World AIDS Day: Why is India against HIV self-testing despite WHO advice?
If HIV tests were as easy as getting a pregnancy test, would you check once?
The World Health Organisation (WHO) ahead of World AIDS Day (1 December) this year, has strongly recommended the introduction and use of self tests in the case of HIV. These tests require one to prick the tip of their finger and collect a blood sample, which then, like a pregnancy test, reflects a positive or negative result in mere minutes.
The ease of use aside, the tests are also effective in testing oneself without having to deal with the stigma associated with HIV. In most countries where the government has taken the initiative to encourage people to use them, the test is available free of charge.
But that's far from the Indian reality. Our National AIDS Control Organisation (NACO) has so far been strongly opposed to the idea of self-testing as it is "against Indian national treatment guidelines."
In India, there is a certain procedure to HIV testing which involves a pre-test, a confirmation and counselling post result. NACO argues that a home test may come in the way of this system.
While that logic appears valid, a 2011 news report highlights a different argument put forth by the health ministry:
"We don't want people to self-test and then commit suicide or self harm because they are HIV positive. Also, the quality of such tests are under scrutiny. What if the person harms himself after finding himself HIV positive but he is actually HIV negative?"
The assumption here is that the tests are not trustworthy despite being 99.7% accurate. Besides, this doesn't add up with the reality that HIV home tests are easily available online. One just has to be able to run an Amazon search and foot the Rs 3,000 bill.
WHO statistics say that about 50% people around the world who are infected with HIV haven't been tested. In India, for instance, an estimated 40% of the 2.3 million infected with the virus don't even know about it.
And while this test may not reach all those people, it can help lessen the gap. Catch spoke to Dr Pankaj Soni, Associate Director at the Department of Medicine, Max Hospital, Saket, who specialises in HIV, and he informed us that even in a lot of hospitals the initial checkup is done with the help of card tests, which is the same as the self tests.
Here's a video on how the HIV self test works.
Excerpts from the interview:
DS: What are the prevalent testing methods for HIV in India? What procedure do you carry out?
PS: Okay, so first comes the screening test. In this there's the card test where [one checks] if a person is [HIV] positive or negative. The second test, which is usually done in bigger hospitals, is through a method called Elisa. That too is a screening test. A positive/negative Elisa doesn't mean anything, it just means that positive may actually be positive or false positive, and negative means negative.
So once the Elisa tests come in, there are two other methods to [further screen] the test. After this, [the results can read] 1 positive, 2 positive or all 3 positive. Based on this information we send the patient for a PCR test, that's the confirmatory test.
DS: Is that also how the self test works?
PS: Okay, no. The self test is basically the card test which we are talking about. WHO is encouraging these self tests because more than 50% people who are harbouring the HIV virus do not get the test done due to lack of resources, apprehension to go to a clinic and ask for a test.
DS: Does it help people rid of stigma, is that what you're saying?
PS: Yeah, yes. Exactly.
DS: How efficient are these tests?
PS: Yes, they are efficient. What we have seen it that they may show false positives, but false negatives are less.
DS: But false results can be very problematic?
PS: Yes but the confirmation test is mandatory. Even for Elisa test. So whether it is a card test or an Elisa test, every individual must go to the PCR for the confirmatory test.
DS: Can you confirm that the test is 99.7% accurate?
DS: So then does NACO's concern that people would not go for the confirmatory test make sense?
PS: See, the WHO and the CDC's (Centre for Disease Control) motive is that if you educate people [it'll work]. As of now, what's the status of HIV? It's a 100% curable disease provided you're willing to take your pills throughout your life.
This is what we need to educate people. That yes, testing is important. People who are at risk, or they feel they are at risk, should test and [in this case] they wouldn't have [to deal with] the taboo of going to a lab. They can test at home and then seek medical treatment.
Presently, when [potential] HIV patients go to a lab, there's a pre-test counselling. Once the test is done, there's a post-test counselling where all details about their treatment, needs, lifestyle are told to them in detail. The only thing is that since this is confidential, unless the patient desires, the information has to be withheld from others [including the family].
DS: Why do you think NACO is opposed to self-testing?
One reason is logistics. WHO, in the countries where it has launched this programme, they're distributing it for free. But in India, providing a self-testing kit free may not be a financially viable option.
But it will eventually come because 50% are still not aware.
DS: You need to tell me more about that figure.
PS: Presently, WHO says that 20 million people [worldwide] are getting HIV treatment as of now. And that there's another 20 million that are HIV positive and not getting any treatment.
DS: NACO has said that using these tests is "against Indian national treatment guidelines." Could you help me understand what this means?
PS: NACO issues guidelines in accordance with WHO and CDC but they modify it according to the Indian context. Considering these finances... but I'm sure if WHO starts promoting the idea of self-testing, gradually they might include it.
DS: So finances are largely the reason?
PS: Yeah. WHO has made a call for free testing, you know. So providing that [is a challenge] with our huge population.
DS: Yes but that's not how it is being projected, right? It's being portrayed as though it's not good for people.
PS: Yeah, so that's why I said in a lab there's a pre and post test counselling. That part would still be lacking in a self test.
DS: But here's the problem. The test is not accessible to those who need it for free i.e. economically backward. I found the test online with a single search and it costs Rs 3000 which isn't something everyone can afford...
PS: The card test is only Rs 100 [at clinics]. The thing is most people are unaware and need to be educated. Most people who come to our clinics, in a place like Delhi, also are under the impression that once they're tested positive, they're going to die.
DS: Yes, because people confuse HIV and AIDS.
PS: Yeah, so what's happening is that our ways of educating the common public is not very effective. We are unable to put across the right message. That HIV is a curable disease.