HIV Self-Testing in the Clinical Setting: Are We Prepared?

therapist reassuring a woman about an illnessImagine that, as a therapist, someone you have been working with for a month comes to her next session and reports to you that she has just tested herself for HIV at home and she is HIV positive. Do you have the information you need to handle this? Did you know that it was even possible for people to test themselves at home for HIV?

Now, imagine another scenario: you have been seeing someone professionally who, you suspect, may have been exposed to HIV given his sexual and drug history, but he has clearly stated he will not go to a clinic or physician to get tested because no one knows that part of his life. Are you aware that there is now the option of self-administered testing that can be done anywhere, including your office? Do you know the information this test can give in terms of accuracy?

For much of the first three decades of the HIV/AIDS pandemic, HIV testing was restricted to certain organizations and professionals. Initially, this was because only those who were considered at risk for HIV were encouraged to get tested. In 2006, realizing that this approach was not effectively stopping the pandemic (which has remained at an estimated 45-60,000 new infections annually in the United States since 2000), and that this approach perpetuated the stigma that continues to plague HIV prevention efforts, the Centers for Disease Control announced recommendations that all people ages 15-65 should be tested for HIV. This recommendation was affirmed by the US Preventive Service Task Force in 2013, essentially putting a bit more weight behind the 2006 CDC recommendations.

Over the past few years, HIV testing has been expanded to include places such as pharmacies and DMVs (notably in Washington, DC), as well as mobile testing vans on street corners, festivals, and late-night bar areas. Policies in the US have been enacted requiring that all pregnant women be tested for HIV and, more recently in places like the Bronx and Washington, DC, efforts have been made to test all people who have visits to hospital emergency rooms. Despite all these efforts, the rate of HIV testing has not expanded and the rate of HIV transmission remains at the same levels.

In July 2012, the Food and Drug Administration approved the sale of over-the-counter, self-administered rapid HIV tests (OTCRT). This approval makes HIV testing more portable, accessible, and confidential than ever. However, through a personal survey of HIV/AIDS organization websites and in conversations with people at meetings and events, it is clear that the knowledge of this remains relatively obscure.

Among the reasons given for this silence from organizations is the concern that people need counseling, that people will not use the test correctly, that a person without adequate supports who finds out he or she is HIV positive will hurt himself or herself, and that this test is cost-prohibitive. While there may be some merit to these concerns, research and anecdotal evidence does not support them. In some places in the US, people who are not high-risk (as assessed by pretest questionnaires) are given options that cost 2-3 times more than OTCRT; studies have shown that some of the highest risk/never tested individuals want a self-testing option; and further recent studies have indicated that the counseling that accompanies HIV testing is not effective in altering risk behavior, which is its primary objective.

Even in the face of these concerns, remaining silent on all options—especially in the cases where alternatives are more expensive and/or unnecessarily intrusive—is disconcerting. As one FDA official related to me in personal communications, the fact that HIV testing is a significant source of funding is one of the reasons for this silence; the FDA is protecting “turf.” I have found that myopia is as much a function of this as is protecting turf, but the result is the same: an entrenched HIV-testing system that seeks to overcome stigma and get everyone tested by targeting risk groups (perpetuating stigma) and restricting testing to high-risk individuals while ignoring mention of the full options.

Despite the lack of leadership from HIV/AIDS organizations in raising awareness in the general population about all the ways that people can find out their HIV status, people are finding out about self-testing options via social networking and targeted advertising (such as on MTV and Comedy Central). For this reason, it is increasingly important that the counseling and helping professionals, regardless of their prior level of work with HIV, recognize that we may now find ourselves as the first point of contact with regard to HIV testing. As with so many issues that come up in therapeutic relationships, we have an ethical responsibility to have some basic information. Among the most important information includes:

  • Understanding that OTCRT are screening tests, not confirmatory. The rate of false positives is about 3%; false-negatives are less than 0.1%. Confirmatory tests are essential. Unfortunately, at this point, most of the traditional HIV testing centers do not recognize the existence of self-testing, so there is not a direct access to a confirmatory test at these sites. Hopefully, through advocacy efforts, this will change (CDC has already recommended such changes). Until then, the best recommendation for going directly for a confirmatory test is with a medical doctor or hospital.
  • Having a list of basic referrals for HIV-specific supports such as peer groups and physicians.
  • Knowing the basics about HIV—how it is spread, precautions, the importance of treatment in decreasing risk of transmission, prognosis of living with HIV, etc.

In addition, the portability of OTCRT brings an opportunity for us to better serve our clients. If people getting tested should have counseling, then OTCRT allows all counselors and therapists to be a part of the testing process. HIV has long been a part of a bio-psycho-social syndemic, most frequently co-occurring with depression, substance abuse, and/or poverty. It is estimated, for example, that people who use drugs on a regular basis are 30-50% more likely to contract HIV than those who do not use drugs but are just as sexually active. Furthermore, we already know that people with mental illnesses are more likely to use drugs (for more on this, see the work of Dr. P.N. Halkitis, including Methamphetamine addiction: Biological foundations, psychological factors, and social consequences, 2009). In addition, given the high rates of impact of HIV on marginalized populations (gay men, people of color, women, and drug users) there is a heavy cultural stigma that impedes them from accessing testing at public facilities.

