HIV Testing Discussion Paper
by Brenda Lein
From Project Inform, for more information contact the Project Inform Hotline, 800-822-7422.
HIV Testing Through In-home Collection
Counseling and Linkage to Local Services
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Introduction
While it may be true that receiving test results and counseling over the telephone with no face-to-face contact is not an appropriate approach for some people, it is equally true that others find any requirement for face-to-face encounters at a site associated with HIV testing to be a serious obstacle in getting tested. People must be empowered to choose which approach best suits their own needs and temperament. Project Inform was the first organization in the country to urge people to get tested anonymously, learn about their HIV status, empower themselves with education, learn about HIV-disease and treatment options and make informed decisions about their health. Principally, it is the position of Project Inform that people have the right to have access to information and choices, and the right to self determination.
According to statistics compiled through the National Center for Health Statistics, at the Centers for Disease Control (CDC), less than 15% of adults in the United States have been tested for HIV. Based on findings from large population surveys of people who had not taken HIV tests, 8% indicated that they intended to test in the upcoming year. When given the option of in-home access to HIV tests, the willingness of individuals to test for HIV tripled to 24%. Half of the people who comprise that 24% included people who perceive themselves to be at risk for HIV-infection. Clearly, statistics show that if HIV-testing through in-home access were available, there are people who may utilize this option who would not otherwise test through existing mechanisms. Furthermore, 31% of people surveyed who had been tested for HIV reported receiving test results either by mail or over the telephone. This statistic does not speak to the quality or appropriateness of how these test results were delivered based on individual's needs. It does speak to the need, however, of formalizing and developing options of anonymous and confidential telephone counseling in this regard, for people who choose to utilize this option and for people who feel phone-based notification and counseling best serves their needs.
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HIV Testing Through In-home Collection
At least three different companies are reportedly developing in-home collection kits. The most talked about test and recently approved test is developed by Direct Access Diagnostics, a division of Johnson and Johnson, and would contain a pre-test counseling brochure in both English and Spanish, as well as paraphernalia for collecting the blood sample, including an alcohol swab, a needle, a Band-Aid, a disposal box, a prepaid postal container, a personal identification code and a toll-free 800 number to call when accessing test results.
Approximately seven days after mailing the blood sample, the consumer may call the toll-free phone number to access test results. Entry into the telephone system would be done through a series of computerized prompts, whereby consumers enter their identification number and are routed either to a counselor or to a menu of informational services, depending on their test results. If a person has a positive test result, they would be automatically routed to a counselor, who would offer standardized counseling services and have access to information about other counseling and health care services available in the caller's local area. If a person has a negative test result, they would be given this information through a recorded message which emphasizes what a negative test result does and does not mean. Additional informational voice mail boxes would be established for people seeking information on specific risk activities and topics concerning HIV transmission risk, and live counselors would be available to people with negative test results if they chose to access them. People with positive test results would be able to access counseling services on an unlimited basis, whereas people with negative test results would have limited access to continued use of the phone-based counseling services.
As currently proposed, the in-home HIV collection kits would be available over-the-counter through drugstores and pharmacies. It is anticipated that the in-home kits may cost approximately $40, retail. The kits may not be allowed for sale in states with laws which prohibit anonymous testing.
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Accuracy and Reliability
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Counseling and Linkage to Local Services
The crux of the issue around opposing in-home collection kits is not an issue of in-person counseling or no counseling. Clearly counseling services will be available. The question is around the appropriateness of telephone counseling and whose decision it is to determine the appropriateness and suitability of this type of counseling to meet individual needs. Project Inform believes that this decision rests with the individual.
There are a number of myths around in-person counseling that need to be acknowledged in the course of this discussion. While it may be true that in-person face-to-face pre- and post- test counseling, delivered by well-trained staff in a culturally sensitive and relevant way may prove to decrease anxiety around test results, may link individuals to services and/or reduce high risk-taking behaviors, it is also true that counseling services are not uniformly living up to these high standards. The availability of quality in-person counseling services varies greatly from test-site to test-site, and from staff person to staff person. Some test sites provide little more than a video, a phlembotomist and a staff person to recite test results, with little or no knowledge of HIV and AIDS, local services or risk reduction counseling. Additionally, people who chose to receive HIV-testing through their family practitioner are not necessarily, currently, being linked to HIV counseling services when they receive their test results. In other words, depending on the quality and types of services available, the type of counseling provided through an in-home HIV collection line may actually prove to be a vast improvement.
Furthermore, often the in-depth counseling required by some people who test positive in most (clearly not all) cases does not take place at an anonymous test site. In many cases, people who are seriously troubled must take the discussion elsewhere, to their physician, to a therapist, to telephone hotlines like those run through Project Inform, the San Francisco AIDS Foundation, the National AIDS Hotline, or to an AIDS Service Organization or another type of Community-based organization. Often times, the counseling provided at the test site is very limited, commonly scripted unless it is being delivered by a trained psychologist. Through our own HIV/AIDS Treatment Information hotline, we encounter numerous callers who in fact are soliciting our services as a form of post-test counseling. Our experience tells us that this form of post-test counseling sometimes is extended over multiple calls and the typical profile of these callers are people who don't feel comfortable talking to someone in person and often times the caller is someone who will not even discuss this issue with a family doctor or health care provider. Therefore, it is obvious that for some people, phone counseling is already a major factor in post-test counseling.
