Get your story straight

March 5, 2013 § 3 Comments

The week is only two days old and we’ve seen two big stories about HIV/AIDS in the headlines this week – one seemingly good news, the other not so good. And both have left me fuming, but not for the reasons you might think. As a health journalist with a long-held interest in HIV/AIDS, I found the reporting around both of these stories difficult to stomach.

A “cure” for HIV/AIDS

Let’s start with the good news. The first story heralded the possibility that a cure might have been found for HIV/AIDS. Of course, if this were true, it would be wonderful news indeed, but closer inspection of the facts showed a different story altogether.

In fact, what had happened – and you can read the Mail & Guardian’s version of the story at  – was that a child in the US had been “functionally cured” of HIV/AIDS. These were the words of Dr Hannah Gay, who had cared for the child at the University of Mississippi’s medical centre.

Being functionally cured of HIV/AIDS means you still have the virus in your blood, but its levels are so low as to be undetectable via standard tests. This child was given post-exposure prophylaxis (PEP) within 30 hours of birth, because no-one knew the mother was HIV-positive, so normal prophylactic measures couldn’t be administered during labour.

But, as a Twitter friend pointed out, that’s well within the window period for giving PEP to healthcare workers who get a needlestick injury, for example – so why are we all so surprised that it worked?

I’m not a scientist, so it’s possible I’m missing nuances in the research, and I stand to be corrected when the paper is published. But I am a journalist, and I baulk at the way health stories like this are reported.

First, this is a case study. A single patient, given an experimental treatment (in the sense that this is the first time a baby has been given this treatment shortly after birth). That makes it anecdotal evidence. It’s a once-off, people.

By yesterday evening, sense had prevailed, and local HIV/AIDS experts were calling for caution and stressing the need for further research. Because while, happily, this might have worked for this child, we cannot extrapolate and call it even a possible or seeming ‘cure’ for HIV/AIDS.

Besides, any health journalist worth their salt would know that if that child is considered ‘cured’ then there is also an enormous body of HIV-patients out there who are also ‘cured’ of their disease.

Because here’s the thing: if you take your ARVs as prescribed, every day, you can reduce your viral load to undetectable levels. Let me put that in simple English: take your ARVs and they will not be able to find HIV/AIDS in your blood. But you still have to take your ARVs to keep it that way.

Yes, this child had been off treatment for several months, but she’s two and a half, for crying out loud – who knows what her viral load will be in a year if she stays off treatment?

This is the HIV/AIDS  message that doesn’t seem to be getting out there – that HIV/AIDS is a chronic, manageable disease. In other words, just as you can live to a ripe old age with high cholesterol or diabetes, so long as you do as your doctors tell you, so you can live to a ripe old age with HIV/AIDS if you take your meds and do as you’re told.

And in the private health setting in particular, many doctors will tell you that HIV/AIDS is better managed than any of those chronic diseases of lifestyle.

However, bandying words like ‘cure’ about does no-one any favours. Because the quotes about ‘prevention still being the most important strategy’ down towards the end of the articles are lost in the frenzy about a possible cure. And we should all know by now that the prevention message has been one of the great failures of public health communication – no-one even hears it anymore.

African women found defective

And then to the second piece, which really got me fired up – a report from Reuters I saw this morning with this headline: “Anti-AIDS pill, vaginal gel unsuitable for Africa: study”.

It was the ‘unsuitable for Africa’ bit that made me see red – there’s so much Eurocentric, western interpretation in those three words, that I had to look into the original study for myself.

In essence, the authors of the VOICE study (Vaginal and Oral Interventions for Combating the Epidemic) attempted to find out if daily use of a vaginal gel or an oral tablet could prevent HIV in young, unmarried African women – a group at very high risk of HIV infection.

I have no quibble with their choice of demographic – those facts are incontrovertible. Women account for 60% of adults with HIV in sub-Saharan Africa, and young women are especially vulnerable. We know this, and HIV/AIDS organisations have been saying this for years.

When I objected to the use of those words on Twitter, it was because my reading of the headline made it seem as if African women were defective in some way – inferior. I was personally affronted, to be honest, and said as much, but was prepared to concede that it might just be me.

Someone responded that the trial was based on other, similar trials, and that the rate of compliance was low; that women had not reported accurately on their compliance with the trial requirements, and so on.

Again, my beef is not with the study itself – they tried, they found compliance was low, and they are now investigating as to what those reasons for non-compliance might be. (And people lie about their compliance on studies all the time, it has to be said.) But my research uncovered some very interesting things arise, none of which are touched on in the Reuters report.

Firstly, the two previous studies were conducted in very different populations. The VOICE study had healthy, HIV-negative, young women, many of whom were young and single. The iPrEx study, in contrast, looked at 2 500 men who have sex with men, and the Partners PrEP Study involved 4 758 heterosexual couples in which one of the partners was HIV-positive.

Now, just looking at those population groups, I’d argue that the latter two are far more motivated to be compliant with an HIV-prevention programme. Although HIV-transmission in South Africa tends to be primarily heterosexual, gay men are one of the big risk groups for HIV – and they know it. My gut feeling is that prevention messages have had far greater reach in the gay community than they have within the heterosexual community, so I would expect compliance with a programme like this.

Similarly, if you’re married (or in a committed relationship), and you know your partner is HIV-positive, you too are far more motivated to comply with an HIV-prevention programme that could protect you from infection. Aren’t you?

To be honest, I’m not surprised at all that compliance was so low. Firstly, all of us who can remember what it felt like to be young, healthy and single remember that feeling of invincibility, that bad things happen to other people – I’m not sure that any young, single population group anywhere in the world would be compliant on this programme.

Also, HIV/AIDS still carries a huge stigma in South Africa. Taking a prophylactic ARV daily is still taking an ARV, which means that just being in an HIV/AIDS trial could have serious social repercussions.

We live in a country where women are brutalised on a daily basis, where women’s bodies are still not their own. The study authors themselves say: “Efforts to promote abstinence, monogamy and male condom use haven’t been enough to stop the HIV epidemic, nor are these methods feasible in most settings.” But you want women to apply a vaginal gel before and after intercourse, and take a daily preventive pill?

I’ve interviewed young women who were pregnant because their boyfriends threw away or otherwise sabotaged their birth control pills, whose partners refused to wear condoms and infected them with HIV, and we know that there are many who are never given the option of refusing sex, and you want them to do what? Are we really so surprised?

And what about the counselling and education given before the trial started? Are levels of education in all three groups the same? Levels of literacy? Were they in the respondents’ home languages? Were they culturally sensitive? Those are just some of the questions the failure of a study like this raises for me – hopefully the follow-up as to the whys and the wherefores will shed some light on what went wrong.

But here’s the kicker – that trial with the 4 758 married couples that showed 42% fewer HIV infections in those on the drug? The forerunning trial that was cited as a great success? It was run in Kenya and Uganda. The last time I checked, Reuters, they were both in Africa.


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§ 3 Responses to Get your story straight

  • charliesbird says:

    I hope your blog gets read by millions of people, so they can at least begin to be educated about statistics and responsible reporting. Your erudite explanation leaves no questions unanswered. Today you are my hero! Thank you!


  • Ann Rundle says:

    Thank goodness someone will say what we all unfortunately see so often, the sensationalist headlines which ruin lives. If journos were held responsible for their “news selling” yet false headlines and had to face court cases would this raise the level of integrity I wonder.


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