“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