“Solitude is fine, but you need someone to tell that solitude is fine.” – Honore de Balzac
Scientific researchers are a special breed. They’re like thoroughbred racehorses or Afghan Hounds; exceedingly skilled at what they do, but often completely oblivious to anything outside of the scope of their work. Secretariat was the fastest thing in the Western Hemisphere once upon a time, but he always had his blinders on and was only capable of doing two things. He could run fast and sleep with fillies to make other horses that ran fast. Afghan Hounds are possibly the most beautiful breed of dog in the world. Their coat is enough to make Vidal Sassoon have a minor stroke and their slender, angular form brings to mind haute couture fashion and refinement. But, good lord are they some of the dumbest creatures in all of God’s green goodness. Likewise, scientific researchers are brilliant investigators and inventors. It is through the scientist that we find the cures to disease and learn how these maladies effect the human body. And, as good as researchers are at discovering the biological impetus of disease, they are equally inept at devising ways to implement their treatments in communities.
Last night, I attended a session on HIV testing and the profound gap between those who know their status (14 million) and the actual number of people with HIV worldwide (34 million). I didn’t ask how they can possibly know the number of people who don’t know their status, but I’m sure there’s some hyper-complicated algorithm for figuring it all out. That’s what science is good at. What science is not good at is finding effective ways to get those 20 million people who are unaware of their positive status tested. Sure, they can do it with ease in the vacuum-packed world of laboratory testing, but doing it on the streets of Oakland and the backroads of Nigeria is a different beast.
For instance, Rachel Baggeley of the World Health Organization gave a presentation that touched on the new WHO recommendations that people get tested as couples rather than as individuals. At its core, this idea is well-intentioned and makes a great deal of sense. If someone who is newly diagnosed as positive has someone to support them from the very instant they find out, then they immediately involve their personal support system and are more likely to remain linked to care. That’s what happens if it all goes right. But, what if it doesn’t all go right? What happens if a couple comes in to get tested and one person comes back positive while the other one comes back negative? I would like to think I’d be supportive, but if I’m the negative partner, my first thought is most likely either, “who the hell have you been messing with behind my back?” or “have you known about your status and not told me?” So now, instead of just having to deal with the devastation of discovering you’re positive, you’ve got to mend fences with your partner from the get-go.
Let me say that it’s not that I don’t support couples HIV testing. I’d personally rather have non-romantically involved friends accompany one another to testing, but there is the potential for fantastic support and increased linkage to care through couples testing. However, as one of my former co-workers at The JACQUES Initiative in Baltimore is fond of saying, we will be trying to solve problems 10 years from now that were caused by solutions we put in place today. We don’t need a gameplan for what happens when things go according to form—we need one for when things fall apart. And, while the idea of a couple having a knock-down, drag-out in the lobby of a clinic isn’t the most pleasant site to imagine, it frightens me even more when there’s no one around.
As many of you know, the FDA recently approved the use of OraQuick HIV testing kits for sale over the counter. This has a potential to be a game-changer and to allow millions more people in the US to test themselves without fear of stigma or the inconvenience of waiting in a clinic. This is a huge breakthrough and it seems only natural that the FDA should make the tests available to the public. But, no one has ever explained to me what happens when a test comes back positive. One of the largest problems with HIV/AIDS care in America is our poor numbers with regards to linkage to care. Of the nearly 1.2 million Americans with HIV, only about 62% of them were linked to care, while just 41% actually stayed in care. And that was when people are being tested, for the most part, in healthcare settings where there should be fairly easy access to medical professionals. What do you think is going to happen when someone finds out their positive in their kitchen?
Who are people going to talk to when their at-home test brings back a positive? Not everyone has loved ones around them to support them. Some people would rather have one of their limbs hacked off with a nail file before they told their partner or family. Is there going to be a toll-free phone number on he back of the package for an HIV crisis hotline of some sort? How will people know where to go to get the best care they can? What if they aren’t insured or have outstanding medical debt? These are questions that not only need to be asked, but answered.
As it was mentioned multiple times during the session, testing people is worthless unless we get them into treatment. It’s hard enough in a clinical environment, but with at-home HIV testing, we also have to answer the question, how do we reach someone who we don’t even know is there? We won’t be provided with a list of everyone who buys an at-home HIV testing kit. There will be populations who are more likely to be diagnosed with HIV, but we must assume that everyone who doesn’t come into clinic and has a working set of genitals could be positive. In the end, this about routinization of testing and opening up the public dialogue regarding HIV so that when someone does get that positive result at home, they not only know where to go for help, but don’t feel ashamed about doing so. Science can’t help us with that.
Categories: HIV News
This is a really important point that I haven’t seen many people make before. Married women with discordant HIV infections are in serious trouble when they get diagnosed in parts of the world where the husband is more likely to be the breadwinner and could kick her out of the home, and might even reject her if she were getting tested because she was pregnant, since he might jump to the conclusion that it wasn’t his baby either. Africa is stereotypically a region where men have a lot more social and economic power than women, on the whole this is a pretty accurate generalization as far as I know, unless you count opportunities for informal sex work as empowering, because there seems to be a serious issue with economically motivated sex when women see their families facing a financial emergency (like a sick child, if they can’t afford to take the child to the hospital) with no other avenues for getting cash on short notice. Not that economically motivated sex doesn’t go the other way sometimes, but I would see the gender imbalance in power in that region as one likely explanation for women carrying higher rates of HIV overall, because they have less negotiating power in terms of who they decide to have sex with and under what circumstances (if he doesn’t feel motivated to use a condom, she may be out of luck).
Couples testing could help ensure there is moral support when someone is diagnosed, but I can think of other public health priorities that might explain why it is being recommended. For one thing, promoting couples testing as the social norm for people who need to get tested could help encourage more people to come in for testing than otherwise would do so by discouraging secrecy between couples about going to get tested. But it is also a way of promoting timely disclosure so that discordant couples can start trying to avoid sharing HIV by using treatment and/or barrier protection. In fact I’ve seen at least one review article that found a relatively large proportion of couples in Africa across different study populations are discordant. It’s not just a question of infidelity because HIV is inefficiently transmitted in heterosexual exposures, so a monogamous couple in which one person was originally already positive from a previous sexual relationship could be discordant for quite some time before the other partner contracted HIV. But it could easily be perceived as infidelity, and if the previous relationship hadn’t been discussed between them it might still cause an upset either way.
So I agree, couples testing is ethically problematic, it could have a lot of unfortunate consequences that need to be weighed against the benefits.
I prayed that, this HIV thing be subdued sooner than later.