The title quote was written by George Bernard Shaw in ‘Saint Joan’ in 1923 but if ever a saying is timeless it’s this one.
The reason I’m dragging it out of the cliché locker is because I feel I have to take issue with a couple of articles that have appeared on PositiveLite.com recently.
They are IS HIV TRANSMISSION POSSIBLE WHEN VIRAL LOAD IN THE BLOOD IS UNDETECTABLE? from CATIE and INFECTIOUSNESS coming from Aidsmap.com
I respect the work that people in HIV organisations put in to the struggle to control the virus and I appreciate the time and effort put in by writers who do their best to provide us with information – we’d be in a sorry state without them. I also know the perils of one article writer criticising another but I genuinely mean no disrespect. These two articles are pretty representative of what you will find all over the net and therefore my problem is more with the genre than the individual articles themselves.
The CATIE article addresses a question which is in the back of everybody’s mind. It’s crucial, both for positive and negative sex partners. The title suggests that the question will be answered but unfortunately that’s anything but the case. The first paragraph sums up what viral load actually is but hardly gives hard and fast rules which we can hang our hats on. It talks about the viral load being measured in the bodily fluids of a positive person. Surely it’s not. It’s measured in the blood and only very rarely in semen, saliva etc.
“Research shows that successful HIV treatment can reduce the viral load to “undetectable” levels and this can reduce the risk of HIV transmission. However, HIV transmission may be possible when the viral load is undetectable…The risk of HIV transmission when taking antiretroviral treatment may increase if sexually transmitted infections (STIs) are present…This risk may also be higher for anal sex than for vaginal sex.”
What do they mean, ‘can’ and ‘may’? We’re thirty years into the history of the virus. We should be hearing ‘does’ and ‘will’, not bet-hedging to cover all possibilities!
The following is something we’re all very aware of but what does a statement like this actually tell us?
“Viral load tests used in Canada cannot detect HIV in the blood if there are less than 40–50 copies/ml. Therefore, an undetectable viral load means the amount of virus in the blood is too low to detect, it does not mean that there is no virus present.”
First of all, we know the testing procedures are still limited but surely we’re entitled to ask why? Secondly, what the hell are we supposed to take from such a statement? Getting everybody to undetectable status is the universal aim but is pretty pointless if we don’t know how much of the virus has escaped detection because the procedures are lacking. Of course ‘undetectable’ suggests ‘less infectious’ but thirty years into the disease and its treatment and we still don’t know whether that’s entirely true. Until other bodily fluids are routinely tested we’re no closer to an answer and even then, the virus may be hiding in bone marrow, organs and brain tissue. Testing every susceptible piece of the body may never be possible but telling us we’re undetectable but maybe still dangerous, tells us almost nothing; we deserve better.
Another pretty meaningless statement is:
“Research shows that a lower amount of virus in the blood is usually associated with a lower risk of transmitting HIV to others, and a higher viral load is associated with a higher risk.”
Duh! And by the way, what research? We probably all accept the truth of this statement but what research proves that? Far too often the words ‘Research shows…’ are thrown at us in the expectation that we’ll accept that as gospel. Very often research is so small-scale and out of date that it is barely relevant. It is wrong to assume that the reader can’t cope with references to the exact piece of research and it should be expected that research is looked at with a critical eye but very often, ‘research shows…’ will back up a multitude of assumptions.
CATIE quotes HPTN 052 research to back up theories that a lower viral load reduces risk but that research was conducted amongst tiny groups of sero-discordant heterosexual partners in Africa and Thailand. The research is ongoing but trials to measure the same risk reduction when it comes to homosexual, anal sex…well you can whistle for that one! A lot of people hang a lot of credence on HPTN 052 but for HIV+ gay people, it suggests absolutely nothing and proves even less. To be fair, the CATIE article does point this out and even questions the relevance of the research but still draws conclusions that say we can reasonably assume that the same applies to anal sex. Uhm sorry, no it doesn’t!
When a paragraph begins with:
“Successful antiretroviral treatment can lower the viral load in the blood and other bodily fluids to undetectable levels and this can reduce the risk of sexual HIV transmission...Antiretroviral treatment may be much less effective than 96% when these conditions are not met.”
You know that it means very little. We want to know that in the majority of cases, ‘it will’!
More woolly information follows:
“A higher level of HIV in the semen, vaginal fluid, and rectal fluid may increase the risk of transmission when the blood viral load is undetectable. However, it is unclear how often this happens and how significant it is in terms of HIV transmission. Research shows it may be more common if a person has an STI, but can also happen in the absence of STIs.”
There they are again: ‘may’ and ‘can’, plus a ‘research shows’ and an ‘unclear’. How exactly is this useful information? The fact is that the research in all areas of HIV is still shockingly lacking and in the meantime we have to put up with guesswork. That's not good enough in 2013. If there’s no more money for extensive and indisputable research; or no plans are on the table; or government and scientific bodies are standing in the way; or moral objections are blocking funds it’s the responsibility of HIV sites and organisations to say so and tell their readers the truth. “We just don’t know and this is why we don’t know,” is far more acceptable than ‘cans and maybes’. At least then we know where we stand.
Doesn’t this next sentence just sum it up?
“Although there have been no studies among gay men and other MSM, there has been one report of HIV transmission occurring between two men when the HIV-positive partner had an undetectable viral load.”
