Hello? You're HIV Positive!
Earlier this year, in TV commercials aired on MTV and shows like Melrose Place, viewers were urged to consider taking a "safe, easy and reliable" home test for HIV if they were at risk. The commercials for the "Home Access HIV-1 Test System" featured attractive, soft-spoken actors who candidly voiced their concerns about home HIV tests, only to have those fears calmed by their "discovery" that the test was safe, easy and reliable. But now, many AIDS researchers, educators and volunteer counselors are questioning the wisdom of using such "home test" kits. Since the tests first appeared on the market two years ago, AIDS activists have debated the ethical propriety of informing someone by phone that he or she is HIV positive. Are the "phone counselors" prepared to advise and comfort an emotionally distraught person to whom they have just delivered such devastating news? That, of course, is not the scenario depicted in those commercials; however, it is a scene that is being played out in clinics and doctors' offices around the world.We decided to conduct our own informal "live" test of the service offered by the sponsor of those commercials, the Home Access Health Corporation based in Hoffman Estates, IL. An HIV-positive friend, someone who has known about his status for some time, agreed to submit a sample of his blood on the "blood specimen" card contained in the $40 Home Access test kit, and then to permit me to call for the results using his randomly assigned test number. After the seven-day waiting period had expired, I called, knowing that the test results would be positive for HIV.Calling MaryAfter dialing the toll-free 800 number, I am greeted by a recorded message asking me what language I wish to receive the information in. After pressing "1" for English, I am instructed to key in the eleven-digit number that was randomly assigned to my kit and that corresponds to the same number that appears at the bottom of the blood- sample card we submitted. The automated voice repeats the number for confirmation; then I am transferred to another automated voice that asks me if I would like to be included in an anonymous survey. I pass. Another automated voice asks me if I would like to hear a five-minute tape about HIV and AIDS. Again, I pass. At this point another automated voice informs me that all counselors are currently busy and asks me to hold for the next available counselor. I continue to wait, my ear filled with the sound of baroque music. Finally, I did hear from a human being, who promptly reduced me to a set of integers. "Hi. This is Mary. Could you please repeat the last five digits of your Home Access code number?""Um. Hi. Okay." I read off the numbers. A few seconds go by and then she quietly informs me that I am HIV positive. "Ohmigod! Are you sure? How can that be?" I say, as the panic rises in my throat. Yes, I'm "faking it," but my distress based on the fairly simple emotional transference of putting myself in the shoes of friends and acquaintances is genuine. "How accurate are your tests?" Mary tells me she understands that I am very upset and confused at the moment. She also tells me the tests are regulated by the FDA and there are never any errors or mistakes."This was a mistake!" I wail. "I should have never taken this test to begin with. I'm just going to get off here. I'm going to hang up!" Mary asks me to wait a minute and repeats her observation that this is a very confusing time for me. She then asks me to make a contract with her. "A contract?" I ask, and this time my confusion is not feigned. Mary says the counseling line is open 24 hours a day, seven days a week and that she wants me to make a contract with her to promise to call back when I feel able and ready to talk. I tell her I need to stay on the phone with her a little longer. Mary offers to give me the names and numbers of physicians in my area who can assist me."Obviously ... I mean, I guess you're not a doctor, right? Are you a counselor? Are you a trained counselor?" Mary tells me she is not a physician, but that she is trained as a "client-center counselor" and is equipped to help me get any information I may need. "Do you think I should get retested?" I ask after a few moments of silence. She says that this is often advisable and that I am welcome to retake the Home Access test or, better, I can contact a physician in my area. "But, as you said yourself, you are regulated by FDA and there are never any errors made, so why should I bother getting retested?" Mary points out there may be other medical conditions I have that could make the test read falsely positive. When I ask what those "conditions" are, she says there is no way for her to know what mine may be, and again suggests that I contact a physician as soon as possible. By now, my HIV-positive persona has taken over, persisting with this line of questioning, and hoping against hope that there might be some other reason for the HIV-positive reading. Finally, Mary mentions one disease that might cause a false reading: lupus. "Lupus! What the hell is that?! Can I die from that?"Mary calmly tells me to contact a physician in my area for more information. I tell her that I am scared. I tell her that I have had only a few unsafe sexual encounters and that they were with men I did not know. I tell her I have a girlfriend who is unaware of this and that I don't know how to tell her I am HIV positive and that I might be gay. Mary responds sympathetically and informs me there are several support groups in my area that can help both me and my girlfriend. She tells me that it is important to inform all my previous sexual partners about my HIV status and she is glad that I am thinking along those lines. "You've given me so many numbers and names of agencies I should call for help, I don't know what to do or who to call first! And what am I supposed to do, just call one of these people up and say, 'Hi, I'm HIV-positive and I need help?!'"She tells me again that she understands this is a confusing time for me and she reminds me again that the phone lines are open 24 hours, seven days a week if I ever need to talk or have other questions. She says I can even request to speak directly to her if I would prefer that. Mary also tells me that there have been some medical breakthroughs with AIDS treatments, such as protease drugs. They won't cure you, she informs, but for some people they reduce the viral loads to sometimes untraceable levels. "For some people?" I ask. "Why do these new drugs work for some people, but not for everyone?" Again, she tells me that she is not a doctor and that a physician would be able to determine what kind of treatment I should follow. I decide to return to the subject of my "girlfriend" and ask again how I should go about telling her that I am HIV-positive. Mary offers to engage in some role playing she would play me and I would play my girlfriend. "Okay," she says. "You call her over. You tell her you have something very important to tell her. You say, I need to let you know that I am HIV positive." "What? I can't just blurt it out like that," I say. Mary tells me that she understands and that it will take time for me to adjust and she reminds me again of the support groups. I respond that everything seems so hopeless