejuni etc. These are common in people with another pre-existing illness such as malaria and malnutrition and even stress. Courtesy of Dr. P. Pendo – Mulago Hospital, Kampala
Davis: But is it possible that he could have had another bacterial infection?
Bright: No. It was AIDS.
Davis: Like TB?
Bright: No, it was AIDS. It was AIDS, yeah.
Davis: And you said he was sick…
Bright: Because we even tested the…one of the children.
Davis: Right. And what was the reason for that?
Bright: We wanted to find out. The cause of the death.
Davis: By testing one of the children?
Davis: But how could they have contracted it from each other?
Bright: From each other…from a child and father? Definitely when a man has AIDS, sometimes of course a woman gets and during the childbirth.
Davis: Sometimes, but that’s in only 25% of cases.
Bright: 25? They say it is uh…50%. That’s what they say…
Davis: That’s what they say. Either way. And what was the result of the test?
Bright: Ur…one of them tested negative another one was positive.
Bright: Yeah. It was funny. So I think the other percentage…never effected the first born. But the second born had.
Davis: The second one tested positive?
Davis: What age was the second child when it was tested?
Bright: Two years.
Davis: And was it tested only once?
Bright: No, three times. By that time…I took him to Rwanda. That’s where he was tested.
Davis: How has the child been?
Bright: Uh, it’s ok. Now in primary seven.
Davis: Right. And is he on any medication?
Bright: No. No.
Davis: Are the doctors recommending that he…
Bright: Yeah, he recommend, but after twelve years he would get medication.
Davis: After twelve years?
Bright: Yeah, yeah.
Davis: If a child has survived for twelve years why should it be deemed necessary to suddenly…
Bright: I don’t…he never gave us any reason. Yeah.
Davis: That’s a bit strange.
Bright: Yeah. That is a bit strange. I also told another doctor. He said he cannot interfere with another doctor’s recommendation.
Davis: Well, no, but to some point, but when somebody says…is predicting that after twelve years that somebody should start taking medication without even being…
Bright: It is funny. It is funny, We don’t know. We don’t know really.
Bright: Because I even…I’m not even staying with him. Actually he’s staying with…the sister to that doctor.
Davis: What happened to the father?
Bright: The father?
Davis: The father remained sick for nine months and was the father responding to malaria treatment?
Bright: No. It was pure AIDS Mr. Ricci. Because he showed every symptom.
Davis: But not everybody dies. Some people get better on their own. They change their diet. Umm, you know they’re treated with…
Bright: These days, but not in the ’90s. In the ’90s it was completely different. These days it is true, but in the ’90s and late ’80s…
Davis: And did he have any support from people in his community?
Davis: He didn’t?
Davis: Was he just expected to die?
Bright: Yeah, he was just expecting to die.
Bright: Yeah. He knew he would die anytime.
Davis: And was your sister looking after him?
Davis: And she was fine?
Bright: She was fine. Only that she was also worried that she would die anytime. That’s why she committed suicide.
Davis: She committed suicide?
Davis: After he’d been buried?
Davis: Since she was, by the sounds of it symptom free, she’d perhaps been traumatised by his death for a while…
Bright: Yeah, exactly. She was a bit traumatised, because…after the death of the husband she was not herself. She would do some strange things. Sometimes we would give her money, she refuses. She would refuse to eat.
Bright: Then, that I don’t need to eat, because I’m dying any time.
Davis: Ok. How old was she by this time?
Bright: She was Ur, by the time the husband died…just twenty years.
Bright: Yeah, she got married around 16 years of age.
Bright: So, she was around 20, 1997, yeah.
Davis: Do you think her condition came about, because she stigmatised herself?
Bright: Yeah, yeah, yeah. She would not eat at all.
Davis: She couldn’t eat?
Davis: She was just…
Bright: She would refuse adamantly. Stubbornly refusing to eat. She would tell us that she’s
dying any time. We would console her but she was inconsolable.
Text insert: By asking the following question I am not accepting that positive HIV lab test results are indicative of AIDS or infection with HIV. I ask because public perception normally deems positive results conclusive for imminent health deterioration and death.
Davis: Were either your husband or your sister tested?
Davis: Neither of them was tested?
Bright: Never, no.
Davis: So how can it be deemed conclusive that either of them died of so-called AIDS?
Bright: It’s because of the symptoms we saw. And when we tested one of the children definitely we knew that it was to do with the husband.
Davis: When the second child was first tested was child sick or had recently been sick?
Bright: He was sick already.
Davis: What age was the second child when it got sick?
Bright: I think it was born sick.
Davis: Is that… is that what you remember?
Davis: You said that the son was sick…
Bright: Yeah. And…and I think it was born sick or it was mother to child that during the time of birth.
Bright: Yeah, because there wasn’t an operation. It was a normal birth. So I think it was from mother to child.
Davis: And for how many years has the child been healthy?
Bright: Right now? Nine years. No, no, no, no, no. Eleven years.
Davis: And how do you account for that recovery in the absence of ARVs?
Bright: We don’t know, because the doctors told us that we would begin with ARVs after 12 years. He never gave us the reason. I’m not a medical doctor. So…we don’t know. And 0when we contacted another doctor he said he cannot interfere with another doctor’s recommendation.
Davis: So maybe you’ll have to intervene.
Bright: Some…I think…
Davis: You’ll have to watch out… (I am pointing to package insert for anti-retroviral drugs we read the list of severe side effects in earlier.)
Bright: Exactly, exactly, yeah, yeah, yeah. Because I’m planning to take him to South Africa. Anytime, yeah.
Davis: I think the child is as healthy as any other.
Bright: Yeah, he looks very healthy.
Davis: So, there’s no problem.