September 22, 2006

HIV Is Still An Exceptional Disease

Posted at 12:21 pm (Pacific Time)

The Centers for Disease Control and Prevention (CDC) has formally called for a dramatic expansion in HIV testing, such that medical patients between 13 and 64 will be routinely tested unless they opt out. Separate written consent won’t be required and pre-test prevention counseling (which ensures that the patient understands how HIV is transmitted and prevented) will be dropped.

Knowing one’s HIV status is a good thing, provided the patient can effectively use the information. HIV-infected people need to be able to obtain ongoing treatment (including, but not limited to medications), and need to be able to take steps to protect their sexual partners from infection. Those who test negative need to understand that they can still get infected, e.g., if they engage in unprotected sex or share needles.

An important question to ask about the new CDC guidelines is whether they’ll meet these needs. By eliminating written consent and pre-test counseling, it’s all too easy to imagine that patients in busy emergency rooms will be tested without really agreeing to it and without being adequately prepared for the results.

Here are some other important facts about the social realities of HIV.

  • HIV and AIDS are still stigmatized in the United States. In a 1999 national survey, I found that one-fourth of the US public believed that people with AIDS have gotten what they deserve. 30% would feel uncomfortable having their children attend school with another child who has AIDS, and 22% would feel uncomfortable around an office coworker with AIDS. The proportion saying they felt afraid of people with AIDS was one in five.
  • That same 1999 survey revealed that misinformation about HIV transmission actually increased during the 1990s. 41% erroneously believed they could get AIDS from using public toilets. 50% believed they could get AIDS from being coughed on by a person with AIDS. About half believed they could get AIDS by sharing a drinking glass, and one third believed that AIDS can be contracted by donating blood. This sort of misinformation leads all too easily to avoidance and ostracism of people with HIV.
  • More recently, a 2006 Kaiser Family Foundation national survey found that only 63% of Americans knew that HIV can’t be spread through kissing, and only 77% knew it can’t be spread by sharing a drinking glass.
  • The 2006 KFF survey also found that 1 in 5 Americans would be personally uncomfortable having a coworker with HIV/AIDS, and 30% of parents would be uncomfortable if their child had a teacher with HIV. 45% of Americans believe there is “a lot” of prejudice and discrimination against people living with HIV/AIDS, and another 36% believe there is “some.” Only 11% believe that people with HIV/AIDS face “only a little” prejudice or none at all.
  • The KFF poll found that AIDS is still perceived as a gay disease, with Americans more likely to associate it with gay/bisexual men than any other group. My own research has shown that this perception translates into the use of AIDS stigma as a vehicle for expressing prejudice against sexual minorities.
  • Although the CDC wants to make HIV testing completely routine, the consequences of a positive HIV test are quite different from those of other routine tests. As Robert Allen, director of HIV policy for Kaiser’s Permanente Group, observed in a San Francisco Chronicle interview, “No one is ever fired from their job for having high cholesterol. Nobody got divorced from a cholesterol test.”
  • Money to pay for expanded testing and its consequences doesn’t appear to be forthcoming. The same week the CDC issued its new guidelines, the US House of Representatives moved to shift millions of dollars in Ryan White funds away from California, New York, and New Jersey to other states. All of the states need money for AIDS treatment and the logical solution is to increase overall AIDS funding. However, given the huge federal budget deficit, the cost of the war in Iraq, and the President’s zeal for tax cuts, it is difficult to imagine that Congress will allocate more AIDS funding in the coming fiscal year.

Is the CDC’s plan a good one? In principle, it probably is. But it appears to give insufficient attention to the importance of informed consent, pre-test counseling, and the reality that AIDS remains a stigmatized disease.

Copyright © 2006 by Gregory M. Herek. All rights reserved.