Moreover, the systems which require in-person face-to-face encounters are perceived as a major obstacle by many people who don't wish to be seen or in anyway identified at an HIV/AIDS-related facility, or, in their own minds, a place that is perceived as 'gay identified.'
Finally, telephone counseling around HIV test results may prove more valuable, not less, for some people. For some people, culturally, the need to see a counselor implies that there is something 'wrong' with them. Telephone counseling services provide an option for these people to seek services and information and preserve there need for 'non-exposure', and allows them to 'save face'. Inherently, telephone counseling is not less effective than in-person face-to-face counseling. Clearly, crisis intervention hotlines, battered women's hotlines, suicide prevention hotlines and youth crisis hotlines continue operating because they work and provide options for people in need. Telephone counseling in all of these crisis areas has demonstrated to be extremely effective in meeting the diverse needs of many communities. Criticism that telephone counseling associated with HIV test results will result in high suicide rates is speculation. Certainly there must be community input into the proposed counseling packages. It must be kept in mind, however, that currently the vast majority of suicide and crisis counseling which occurs in general is done over the phone, through suicide and crisis hotlines.
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Access, Options and Affordability
In rural communities, anonymous HIV test sites are often nonexistent, as are skilled professionals with expertise in dealing with HIV/AIDS. HIV testing through in-home collection offers what may be the only availability of anonymous and confidential HIV testing to people in some rural areas. Moreover, in states which don't allow anonymous HIV testing and in states with 'contact tracing', illicit access to HIV testing through in-home collection may prove a more accessible means to gain access to anonymous HIV testing than will leaving the state. Granted, in-home collection kits will not be sold in states with these laws, but finding an organization or a friend who will mail a kit to someone may be easier than traveling to another area of the country, and clearly more affordable.
As currently proposed, HIV testing through in-home collection would be available, over-the-counter, through drugstores and pharmacies. The cost would be approximately $40, retail and wholesale somewhere between $15-20. In the state of California, anonymous test sites are reimbursed about $40 for each HIV test they administer. Costs for tests administered through family practitioners and other health care facilities vary. Whether or not anonymous test sites will offer the in-home collection kit free of charge has not been discussed. Programs to provide access to the kit to low income people who wish to use in-home collection as a testing option still need to be developed, but the company will be donating a number of kits to national organizations which will distribute them to clinics serving indigent people.
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Use, Abuse and Ramifications
Misuse of HIV testing through in-home collection kits is also a possibility among employers and insurance companies, as a means to enable discrimination on the basis of HIV status. Some insurance companies currently screen for HIV through blood tests. In some states this is illegal. People should be aware of the laws in their area and use the law to protect themselves. Some insurance companies routinely screen applicants for preexisting health conditions prior to issuing insurance. Often individuals undergo a battery of tests which are not explained to them, and sometimes the test results are not even given to the individual. The root of the problem here, in many cases, is not that certain diagnostic tests exist, but rather that individuals are not being adequately informed of what is happening or they are not familiar with their rights. If HIV testing through in-home collection becomes more widely available, it will be critical that all people become aware of their right to confidentiality and that mechanisms to insure protection against misuse of this option be strengthened.
Mandatory testing for HIV has vast social, personal and political consequences. Currently, mandatory testing and routine screening for HIV is being conducted in a number of states, in various settings. Results of a study comparing AZT to placebo in pregnant women suggest that taking AZT during pregnancy reduces the risk of HIV+ women transmitting the virus to their child. These study results have sparked a handful of policy initiatives supporting mandatory or routine screening of pregnant women for HIV. Because the decision to test for HIV has enormous personal consequences, mandatory or routine screening may prove very harmful and takes decision-making control out of the hands of the individual. Informed consent, informed decision-making and securing confidentiality and anonymous test results is critical to preserving the rights of the individual. HIV testing through in-home collection does not effect mandatory testing laws, it may, however, enable ease of abuse in these regards.
A few measures are being put in place to decrease the ability of abuse of this option. The company has agreed to put bold warning labels on the product, informing people of their right not to be tested and warning of forced testing. This does not solve the problem of possible misuse of an in-home collection kit. Moreover, if someone is forced, against their will to supply blood, the company will have the ability to block test results if the individual calls with the personal identification number associated with the blood sample. In a setting of coercion or force, however, the individual may not be able to memorize a 12 digit personal ID number, or even know what to look for. The possibility of misuse and abuse exists. There are currently laws which are designed to protect the individual from forced testing or coercion. Laws do not protect people from the trauma of this experience, however. If someone breaks the law, and forces someone to take an HIV-test, they are subject to the judicial system. Clearly laws do not prevent crime from occurring, cannot stop power imbalances and coercion in personal relationships, and simply because a law exists it does not protect against the emotional experience of being a victim of a crime. The possibility of abuse with in-home collection as well as other currently available options, exists and will continue to exist. HIV-testing through in-home collection brings this issue more intimately to the home.
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Bottom Line
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