Home HIV Tests

Phone counseling versus human contact
by Tina Grady
photography by Megan Bowen

I sat there shaking, shivering at the thought of cutting myself. My heart pounding, I slowly took an alcohol swab, disinfected an area and took the lancet and sliced my finger. Ouch. I had pierced the surface but not enough to fill the test paper with blood. Feeling moisture across my forehead, I wiped away the sweat and prepared to prick myself again. I winced as I saw the blood begin to surface and then began to squeeze the punctured area to drip my blood sample on the test paper.

I don't know why I was so scared. I only had to make a small cut, and I'm not at a high risk where I could get infected with HIV. But still, there was that slight amount of doubt ­ that maybe one of the nurses who once drew blood for a basic test might have used a contaminated needle. I pushed it to the back of my mind. I knew the results of my test would be negative.

I put a bandage on my finger and packaged the lancet in the disposable vial. Slipping the blood-soaked test paper in the pre-addressed, pre-paid envelope, I cleared away the pamphlets and made sure I put my assigned test number, the one I registered over the phone, in a safe place. Now only seven more days until I could call for results. I was number 475-613-72.

Testing for the AIDS virus has become quite ordinary. Instead of visiting a doctor's office, a person can find out if he or she is infected with HIV by buying the newly developed home HIV test at a local drugstore. A prick of the finger, a sample of blood and the test is in the mail. In an age when the threat of AIDS is rampant, medical professionals stress the importance of finding out whether a person has the deadly virus.

But professionals, AIDS experts and those who are HIV-infected disagree over whether these home tests are a step forward from the traditional confidential and anonymous tests, arguing there are both benefits and drawbacks to these new tests. The possibly HIV-infected individual seeking an answer must now decide whether he or she wants the face-to-face contact a person receives at an anonymous testing site or if it is better to receive results and counseling over the phone. The debate continues as to whether receiving an answer over the telephone is too impersonal or if it provides sufficient counseling.

Home Access, approved by the Federal Food and Drug Administration in July 1996, and Confide, approved in May last year, allow a client to anonymously collect a blood-spot sample and send it to a laboratory. Test results then can be obtained by calling an 800-telephone number three business days to one week later ­ about two weeks quicker than a clinical anonymous test. The home tests cost $30 to $50. According to the Center for Disease Control, the home tests are more than 99 percent accurate ­ just as precise as an on-site test. The waiting period is shorter, and the accuracy is equal, but the question still remains: Is the counseling sufficient?

If the results to the home-HIV test are negative, a recording typically bears the news. If the results are positive or if there is a problem with the test, a counselor gives the results.

Dr. Bill Ruby, HIV clinical specialist physician for Akron City Hospital's Center For AIDS Research and Education, says the tests are a good thing. "We are hitting a population that wouldn't get tested," Ruby says. "Some people just don't like the clinic."

Ruby, who is treating about 500 people with AIDS, says about five of the people were diagnosed by home-HIV tests. "Some of the people caught were working businessmen," Ruby says. "They wouldn't have been tested otherwise. Some of them say, 'My physician is a personal friend of mine,' so they don't want to get tested by that person. The choice to take a home test is very individual. For some people, they're more comfortable at home."

From that standpoint, Dr. Thomas Alexander agrees. "If the testing actually does uncover people who are positive and gives them incentive to go to a physician, this in a sense might be a help," says Alexander, an immunologist for Summa Health Care in Akron. "But the question is, 'Will the person who tests positive, the person who sends in blood, get appropriate counseling regardless of the result?'"

Alexander says the concern extends further than where the test is performed. It is important to realize risky behavior and become better aware of a potentially dangerous lifestyle. This can be achieved through counseling, he says. The person, especially if the results are negative, needs to understand the risky behavior that caused him or her to believe testing was necessary. "I'm actually less concerned over someone getting a positive result over the phone than a negative result in a clinic and thinking, 'I'm OK. I can do what I want,'" Alexander says. "The converse has to be put in context. It's important a person realizes he or she doesn't have to be a homosexual or drug abuser to be HIV-positive."

More than this, the question still remains: Will getting a "death sentence" over the phone put a person over the edge?

Chris Sweiger thinks this is a definite risk. Sweiger, a 21-year-old Kent State senior psychology major, participated last year in an AIDS research project where the participants took home-HIV tests. Having never taken the home test before, he wasn't exactly sure what to expect. Sweiger had been tested three times before at anonymous testing sites but later had unprotected sex with a high-risk person.

"In the past, all my tests were negative," Sweiger says. And although he didn't suspect the test would be positive this time, he wasn't quite sure. Three days later, he called for the test results and breathed a sigh of relief.

The results were negative. "The waiting was hell," Sweiger says. Sweiger, like Ruby, says he supports home tests because they provide another option. But he adds, "They are also very impersonal. It's nicer to talk to a face ­ even when the results are negative. I could just imagine getting results over the phone. When a person first finds out he or she is HIV-positive, (the person) is going to have a problem with that. I would feel better about going to a clinic because there is post-test and pre-test counseling."

Gil Kudrin, who has been infected with HIV since 1978, couldn't agree more. He says there is no substitute for the human contact and understanding an in-person counselor can provide.

