POSITIVE OR NOT?
By Vivienne Vermaak
26 March 2000
Background: Carte Blanche is an award-winning actuality programme broadcast by M-Net in South Africa. It airs on Sundays between 19.00h and 20.00h. This segment was produced after many editorial discussions and many hours of heated debate and resulted in the Carte Blanche journalist being barred from Baragwanath peri-natal research unit.
Presented by by Manu Padayachee, participants in the programme were:
- Maki Kunene: AIDS counsellor (Hillbrow AIDS clinic)
- Otto and Shelley Grobler: Victims of false positive HIV testing
- Dr Neil Malan: Specialist phycisian (Otto's second doctor)
- Dr Glenda Grey: Clinician at Chris Hani Baragwanath hospital. Top SA AIDS researcher/Clinician in charge of clinical trials into the reduction of HIV mother to child transmission.
- Dr Henry Booker: Micro-Biologist, Lancet Laboratories
- Prof. Ruben Sher: Renowned SA HIV expert. SA AIDS pioneer
This week has seen the HIV/AIDS issue back on the front pages. President Mbeki has re-ignited the debate around the most basic assumptions, and there has been controversy about the rights of gay men to donate blood.
But there is still widespread ignorance and emotion about HIV and AIDS. And there are sometimes contrasting results that emerge from blood tests. Tonight we meet a victim of testing.
(MANU TAKING BLOOD SAMPLE. OVERLAYS OF PEOPLE)
To most people, an HIV test is the most traumatic procedure a person can take, because a positive result spells doom in the popular imagination.
Yet, testing HIV+ does not mean you have AIDS and it is not clear how many people contract AIDS when testing HIV+. Once the virus enters our bodies, our body launches a counter-attack by producing antibodies. It can take the body up to 6 months to respond. Most standard HIV tests test for the antibodies, not the actual virus.
HIV testing is at the core of AIDS, it defines our statistics and if found positive will define your lifestyle for the rest of your days.
(OVERLAY MAKI's OFFICE)
Maki Kunene is an AIDS counsellor in Hillbrow and says that just being told you’re HIV positive can make you ill.
Maki Kunene:
People can start to develop symptoms just from being worried. It shows how powerful the mind is.
(OVERLAYS OF OTTO AND SHELLEY)
But for Otto and Shelley Grobler of Despatch, the HIV diagnoses was a virtual death sentence. Their lives changed instantly when a blood test for an insurance policy showed Shelley was negative, but Otto Positive.
Manu:
That term "HIV positive". How did it make you feel inside?"
Otto:
I was shocked. I couldn’t believe I was HIV positive.
Manu:
What were your worst thoughts?
Shelley:
That I wasn’t going to be here to see my children grow up …
(OVERLAYS OTTO AND SHELLEY)
Dumped by his insurance company, Otto faced possible divorce, because his wife suspected him of having an affair because of the result.
Shelley:
I was so mad I didn’t talk to him for a week.
Otto:
We couldn’t speak to anyone. Our doctor told us not to say anything.
Shelley:
And he was complaining a lot that his throat was sore and he was getting the flu and things like that, I just thought: "this is it". How long is it going to last? How long are we going to be together? It was difficult, Manu ...
(OVERLAYS AT HOME)
Otto recalls slipping into a deep depression, even contemplating suicide. He knew of at least one occasion where a person took his own life.
Otto:
I started drinking more at the time. At work I just sat in my office. I was careful that no one drank out of my cup. I washed my own cups.
It was difficult, incomprehensible.
(OVERLAYS AT BARAGWANATH HOSPITAL. Dr GRAY)
Otto's reaction is typical of how most people react when testing positive. Dr Glenda Grey of Chris Hani Baragwanath Parental Unit knows the psychological symptoms.
Dr. Grey:
Complete shock, they’ve never ever slept around, they’ve been only faithful to one man, it’s a planned pregnancy, it’s their first child. They were excited but are now filled with guilt for passing on the virus, scared of the baby dying of HIV. They wanted to breastfeed but now they’re concerned about breastfeeding because they might pass the virus on to the baby.
(OVERLAYS OF BLOOD TEST)
After 7 months, Otto's own guilt and denial got the better of him. He went to another doctor for a second opinion. This time he was told he was HIV negative.
Otto:
His first reaction after seeing the tests was that he couldn’t believe I was even told I was HIV positive. Because there were two tests. One positive and the other negative. He couldn’t believe I was told I was told I was HIV positive!
(OVERLAYS TEST. C/U ELISA RESULT. CLOSE UP WB RESULT)
Indeed, when one looks closely at Otto's test result, one can see that two tests were done. The first is most commonly used ELISA Test, which tested positive. The second test which tested negative is a more expensive test called the Western Blot test.
Otto:
I can't believe that one little test can put one through so much.
(OVERLAYS DR MALAN.)
