By PREM MISIR Ph.D

This paper was published: Misir, P., 1999. AIDS PATIENT CARE and STDs, 13(6), pp.327-334.
Stigmatisation and discrimination continue to negatively affect the victims of AIDS. Stigma is a mark of social disgrace that places the infected person apart from those who see themselves as “normal.” Goffman14 perceives the stigmatised individual as having a “spoiled identity” due to negative evaluations by others. Persons consumed by AIDS are seen as having a spoiled identity by some sections of the population considered to be normal. Legislation on its own will not reduce the stigma experienced by people with AIDS. The AIDS stigmatised image is reinforced by incorrect information. This misrepresentation and mythology of the disease need disclosure discussion, and clarification; they should not be incorporated as the basis for social policies. Stigma can be reduced by “normalising” the illness. Attempts can also be made to show that not only “deviants” contact HIV. Conrad15 points out that “we need to develop policies that focus on changing the image of AIDS and confront directly the stigma, resistance to information, and the unnecessary fears of the disease. Given the social meaning of AIDS, this will not be easy.” One needs to believe, however it can be done. Partner notification programs will be much more successful if the stigmatised images of AIDS are reduced or eliminated.

PROVIDER REFERRAL VERSUS
PATIENT REFERRAL
Partner notification programmes, rooted in voluntarisitic choice, have become integral to HIV prevention strategies in most states. These programmes are manifested in terms of either provider referral (third party referral) and/or patient (client) referral. Provider referral refers to a situation in which the patient requests assistance from the public health department to help locate his/her sexual/needle-sharing contacts/partners. Patient referral has to do with a situation in which the patient notifies his/her own sexual/needle-sharing contacts/partners.
Partner notification facilitates primary and secondary prevention of HIV infection, as shown by the following data from a study by the New York City Department of Health.16 In 1996, 572 HIV-positive patients were interviewed in the partner notification programme. The interview yielded 485 contacts with a contact index of 0.9. Of these 485 contacts, 82 previously tested positive; approximately 218 contacts were given pretest counseling and tested for the HIV infection; 185 partners were not tested; 12.2% of the partners tested positive. The contact index in 1995 was 0.8, and 12.5% of the partners contacted were tested and found to be HIV-positive. These data are elicited from third party referrals, which seem to have a fair measure of success.

SWEDISH APPROACH TO
PARTNER NOTIFICATION
Strategies for implementing partner notification were applied at a Gothenberg Clinic in Sweden. General characteristics of the Swedish approach included the following9:
• Partner notification effected shortly after diagnosis
• Sexual history traced to 3-4 years or more
• Concern for civil rights manifested by truly enabling patients to participate
• Patients encouraged to reveal information on contacts, any medical examination done, sex techniques utilised, and condom usage
• Method of referral made via letter to the partner, without disclosing reason for the meeting
This partner notification scheme was successful, and was based on a system of third party referral.
In a follow-up evaluative study9 of the Gothenberg Clinic, it became clear that a partner notification programme is supportable if the following criteria are met:
• Guarantee of good medical care
• Guarantee of good psychosocial care
• Support of diagnosed patients
These criteria will not be met in the foreseeable future in the United States. Indeed, President Clinton admitted that because of a misjudgment relating to probable need, antiretrovirals will not be covered for HIV-infected Medicaid patients until the onset of AIDS.
The follow-up evaluative study in Sweden recommends less as opposed to more involvement by the public health department in contact tracing. The results support the position that a system in which the client is dealt with by clinically active health care providers, where names of patients and partners never get out of the clinic, is better for the person with HIV infection than a system using the public health department resources. Partner notification tasks in this process are also better effected by a specially trained counselor than by the physician.
The New York State law to amend public health relating to HIV infection, Chapter 163, makes no clear provisions for guaranteeing good medical care, psychosocial care, or support for HIV-infected patients. These criteria have been associated with supportable partner notification programmes. The legal situation in New York relies heavily on public health personnel to make provider referral happen outside of the clinic setting. Applying this strategy could not only make confidentiality of information violable, but could result in failure of partner notification programmes. The major objection to partner notification is HIV name reporting.
The lack of anonymity may prevent many people from being tested. This is a very important issue to the HIV-infected community and should be addressed. Various coding systems have been suggested to retain anonymity in the face of name reporting, which should also be mentioned, but these code systems are apparently very costly to develop and implement and imprecise as well. Further, index patients and partners were linked by internal code numbers at each clinic. The index patients’ name and their partner’s test results are not disclosed in medical communications. The HIV test results of notified partners are never revealed to the index patient. Between 1985 and 1991, there was an 18.4% increase in reported cases.

SWEDISH AND AMERICAN
VIEWPOINTS
While these principles of partner notification may work well in Sweden, they can present serious problems within the U.S. health care setting. Value differences exist between the two countries: Americans are more likely to view poverty as an individual problem, whereas in Sweden, poverty is seen as the product of the economic system. In effect, in the United States, emphasis is on “equality of opportunity,” whereas in Sweden focus is on “equality of result.” In Sweden, considerable authority is vested in government, while “less government”, at least regarding this issue in the United States seems to be the case.
Klass17 indicated that U.S. individualism and social and ethnic heterogeneity have produced “fractionalised understandings of citizenship.” In Sweden, citizenship is rooted in solidarity and universal entitlement. This approach is evidenced by two-thirds of Sweden’s $190 billion budget being allocated for healthcare, with everyone being covered through the state. This is not so in the United States. Rodwin18 argues that the United States has a small public hospital policy, and with no national health insurance, a multipayer system exists. Those patients with more resources can afford the best health care. Therefore, for the aforementioned reasons, the principles for an effective partner notification programme as described in the Swedish research, may not have direct applicability in the United States. This point becomes clear when one keeps in mind that many AIDS patients are either uninsured or underserved in the United States. On a more specific note, the New York City Planning Prevention Group (PPG) has had discussions about partner notification. However, so far the PPG has not accorded a precise priority status to partner notification. The research literature19-21 is quite clear about the significance of partner notification in secondary prevention.

References
14. Goffman E. Stigma. Englewood Cliff, NJ: Prentice-Hall, 1963:30-31.
15. Conrad P. The social meaning of AIDS. In: Conrad P, Kern R, eds. The Sociology of Health and Illness: Critical Perspectives, 3rd ed. New York: St. Martin’s, 1990:285-292.
16. Annual Report 1996. New York City Department of Health, Commission of Disease Intervention, Bureau of STD Control.
17. Klass, G. Explaining America and the welfare state: an alternative theory. Br J Polit Sei 1985;15:427.
18. Rodwin VG. Comparative health systems: a policy perspective. In: Kovner AR, ed. Health Care Delivery in the United States. New York: Springer, 1990.
19. West GR, Stark KA. Partner notification for HIV prevention: a critical reexamination. AIDS Educ Prev 1997;9(Suppl B):68-78.
20. Pattman RS, Gould EM. Partner notification for HIV infection in the United Kingdom: a look back on seven years experience in Newcastle Upon Tyne. Genitourin Med 1993;69:94-97.
21. Pavia AT, Benyo M, Niler L. Partner notification for control of HIV: results after 2 years of a statewide program in Utah. Am J Public Health 1993;83:1418-1424.