Pitiful, really! Are we going to have to take to the streets again to demand efficient and relevant research which will end up saving the state millions in health care and why aren’t our large HIV organisations leading the charge?
The second article comes from aidsmap.com, which is generally regarded (just like CATIE) as a reliable and up-to-date source of information. The introduction is as follows:
“Aidsmap.com reports about 10% of gay men taking antiretroviral treatment have low levels of HIV detectable in their semen, according to new research. Whether or not this level of HIV in semen is associated with transmission is unknown.”
Now I thought this was interesting and went in search of this new research. It stemmed from a University of California study into the effect of the herpes virus on HIV transmission (read more here.) It involved 46 people, split between so-called HIV transmitters and non-transmitters and could hardly be called ‘large scale’. The Aidsmap article refers to 114 men in the study but even that’s hardly a significant research group. The point is that Aidsmap presents this as fact, based on ‘a US study’ when in fact it’s a little more complex than that and to state that 10% of men on HART have low levels of HIV in their semen seems pretty conclusive, yet it is based on a small study concentrating on the Herpes virus. Again, the statement may be true; it may be relevant and important but we need more evidence to back up global statements like that. (Editorial comment. PositiveLite.com says: even more important is whether such low levels of virus have any significance, i.e the ability to result in transmission. Is in fact the semen issue a complete red herring? We suspect yes, given the transmission history - or lack of it - in people with undetectable viral load in their blood.)
PositiveLite.com has quite rightly questioned the accuracy of aidsmap's references to the HPTN052 research, which is trundled out yet again yet proves practically nothing for gay men. (Editorial comment; PositiveLite.com has since received acknowledgement from aidsmap that the aidsmap information was incorrect and that a retraction (apology?) will be issued shortly. The moral is, as Dave says, question EVERYTHING you read.)
The article then goes on to say:
“But there have been rare case reports of HIV transmissions in the presence of an undetectable viral load”.
What rare case reports? How many? Why isn’t this being investigated right now, on a large scale, to actually establish some facts? It’s almost as if HIV organisations and sites have become so accustomed to writing generalised pieces that repeat the same old suspicions and assumptions, that it has become a new truth of its own. Why aren’t they screaming out for new research and not settling for worn out cliché responses?
It goes on:
“Untreated bacterial sexually transmitted infections (STIs) such as chlamydia and gonorrhoea may cause viral load to increase in genital fluids, even if a person is taking effective antiretroviral treatment.”
‘May’! Why don’t we know for sure?
Finally, statistics are rolled out:
“They also found that 36% of study participants with a detectable viral load were shedding HIV in semen compared to 6% of participants with an undetectable viral load…A urethral bacterial STI was diagnosed in 4% of men, but these untreated infections were not associated with the presence of HIV in semen.”
Okay, let’s assume that the study involved 114 men and not 46. 36% of 114 is 41. Is it really valid to come to wide-reaching conclusions based on the results of 41 people? The urethral bacteria numbers are even less relevant: 5 people out of 114!
The point is that readers take headlines and believe them to be true, when in fact they’re often based on such small-scale studies that they barely merit a mention. Of course, all these studies may be revealing vital information and should be reported but if one (small) study suggests a trend then it should be replicated on a wide scale across the HIV community in order to establish whether it is more than just a medical soundbite. It’s the responsibility of authors and their organisations to look at these things more critically and if necessary make readers aware of the scale and validity of studies, statistics and suppositions.
The reader also needs to question anything that’s not clear, or seems to be stated as fact when it’s not proven. The problem is that life’s just too short to take the time to do that. So the promulgation of half-truths and loaded headlines becomes the easy way out, eventually leading to mistrust and suspicion.
This article of mine may seem like an attack on two highly regarded HIV information sources; it’s not meant to be. I have used them as examples of what we see every day in articles and discussions throughout the HIV community. We really do deserve better than to be fed meaningless conclusions based on ‘maybes’ and ‘possibilities’ but it’s not the fault of the authors. News has to be reported, no matter how tenuous the facts.
Unfortunately, it looks like the HIV community has to start demanding again. Demanding proper, well, funded and large scale research at home and abroad. The World Health Organisation has a responsibility (and the finances), as does the pharmaceutical industry and every other research or research-funding facility across the globe, including the major philanthropists like Bill Gates etc.
I’m fed up with endless arguments as to whether an undetectable status is safe or not, or whether TASP, PrEP, PEP and various other acronyms are the way forward, or whether the viral load in your blood reflects the true levels in your body. Just how safe is condomless sex between sero-positive people on HART? The questions are endless but I would like answers and soon. Some people and organisations are dragging their feet in providing them. It’s a question of having the political will to do the necessary research and damn well prove things once and for all and if the ‘climate’ makes it difficult to instigate the discussion and find the evidence, then we’ll just have to scream and shout until that changes. If it doesn’t happen then confusion drives apathy and stigma grows.
When you next read an article about the latest theory concerning HIV treatment and transmission; count up the number of ‘statistics, if’s, may’s, possibly’s and researches show’ and ask yourself if you are being presented with new facts and are you learning anything new. If the answer is negative then you may well be being short-changed!
I’m fully aware that some people will be irritated by this article but then I hope they’ll respond and widen the discussion. If I’m talking out of my backside, I hope you will say so - but you’re going to have to prove it!