It seems these days that one can't read an article about HIV prevention without running into references to the "Test and Treat" approach and its possibilities of ending the HIV pandemic. I'm not going to examine the whole of that issue here, but I hope to open a can of worms at one end of it. That end is the beginning: testing and what we might do to revolutionize the accessibility of testing to those who might have been exposed to a chance of HIV transmission.
Our cousins in France (as we like to refer to them here in Québec), at the Warning, are now raising the once (and still?) taboo issue of home testing for HIV. I think it's worth exploring the possible advantages and disadvantages of that approach and whether it might be helpful in some way to add it to our basket of testing options.
No jurisdiction currently allows testing without the involvement of health care professionals. There are some openings to the involvement of community health workers, notably in France, where an exception has been made to allow for community-based testing efforts, particularly in the gay community. This doesn't mean, however, that it is impossible to obtain your own rapid testing kit: a colleague of mine managed to order two test kits that were delivered in the mail from Malaysia, and you can't miss the internet ads that offer rapid test kits. (Ediitor's note: see video below illustrating use of one such test.) The problem is that they are not currently legal, not even for self-use.
This official illegality leads to another concern: quality control. If these tests were legal to obtain, there would likely be some government oversight with respect to the quality of the tests. HIV tests generally require a high degree of sensitivity and specificity. These criteria can be explained in this simplistic fashion: sensitivity is the percentage of tests that will come back positive when HIV is present and specificity is the percentage of tests that will come back negative when HIV is not present. False positives and false negatives can cause big problems, so these measures of quality control are ongoing for the test kits that are used in the health care system. Clearly, this monitoring does not take place for products that are not approved for use.
One hurdle to get past in allowing home testing is ensuring that people understand the nature of the rapid test. It isn't rapid because you can use it the day after your exposure; it is rapid because it can give results quickly when testing after the traditional window period. The rapid tests measure antibodies, which take time to develop in the body. There are other options that can give results sooner after an exposure if that is a concern, such as fourth generation ELISA tests which include tests for certain other proteins that develop more quickly than HIV antibodies. These, however, are a little more technically complicated and not available in the form of easy-to-use test kits. This is all information that can be explained to anyone with a great degree of comprehension, so it shouldn't be a reason for forbidding home use of the rapid test.
Indeed, there are other forms of medical testing that are made available to people to use at home. Diabetics monitor their blood sugar levels with great regularity, and on the 'diagnostic' side of things, women have been able to obtain and use home pregnancy tests for quite some time. These things do have regulation, and therefore some degree of assurance of quality that ought to be applicable to HIV home tests, too.
Because of the stigmatization of HIV infection, we have set up some very strict guidelines regarding pre- and post-test counselling. Concerns include ensuring that people understand the nature and impact of the test before agreeing to it as well as ensuring that a test result is not disconnected from appropriate interventions — counselling and information regarding the person's personal practices in the case of a negative result and that plus connection to care in the case of a positive result. This is a little harder to envisage in the case of a self-administered test. Even if the test is technically appropriate (sufficient sensitivity and specificity), who will help the person to manage personal reactions to the result? Is there a risk of people concluding that they are somehow protected from HIV if they are negative after repeated exposures? What about the emotional crisis that might follow a positive result? There is already movement toward simplifying or streamlining some of these requirements, particularly for those who have previously tested, and that should help to speed up the process for many.
It's often easy for those of us on this side of a positive diagnosis (the positive side) to conclude that HIV has become a manageable chronic condition and not the drama that we once thought it was, but the home testing issue is no longer about us. It is about people with widely varying degrees of exposure to information about HIV and the impact of living with (or managing) HIV, and if a rule is to change it has to take into consideration the disparities of understanding in the whole population.
One possibility for opening the door without completely removing it from its hinges would be to make the home tests available to people we hope to test frequently (i.e.: those who have frequent and ongoing exposure to the risk of HIV transmission) by prescription, at least in the form of a pilot project. This approach would ensure that the initial information and counselling would be complete, that connections to care were already in place for future use, and might offer the possibility of lightening the burden on the health care system while simultaneously stepping up regular testing.
Keeping control of the door might be necessary for reasons other than just understanding the science of HIV testing, however. Some of our biggest problems in HIV, persisting after the development of effective treatment options, are human rights problems. What could be the human rights implications of home HIV testing? Think about employment discrimination or other forms of social exclusion. If home HIV tests were to be available over the counter or off the shelf, what would stop people from using them on others over whom they exercise some form of control? As a society, we have not been particularly effective and certainly not proactive at righting the wrongs of prohibited discrimination, so I have very little confidence that we could prevent home HIV test kits from being misused to discriminate and exclude if they were widely available.
This is the issue that really puts the brakes on home tests for me, even if I have been led to a place where I would be ready to accept home tests by prescription for frequent testers. I work with some brilliant people who have really helped to shape and re-shape my own opinions about this topic, and I like to think that my attitude is evolving.
I think we are ready to have this debate and we ought to get to it.
Post-script:
My colleague kindly allowed me to purchase one of his tests and helped me film myself testing. I thought it was important to do this to show that it could be done, it could be done with humour (particularly when the result is not in doubt!) and that undetectable viral load in the blood is not undetectable antibodies on an HIV antibody test. Since the usual “how-to” videos tend to show negative results, I also wanted to show what a positive result would look like. I’m itching to use the photo as my Facebook profile picture (after PositiveLite publishes this article, of course!)
So . . . first the test - then the test results!