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ShareMumbai: The last 20 days have been the most harrowing in Seema Kapoor's life. Earlier this month, doctors dropped a bombshell on the 40-year-old stylist saying she had tested HIV positive. Kapoor went from being puzzled to contemplating suicide.
"The usual reasons people contract HIV, like multiple sexual partners and blood transfusion, didn't apply to me, so I was surprised," says Kapoor. "But soon, all sorts of horrible thoughts took over. Did my husband [who lives and works abroad] infect me? How would I face the family? What would happen to our 16-year-old daughter if word got out and we were ostracised?"
Kapoor spent many sleepless nights over this, and decided that if she and her husband tested positive, "we would quietly go and kill ourselves". Luckily for her, before doing anything drastic, she approached a private clinic for a second opinion and this time the results indicated she did not have HIV. "It was like getting another life," says the south Mumbai resident.
No second tests for many
Not everyone is as fortunate as Kapoor. Many poor people cannot afford to go to private hospitals to repeat the tests. The World Health Organisation (WHO) in fact recommends three confirmatory tests, because the antigen used in these tests can pick up markers from infections like malaria, TB or even the flu, apart from the HIV virus. But the norm in India and Africa continues to be a single test.
That's why the recent admission by the Mumbai District AIDS Control Society (MDACS) -- that over 70,000 people tested for HIV at BMC-run hospitals and health centres in 2007 had been given erroneous results because of faulty testing kits -- is likely to be a symptom of a much deeper malaise. In fact it was a recent case in the Delhi High Court which opened the can of worms and forced MDACS last week to put out a notice in the papers, asking people to come for a re-test.
How many of those tested will see the notice is anybody's guess. "We're not expecting too many people to come back," admits Dr SS Kudalkar, head of MDACS, the government-affiliated agency which disburses HIV testing kits and carries out awareness programmes. "We hope they will, just as they did last year."
Asked to elaborate, Dr Kudalkar says that in 2008, the matter of faulty kits came up at an internal meeting between MDACS and its partner testing centres. So why did they wait so long to issue a warning? "I don't know. I just took over," was Kudalkar's response. So, clearly, this is not a new issue, and the problem with HIV testing has been around for some time. And there's no way of knowing just how big the scale of the problem is, if the agencies concerned are not open about it.
Trauma and panic reactions
The company that manufactured the kits used in the 2007 tests has been blacklisted by the nodal National AIDS Control Organisation (NACO) but that hardly accounts for the trauma erroneously tested people go through. "Imagine the repercussions of being told you are HIV positive when you are actually not," says Dr IS Gilada, HIV consultant and head of the People's health Organisation. "It can be life-shattering, to say the least."
Take the Chavans who were expecting their first child, when a blood test showed Sangeeta was HIV positive. "The doctors at the testing centre, the gynaecologist and even the family panicked and forced her to have an abortion," says Dr Gilada, "only to discover, with a second test, that the first had been a mistake."
Says clinical psychologist Vaishali Shelar: "It's horrible what that does to people. They become depressed, reclusive and stop functioning altogether." Apart from the possibility of a faulty test, many people also can't distinguish between HIV and AIDS. (The presence of HIV indicates a suppressed immune system, which can be managed with lifestyle and diet changes, apart from medication. AIDS, say scientists, results from toxins, infections and other factors overcoming the immune system.)
Lives turned topsy turvy
But even awareness often is not enough to prevent the damage that can follow from a faulty HIV test. Accountant George K's life changed because of this. The Dharavi resident had taken a job in Dubai when medical reports showed he was HIV positive. He was refused a visa. He got himself tested again to prove it was in fact negative. "But this second set of results couldn't convince the officials to grant me a visa," says George.
The consequences of inaccurate testing can be particularly traumatic -- and dangerous -- where children are involved. Clinical psychologist Shelar remembers a case where a couple brought their three-year-old daughter for one last check-up before starting her off on anti-retroviral treatment (ART, the standard medication, for HIV). "The parents were positive, but the child didn't exhibit the telltale signs of HIV, like stunted growth and fragile health," says Shelar. "We recommended a second test, which turned up negative."
In the first instance, the clinic had forgotten to mention that with kids, there is a vital 'window period' during which HIV may be in recession. If the toddler had been put on ART, Shelar says, she would have suffered damage to her immune system and haemoglobin count, and probably had a host of psychosomatic disorders as well.
