To tell or not to tell?

SWISS STUDY CREATES CONTROVERSY AT AIDS 2008 IN MEXICO.
Greetings from Mexico City. One of the hottest topics  here at the International AIDS Conference is how to handle the findings of a study published in Bulletin of Swiss Medicine (Bulletin des médecins suisses) that claims, "HIV-positive individuals on effective antiretroviral therapy and without sexually transmitted infections (STIs) are sexually non-infectious.” (quoted from AidsMap)

Some experts are saying we shouldn’t talk about this to HIV patients because they will take it the wrong way and engage in riskier behavior. It is also argued that in places where access to viral load monitoring is limited or non-existent, they can’t consistently track whether or not patients have undetectable viral loads anyway, so the information is of no positive use to them. These are, admittedly, fairly compelling arguments for keeping these results quiet.

But I see three problems with that advice:

1. Patients have the right to access
Ethically, the idea of the medical community conspiring to censor legitimate scientific research because we decide people can’t handle the truth seems like a flawed idea and a dangerous precedent to set. I think all people, and particularly those infected with HIV, are entitled to full access to all the information we have on the disease.

2. No one can keep this information quiet
The genie is already out of the bottle. The fact that you are reading about this now on the Internet is proof of that.  Beyond that, the topic is being heavily debated at the world’s biggest HIV conference.  The information is published and already spreading around the globe. Nothing I know of can stop that.

3. If the findings are not delivered clearly it could misinform
The results of this study are highly prone to misinterpretation. For me this is not a justification to keep it quiet. It is all the more reason to flood the market with information to keep the findings in context.  With regard to resource-limited settings, the overwhelming majority of HIV-infected individuals have no access to their viral load or STI status to even know if they meet the criteria specified in the report.

Do I feel people should be encouraged to have unprotected sex? No. Definitely not. Given the consequences of the virus, the low risk reported by the Swiss is still something that needs to be treated seriously. Even if the statistical probability of being struck by lightning is low, I’d still discourage anyone from standing in a field with a metal rod during a thunder storm. 

As for the resource-limited setting (accounting for most of the world’s HIV-infected population) the point made in the study is mute because so few people have the level of care required to meet the criteria specified to be in the low risk category. And lets face it, the study could simply be wrong.  It wouldn’t be the first time a well-conducted study was disproved by further investigation. 

For me the issue here is not “Whether we should keep these findings from the people?” The only issue is how can we best manage the impact of this information on the population. And that means being proactive and getting the correct version of the story out to the people in the correct context from the start.

Comments

[James Mwangi]

The findings of this study should be shared and made public. There are more benefits accruing from them than the possibility of reckless sex. The fact that they have elicited the kind of interest noted at the Mexico HIV Conference says a lot about the subject. Possibilities are that more researchers will take the initiative to try to reconfirm the finding - which is good. I expect that those with undetectable levels of viral load should frequently monitor the same if they belief in the findings of the study.

[sally06]

So, I am a positive woman, I take therapy and since 2004 my viral load is not detectable (>50): what should I think about the findings of this study?
I agree with the fact that you can't exclude to have one small viral particle going around and being able to infect during an only non protected sex/love experience, but... if you've been shooting on the enemy with guns for years, how can you think that enemies (viral particles) are still "walking around" just waiting for you to kill them?
why should I not have unprotected sex with my negative boyfriend?

However, obviously, I won't. Because I don't want to take the risk and change his life like mine was changed by someone else.
I don't think we've been understanding hiv that much, up to now