As clinicians, we are already working with many people who may have several of these issues in our work settings and practices. We can now help to facilitate one potential aspect of our clients’ lives: HIV. As with all syndemics, it is important to work with clients to identify the issues that are the most likely to be overcome and/or managed, and remaining HIV-negative (or healthy with HIV) is often one such achievable goal.

Keeping the HIV-testing experience within the context of the therapeutic relationship can have the added benefit in the therapy process by deepening the creation of a safe, nonjudgmental environment in which other issues can be further explored. It can also be an empowering experience for clients to be able to do their own self-assessment of their risk and their own status, without the intrusion of the traditional testing centers—especially if an unknown person is asking intrusive questions and discerning risk based on an outdated mode of thinking.

The implications for the counseling professions are many and varied, both in terms of responsibility and potential. Clinicians should be considering the scenario of a client coming to a session and reporting that he or she has just tested positive at home. Does the clinician know that this is even possible, let alone what this really means? Furthermore, if you are a clinician working with teens and young adults who are sexually active and engaging in alcohol consumption, or with gay men who are using crystal meth, or women who are in abusive relationships, you may now be the safest person for that person who has never had an HIV-test. You may be the ideal person to walk that journey with them.

Are you aware of the ways you can do this, including sitting in your own office with the client as he or she uses a self-test? Do you have the resources you need? Hopefully, the information given here has opened you up to the possibilities, as well as the ethical responsibilities we all have in this new era of testing that includes self-testing and what we need to do to be positive allies on behalf of our clients and in the work to end the HIV/AIDS pandemic.

© Copyright 2013 All rights reserved. Permission to publish granted by Bradley Ogilvie, MS, LPC, LMFT, HIV / AIDS Topic Expert Contributor

The preceding article was solely written by the author named above. Any views and opinions expressed are not necessarily shared by Questions or concerns about the preceding article can be directed to the author or posted as a comment below.

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  • Laurence

    November 6th, 2013 at 12:42 PM

    I don’t think that self testing and the ability to do that is a very good idea at all. Forget the fact that you could have someone come into your office and tell you that they did this, you should at least have the basics that you can give them for some instant support. But think about someone doing this home alone, with no one there to support them and maybe they don’t even work with a therapist. Who is going to help these folks through receiving that kind of information? I realize that there is a better chance that someone could get tested in this way, but is this really the direction we want healthcare to go in? People doing tests on themselves at home and then who knows what could happen if they receive what they perceive to be a devastating result? No, I think that this is terrible and is definitely one thing that should be left to a clinical setting.

  • Brad

    November 6th, 2013 at 3:00 PM

    Thanks for your comments. I understand your concerns about this, and want to be clear that I am not necessarily advocating that people sit at home and test themselves. I am advocating that all clinicians can now be a part of sitting with people as they either consider and/or implement their options. It is just as important that clinicians know that self-testing is not an idea, but a real option that is out there, and our obligation is to be as supportive, informed and empowering as we can.

    The simple fact is that many people are already self-testing for a number of reasons (convenience, privacy, flexibility, ease), and this will only increase as the manufacturers continue to market it. Our clinical role is to be proactive in helping do what we can to foster a safe environment.

  • Katie

    November 7th, 2013 at 4:40 AM

    I understand that this is a reality and think that all we can do now is to be prepared for those patients when they come in.
    You have to be educated and understanding, and have many resources available to them so that when they have questions and need more information you will be there to have that on hand for them.

  • jennifer phillips

    November 7th, 2013 at 12:30 PM

    I pretty much believe that as a therapist or a counselor you have to be ready for anything that your client is going to throw at you. That takes a lot of work on your part, being prepared to handle all of that or at least knowing enough to refer this person to a community resource that could be of more helped. But I think that you have to be ready for anything that comes your way.
    I suppose that there will always be those things that you haven’t prepared for ahead of time, but with a disease like this that is still impacting the lives of so many people on a yearly basis, you juat have to be ready for that and the unique situations that these patients are living with.

  • Caludia

    November 8th, 2013 at 4:42 AM

    Why does htis have to be a bad thing? If more people have access to self testing then I would argue that this increases our chances to educate them about their HIV status and to hopefully halt the progression of HIV as a deadly disease. The more people who are aware of their status then perhaps they will see just how important that it is for them to maintain safe practices so that others are not then exposed to the deadly virus. These tests have to be affordable and accessible, and I just happen to think that if someone is responsible and resilient enough to seek this out then they are going to prepared to deal with whatever the test results are. Of course they will need some help but that doesn’t mean that they won’t initially be prepared for the answer.

  • Brad

    November 8th, 2013 at 12:42 PM

    Caludia – Thanks for your comments. I personally think it is a great thing, given that the current testing strategies and options have stagnated. More importantly, whether we think it is good or bad, it simply is there. As you, Jennifer and Katie, point out, there are things we need to know so matter what we feel about it, we respond ethically and maximize the benefit while minimizing the potential harm. I’ll be going into more of some of the details over the next few postings.

  • kate r

    November 9th, 2013 at 5:19 AM

    since this has been around for so long, then most therapists are probably well equipped to handle feedback like this

  • Brad

    November 9th, 2013 at 11:01 AM

    Kate – I would be interested to hear how much what you say is true about most therapists. I have actually found very few that know it’s an option. If you do find otherwise, can you share that as it would be an encouraging sign.

  • kate r

    November 11th, 2013 at 4:36 AM

    How about maybe I should have said that I HOPE that they are able to handle this kind of self reporting? For the patient’s sake?

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