Is home HIV testing feasible?
Home-access testing for HIV met with virtually unanimous opposition when it was first proposed in the late 1980s.(1) Today, the Centers for Disease Control (CDC), leading clinicians, gay activists and AIDS advocates have all endorsed home access testing.(2,3) The Food and Drug Administration (FDA) is currently considering applications for licensure of test kits from three companies. The FDA says home-access HIV tests "may be approvable" but has yet to grant a license.(4)
Over-the-counter sale of home access HIV tests may violate laws in some states where face-to-face counseling is mandated by statute. Such legal obstacles may be surmountable; Florida and Texas are already considering bills which would remove legal barriers to selling home HIV test kits.
Actually, "home testing" is a little misleading: customers don't actually get on-the-spot results, the way they do with home test kits for glucose, cholesterol, blood pressure or pregnancy. The tests are really at-home "collection kits" to be purchased over the counter or through the mail. A test kit purchaser pricks his/her finger, puts a drop of blood on a piece of blotter paper, sends it off in the mail, then phones for results and counseling after a specified time.
How is it different?
It's an easy way for people to find out if they're HIV infected. Traditionally, getting tested for HIV has meant a trip to a doctor or clinic, getting blood drawn, then returning for results and counseling. The new home testing kits save two trips to the doctor or clinic. It also makes testing accessible for people who live in rural areas, or inner cities where clinics are scarce, too busy, or a long bus ride away.
Home testing also affords privacy. Some people are afraid to visit a clinic or doctor's office because they fear they will be recognized by neighbors, friends, or family. In a number of studies, at-risk individuals have expressed preference for anonymous systems of HIV testing.(5,6) Home testing has the potential for complete anonymity.
Offering another testing option is a step toward solving the national problem of inadequate HIV testing. An alarmingly high proportion of those at risk (more than 60%) have not been tested for HIV.(7) Getting HIV test results becomes more and more important as means of bolstering the immune system and staving off opportunistic infections improve. Pregnant women are being encouraged to take voluntary HIV tests in light of studies showing that treating HIV-infected pregnant women with zidovudine (AZT) can reduce the rate of maternal/fetal transmission of HIV by two-thirds, although long-term effects on both mother and child have yet to be determined.(8)
Are the results reliable? private?
Millions of HIV antibody tests have been conducted using dried blood specimens.(9) Such testing is highly accurate when laboratory protocols for confirmatory testing and quality assurance mechanisms are followed. False positive results do occur in HIV testing, but at a very low rate. Some test kit blotters mailed to the lab may not have enough blood to test; telephone counselors will need to be trained to advise customers when results are unclear or need further confirmation.
Each test comes with a unique identification number, which patients return to the lab with their blood samples. The lab never knows a name. When calling for results, patients identify themselves by this number alone.
Who will get tested at home?
Home access HIV testing may provide reassurance to the "worried well"-people for whom the risk of HIV infection may be quite remote, but are nevertheless seeking reassurance. If such individuals no longer rely on public sources of testing, resources may be freed up for more targeted interventions with those at highest risk.
Twenty nine percent of the respondents to the NHIS stated that they would be "very" or "somewhat" likely to use home HIV tests if they were to become available; 42% of those defined as at risk for infection would do so. People with fewer years of education and lower income were more likely to express an interest in home HIV testing. Blacks and Hispanics were more likely than others to say they would use home testing.(10)
What are the concerns?
One concern is the adequacy of counseling. At a doctor's office or clinic, test results are usually delivered in person. If a patient feels overwhelmed, or even suicidal, an expert is there to help. Companies selling home test kits will also make counselors available, but they will be miles away on the other end of a telephone. As one critic of home testing put it, "a 1-800 number can't hug you when you're crying."(11)
Yet for some people, the remoteness and anonymity afforded by telephone counseling makes it easier to reveal painful feelings or embarrassing information. There is a long tradition with telephone counseling in crisis intervention and suicide prevention.
The proposed telephone counseling must be compared to the actual experiences of current HIV testing. For many, counseling is already inadequate or missing altogether. According to data from the National Health Interview Survey (NHIS), a third of those who were tested for HIV antibodies got their results by mail (16%) or telephone (17%).(12) Of those who seek testing at public alternative test sites, a third fail to return to find out the results.(13)
Another concern is potential abuse of home test kits. Some fear that employers, family members or health providers could send someone's blood sample to be tested without the person's knowledge. Laws already exist against testing without consent and discrimination on the basis of HIV status. These statutes need to be enforced; new legal protections may need to be put in place once there is more experience with home access HIV testing.
The projected $30 retail cost of home access HIV test kits may prove too steep for many at-risk individuals, although there may be ways to subsidize this cost.
What are the limitations?
A positive HIV test result does not guarantee access to needed care. As the National Commission on AIDS wrote, "for many impoverished individuals gaining entry into a health care and social service system by means of a ticket stamped `HIV positive' is still a cruel hoax."(14) Nevertheless, this is no reason to discourage people from seeking testing. "The lack of good medical and social services for people with HIV infection is an argument for increasing those services, not denying people access to personal medical information."(15)
HIV testing is not an end in itself. A comprehensive HIV prevention strategy uses multiple elements to protect as many people at risk of HIV infection as possible. The real challenge is to ensure that wherever people are tested they have access to follow-up counseling and care. If they are HIV positive they should receive care to stay healthy, and if they are HIV negative they should receive support to stay negative. Home access HIV testing offers one more starting point.
References:
Prepared by Lisa Krieger and Jeff Stryker
Reproduction of this text is encouraged; however, copies may not be sold. The Center for AIDS
Prevention Studies at the University of California San Franciso is the source of this
information. For additional copies of this and other HIV Prevention Fact Sheets, please call the
National AIDS Clearinghouse at 800/458-5231. Comments and questions about this Fact Sheet may
be e-mailed to prevention_factsheets@quickmail.ucsf.edu. ©1996, University of California
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