"The post-test and pre-test counselors are trained to look at body language," says Cleveland-resident Kudrin, who trains HIV test-site counselors. Kudrin found out he was infected with HIV when doctors were first discovering AIDS. He sat anxiously in the lobby of the McCafferty Free Clinic anonymous-testing site with his daughter-in-law waiting to hear his results.

Then the bomb dropped. "You've tested positive," the doctor told him. Tears began to stream down Kudrin's face, and he clasped his hands over his forehead.

"I started to panic," he says. "My first thought was 'I'm going to die from this.' I still believe I'm going to die. It's a fatal disease. But this isn't something you want to hear when you're completely alone. I was with someone I loved when I found out. I don't think there's a good way to tell someone you are going to die, but (it) sure was a lot easier to get the news with someone else there."

Kudrin, who attended Kent State in the late 1970s, is a faculty member of the Boulder, Colo.-based AIDS, Medicine and Miracles group. An active member of AIDS education awareness groups, he also lectures around the nation, during which he voices his opposition to the home-HIV tests. "I think the tests serve to further isolate a person," Kudrin says. "The tests are completely opposite to what people suffering from AIDS have learned. I can't imagine getting results over the phone. Any amount of human contact that people who deal with this disease can get is important."

Unfortunately, if a person goes without contact after receiving the news of a positive result, he or she can become isolated. Kudrin says through research and personal interaction, he has discovered that people who don't receive proper counseling once they receive the bad news many times shut out the world. "To this day, I remember every word my post-test counselor told me."

Renee Axiotis, coordinator of student health promotions for Kent State, says she hopes people will stay on the telephone if they get a positive result. "Some people may want a human there," Axiotis says. However, she also says handling such a touchy manner is sometimes much easier over the phone. And currently, DeWeese Health Center has a sampling of home-HIV tests available that were provided as a trial from the Home Access company. The tests are available if a student requests one or the health center is not able to fit a student in for anonymous testing.

Despite the controversy, Kevin Johnson, director of communications for the Hoffman Estates, Ill.-based Home Access Health Corp., is an adamant supporter of the new tests. He says the tests "are happening," and people should learn to use them and take advantage of a home test's convenience. And in keeping with the criticism that home tests do not provide proper counseling, Johnson argues that home-test companies have a database full of referral information.

During the pre-test period, after a consumer has purchased a test but before it is taken, the instructional information included in the package advises the test-taker to first register his or her number with the company and then listen to counseling information. At this time, after selecting whether to listen in English or Spanish, a person registers his or her test number followed by demographic information (such as age group, ethnic background and the number of times a person has been tested). This helps to provide specific counseling referral services when a person receives the test results, Johnson says. However, participation in the anonymous data collection is not mandatory.

"By collecting information with an automated system, we have built up a database of about 15,000 referral places," he says. "In the pre-test, we ask for zip code and give them the option (by using an automated system) of talking to a counselor."

By using the automated system, Johnson says the home-test company has been able to collect specific data, which would nullify a gripe some medical professional have against the tests. He says that through the automated system, it has been revealed that 53 percent of people using Home Access (brand of home-HIV tests) are being tested for the first time, and two-thirds of them are males. The largest group using the test ranges from ages 25 to 39 and the second-highest is age 18 to 24. And as of the spring 1989, more than 80,000 Americans had been diagnosed as having AIDS, with 18,000 of these people being between the ages of 20 to 29, according to the Center for Disease Control's Department of Human Services.

Consumers of the test are counseled effectively, Johnson claims. He also says the counselors are highly qualified. They are required to have a bachelor's degree in client-centered counseling and more than 50 percent have advanced degrees.

But when told of Johnson's view on the home-HIV tests, Kudrin chuckled a bit. Kudrin says he believes the home-HIV tests are "nothing more than just someone trying to make an an incredible amount of money off of a horrible disease."

Regardless of companies making money or not, it was time for me to call and get my results. Dialing the number, I waited for the automated instructions, not really worried about how the results would turn out. I was calling just to hear how they were given. I knew that negative results are usually given by an automated voice, so I waited for it.

Sure enough, the voice came on: "To hear instructions in English, press one. To hear instructions in Spanish, press two." I pressed one and was instructed to enter my assigned-test number. I did. But the voice came on again. "Please wait while we connect you to a counselor."

What could have gone wrong? Shouldn't I just get a recording? If the results were negative, why would I need a counselor? After one or two very long minutes, a man's voice came on the line.

"What is your test number so I can verify it?" he asked me.

I told him.

Another pause.

"There was an insufficient amount of blood given for the results."

My heart slowed down. I had thought he was going to give me a death sentence, although I should have known better.

Then he asked me how it was during the waiting period. Of course I didn't tell him I took the test as an experiment.

"Hard," I replied, which was all too true considering the terror I felt during that few-minute waiting period.

"How are you feeling today?" he then asked.

"Fine," I said.

Then he offered to sell me a new home-HIV test at half price. I told him I wanted to wait.

"I'll put your test number on a list in case you call back and change your mind."

I mumbled appreciatively and then he said, "Well, is there anything else I can do for you today?"

"No, thanks," I said.

Then I lay staring in the dim light of my room, all alone, looking at the tiny mark on my finger where I had poked it.

I silently thanked the heavens that I didn't have to worry that there was a chance I was HIV-infected, and thought to myself how horrible it must be to have to wait and be put on hold to find out results as important as these.

Tina Grady is a senior magazine journalism major. Her dedication to reporting social issues led her to lance her finger for this article.