right now, that I should have never have bothered to take this test in the first place. She hums sympathetically into the phone and tells me that I have done a very responsible thing. I tell her I have no idea how I'm going to start getting treatment, since I am a college student with practically no money. I'll have to tell my parents about this and how am I going to do that? Mary urges me to call the number for Cincinnati AVOC, and assures me that someone there will be able to help me with any problems I may have."I'm going to hang up now," I say, as ominously as I can. She agrees that now may not be the best time for me to discuss any of this, repeating that the phone lines are open 24 hours a day, seven days a week. A moment passes, and then she asks me, "What are you going to do when you hang up?" I tell her I don't know. She asks me to consider carefully all the information that she has given me, then says she has one final telephone number she wants to give me. I write it down and ask her what the number is for. Mary tells me it is the number of an automated line so I can call and tell Home Access if the references given to me by the counselor proved useful and helpful. We exchange good-byes and hang up.Would You Like Some Free Coupons With Your Death Sentence?At no time did Mary do anything misleading or give me any incorrect information. The agencies she indicated, such as AVOC, are in fact essential resources for anyone who is HIV positive and living in Cincinnati. But this experience had been unsettling for reasons that are difficult to document. Was Mary sympathetic? Yes. Was she sensitive to the gravity of the situation? Yes. But Mary was sympathetic and sensitive in the way that all customer service representatives are sympathetic and sensitive. A few years back, I tried a new laundry detergent that made my skin break out in an angry red rash. It was quite painful, so much so that I felt compelled to call the 800 number on the back of the detergent box and complain, something I rarely take the time to do. The customer service representative was attentive, expressed interest in my situation and offered to mail me free coupons for alternative detergents. But, somehow, she wasn't able to make me feel much better. The rash still hurt and that was scaring me. The rep did not seem to pick up on this, nor did she offer what I was really seeking: concern and comfort. Instead, I got a few random words of encouragement and some free coupons.That is precisely what it felt like to talk about "my" HIV-positive status with Mary. I felt like I was being "handled" as a Home Access customer who was calling with a "problem" I had with one of their tests the "problem," of course, being that it showed an HIV-positive result. Like the detergent company rep, Mary had offered a few general words of encouragement and offered phone numbers instead of coupons. But, as someone burning with fear and uncertainty, I quite certainly did not feel comforted. Why after I'd been "informed" of the test results and I'd "panicked" and threatened to hang up did Mary did not seem concerned to keep me on the line? Was she seemingly more concerned that I agree to a "contract" to call her back when I felt able and ready to talk? What if the devastating news drove me to commit suicide (a scenario feared by many AIDS educators)? What good would a "contract" be then, except, perhaps, to secure Home Access Health Corporation against any possible lawsuits? I also found disturbing Mary's suggestion that lupus might have caused a false reading. She is not a physician, as she herself readily admits, so why would she venture a speculative medical diagnosis that may give false hope, cause great uncertainty and generate new fears? She appropriately mentions protease inhibitors as a source of hope. However, when pressed about why some people experience good results with these medications and others do not, she could offer no advice except to consult a physician.Again, such counsel did little to comfort me 15 minutes after "learning" the tests were positive. Nor did her assurances about how reliable these tests results are because the laboratories are regulated by the FDA and that no errors are made. Well, given that federal inspectors can occasionally allow e coli- contaminated hamburger to slip past them, Mary's response caused me to experience even more distrust and anxiety. And what about those automated recordings? We're all familiar with the old, sick joke about the man contemplating taking his own life who calls the suicide hotline only to be put on hold. Unfortunately, the joke is played out here in the form of those senseless and time-consuming automated menus that explain the purpose of partaking in the sampling survey and offer information on HIV and safe sex. True, you have the option to bypass these recordings, but then you end up on hold, waiting for the "next available counselor. "It should be noted that I was not put on hold for more than a few moments. Nevertheless, these automated recordings do nothing but heighten and intensify the pressure of waiting for those results. People purchase these home tests to get answers not to become part of a survey and not to be lectured about safe sex.The Price of ReassuranceJust who is using the home test kits? The Home Access company says its customers are more likely to be male than female. With the cost of such kits ranging from $30 to $50, it is fair to speculate most Home Access customers have a middle- to upper-class income. Remember those commercials on MTV and Melrose Place? With that viewership i.e., a low-risk group of young, hip, middle-class white consumers as its target population, it is no surprise that Home Access can boast that 99 percent of their users test HIV negative. It appears that the vast majority of Home Access customers are, in essence, buying reassurance. Supporters of these tests argue that providing a ready means of determining one's HIV status can only help contain the virus. But what about that 1 percent who, out of fear or ignorance, actually do learn of their HIV positive status over the phone? Is the risk to the mental health and stability of those people justified? As Martin Delaney of Project Inform San Francisco (an AIDS information/referral service) and supporter of the home tests, states, in a recent USA Today article: "You can get good counseling or bad counseling anywhere. There's always been a large portion of people who get the news from some clerk in a doctor's office who knows nothing about HIV." According to an article in Spin magazine, "increased suicide rates among HIV-positives tend to occur at the onset of symptoms, not at the news of the test." Perhaps AIDS educators have been over zealous in their concern about the home test. The fact is that, to date, there have been no reports of any suicides linked directly to home test kit procedures or phone counseling.The bottom line is that taking a home test for HIV is a private and personal choice that each individual must make based on an inventory of his or her emotional limits and expectations. And based on one's answer to the question: are you prepared to hold your breath, dial the number, sit down or hold on to something as "Mary" gives you the information that very well may change your life?