I heard a mention on the radio the other day about the FDA approving a home HIV test kit. What’s your take on this development?
Do you think it will be effective at reducing the infection rate? How is this going to affect gay dating behavior? What are the rates for false negatives and positives? How might that inadvertently affect rates of other STD infections? That sort of thing.
I am mostly happy about the development. I think people should have as much information about their own health as possible, generally speaking. And knowing one’s HIV status is incredibly important in preventing spread to others. So on balance I’m supportive of home testing kits.
I don’t know a tremendous amount about the home tests, but my understanding is that they are essentially the same as oral swab tests that have been provided by clinics and testing centers for years. As for false positives and negatives, there’s this:
The test is pretty reliable at detecting the disease, returning a false positive in just 1 in 5,000 tests (a 99.98 percent accuracy). Its false negative rate of 1 in 12, however, means a lot of people infected with HIV will still remain undiagnosed if they don’t followup on the OraQuick test with further testing. Still, the test’s effectiveness in detecting people with HIV will bring a lot of people to the clinic who would have likely sought medical help only after the disease had advanced.
The false negative rate gives me pause. One of the potential harms from a home test is that it would yield a false negative, either because it was performed incorrectly or the patient was in the window between being infected and producing detectable antibodies (which is what test kits like these would be finding). A false negative could lead to people engaging in riskier behaviors because they erroneously believe they can’t transit infection.
My other worry is related to this, and concerns the lack of pre- and post-test counseling. While studies have been equivocal in determining how effective counseling is at reducing risk behaviors for HIV-negative patients (citation buried midway here), at least patients who get appropriate test-related counseling from a provider or health educator are advised of the potential for a false negative, and should be advised to get retested in a few months if there is risk of recent infection.
But my biggest worry is about the lack of post-test counseling for people who would get positive results. From the same CDC link above:
HIV-positive test results should be communicated confidentially through personal contact by a clinician, nurse, mid-level practitioner, counselor, or other skilled staff. Because of the risk of stigma and discrimination, family or friends should not be used as interpreters to disclose HIV-positive test results to patients with limited English proficiency. Active efforts are essential to ensure that HIV-infected patients receive their positive test results and linkage to clinical care, counseling, support, and prevention services.
I have told patients they were HIV-positive three times, once in medical school and twice during my fellowship in adolescent medicine. The first patient took the news with surprising calm, particularly considering that it was just before the advent of HAART regimens, when the diagnosis was still pretty dire. (I don’t know what happened to him [I graduated not long after], but hope he’s doing well since the regimens went into widespread use not long after he got his results.) The other two were understandably distraught. (Even though I tried to deliver the news with as much compassion as I could, I still sometimes wonder if I could have done better.) At the time I was working in a large, multidisciplinary clinic, and the patients went directly from their appointments with me to meeting the (awesome) social workers who would be helping them deal with the diagnosis and co-managing their care in the future, along with the physician who coordinated the HIV program using an std risk calculator. They were immediately connected with all kinds of supportive people. While obviously no amount of counseling or education can negate the pain of such a massive diagnosis, it can certainly mitigate some of the isolation and despair that might otherwise descend on a person getting such bad news.
A patient getting a positive result sitting at a kitchen table is on his or her own. I worry about what would happen to those people. Certainly some (hopefully most) would find loved ones to tell and medical providers to care for them. But I think it’s reasonable to fear that some would choose home testing not because of convenience, but because they fear the stigma of going to a clinic or testing center. I think it’s reasonable to fear that a positive result revealed at home will only deepen these people’s isolation at the precise time when they need help and support the most.
Everyone should know their HIV status. Insofar as home testing kits will give people information about their own health, and help them make better decisions about the risk behaviors, I think they are a good thing. But professional services surrounding the diagnosis of HIV exist for a reason, and I worry about the harms that may come from trying to do without them.