Otto's trauma ended when Dr Neil Malan of Port Elizabeth told him he was indeed HIV-. Although both tests are marketed as being more than 99.9% accurate, Dr Malan considers the Western Blot test to be a far more accurate HIV test. He explains some of the problem areas of ELISA tests.
Dr. Malan:
And there are a number of reasons why the ELISA test can give a false positive, like the flu vaccination…
"Just the ordinary flu?"
An ordinary flu vaccine.
"So if I come to you for a flu jab, using the ELISA test I could be HIV positive?"
You could, yes, test positive on the ELISA, that’s right.
(OVERLAYS OF ELISA SMALL PRINT)
The small print of the ELISA tests lists 20 diseases which could influence the ELISA test result, including syphilis, flu vaccine and anti-yeast reactions.
(PHOTO OF RASNICK)
Californian bio/chemist Dr David Rasnick argues that in real life the list is 70 diseases long. He theorises that false positives occur because HIV antibodies aren't specific to HIV after all.
In an affidavit submitted to a US court last year, he states that "these tests are being abused and should be outlawed."
HIV expert Ruben Sher has his own thoughts on the theory.
Prof Ruben Sher:
"No, I don’t agree. We did find false positives in women who were pregnant, we don’t know why. And we found in Sweden when people with adenovirus infections often gave false positives. And it happens with malaria.
Somebody was diagnosed through insurance in my laboratories of having been HIV positive on an antibody test. He pitched up to my rooms with his fiancée and his mother and says, I’ve never slept around. So I take it for granted and repeat the test and it comes out negative. Maybe there was an error in the lab, maybe it got mixed up in the tubes. These things happen. If in doubt repeat the test.
(OVERLAY LAB SHOTS)
Glenda Grey confirmed that they always follow up with a second test at the clinic.
Dr Grey:
"But would both tests be the Elisa test or would you go for a more sophisticated, more expensive test?"
We use two ELISA’s but two different techniques. So we use two different types of kits and two different kinds of tests, but they would both be ELISA.
"To Otto that's just not good enough."
Otto:
I believe I was sold out. I can’t understand why insurance companies even make use of the ELISA test. It’s just a screening test. How accurate are our statistics in that case?
(OVERLAYS IN LAB. ELISA TESTING)
While my ELISA test was being processed, we tried to find answers to Otto's questions. Dr Henry Booker from Lancet Laboratories explains why Otto is regarded as HIV negative, even after testing positive on the Elisa test at least 3 times.
Dr. Booker:
(Referring to Otto's test)
This patient is showing a positive ELISA and the Western Blot is negative on the basis that there are no bands on the Western Blot and this would then be called a false positive on the part of the ELISA.
I must stress that these are very rare instances.
(OVERLAYS WESTERN BLOT TESTS. PHOTO's Dr TURNER AND PAPADOPULOS)
Lancet considers the Western Blot test to be the gold standard for HIV testing, saying it is almost 100% specific to HIV. This point was contradicted by Dr Val turner and biophysicist Eleni Papadopulos who presented data to the 12th International AIDS conference in Geneva. Citing cancer research, the Australians argue that the Western Blot test is not specific at all, since 50% of dogs tested came back positive.
They point out that, due to lack of standardisation, it is possible to go from being HIV+ to HIV- by simply crossing the borders of a country,
And warn that the condition of pregnancy itself can cause false positive results.
Dr Grey:
I’ve never seen any data to suggest that so I’d be interested to know where you get your information from. From our results and from results around the world the ELISA test in pregnancy is very accurate.
(OVERLAYS ELISA TEST)
Yet the Elisa test itself issues a warning for the testing of pregnant women. The statistics tabulated suggest a high false positive rate for people who test + in this risk group, as high as 44%.
(OVERLAYS LAB)
Much of the grey areas in AIDS testing has to do with time and money. Doctors are under pressure to produce results cheaply and within hours, if not minutes. RAPID testing is the latest weapon in Dr Grey's arsenal.
Dr Grey:
("How accurate is RAPID testing?")
It’s very accurate. We’ve been matching our RAPID tests with the ELISA’s and we’ve had no discrepancies so far.
Dr Booker has a different experience with RAPID tests.
Dr Booker:
They pose to us many problems. We find the false positives are much, much higher than they are on the ELISA.
(OVERLAYS STATISTICS)
How does all of this impact on the big picture? Our national statistics are based entirely on ELISA tests performed on pregnant women. Only one such test is required. I don't mind my one ELISA test, because it is negative. To people like Otto however, there will always be doubt.
Otto:
Insist on a better test. Don’t just accept that whatever your doctor tells you is the truth.
I’m sure there are people out there who we don’t know about who are HIV positive and were never tested. But what about the people like me who have been tested and turned out not to be positive? How accurate are those statistics?
(end)