The syllogism "ignorance is bliss" invites skepticism. For people trapped in a Greek tragedy, where the fates have ordained the future, ignorance may be bliss. The doomed hero -- think Oedipus or Agamemnon -- doesn't see the future. If he did, he could not avert it. So why force upon him the knowledge of his tragic flaw?
For Americans who are HIV positive, the fates are not in control. Although people with the virus may feel they live under a sword of Damocles, they can ward off that sword -- if they know it hovers. They can take medicines, change risky behaviors, alert their partners to the possibility of contagion -- if they know their HIV status. But if they are oblivious, they won't change their behavior.
An estimated 250,000 Americans who are HIV-positive don't know it. And their ignorance has rendered them impotent to improve their survival odds, or the odds of the people they love.
Recently the federal Centers for Disease Control and Prevention switched strategies. Instead of putting the onus on patients to request (or agree to) a test, the CDC now recommends routine HIV testing for people ages 13 to 64 in physicians' offices. Typically, during a regular physical, a patient gets a slew of blood and urine tests; the HIV test would be added to the list. A patient would have to expressly opt out of this one test.
But in our federal system the CDC can only recommend. States have their labyrinth of HIV regulations, all designed to protect the individual by protecting his right not-to-know. Thirty-one states require "informed consent" expressly for HIV testing. (Other tests, like Pap smears, or blood tests, don't require informed consent.) Twenty-three states require patients to undergo pre-test "counseling," with information on safe-sex, admonitions to practice safe-sex, and discussion of the social possibilities of a positive test. Those possibilities include the risk of deportation for illegal immigrants, the risk that a person will be denied health insurance, the risk of isolation from friends and family, and of course the certainty that life after a positive test will not be the same as life before. (That life change is true for all tests -- ask a woman who has had a positive mammogram, or a man whose colonoscopy showed cancer. Treatment is arduous, with permanent sequelae. Yet few would have opted for an earlier, ignorance-blessed, death.)
For HIV, the mantra has been "voluntary testing." Only two states (Connecticut and New York) mandate testing of newborns for HIV, which indicates the HIV status of the mother. Most states recommend testing only for "high-risk" groups, like drug-users, gay men, and people living in communities with a "high prevalence of HIV."
And while many physicians ask their patients about their sexual partners and their drug use, many patients do not answer truthfully. We have shrouded HIV with stigma. Most people have sex -- all of us are the result of sex; yet patients hesitate to discuss it. And since intravenous drug use is illegal, patients may understandably avoid that discussion. Besides, a one-night stand, or a long-ago drug habit, may not seem germane to patients coming for a routine check-up. They may not see themselves as "high-risk." The need for mandatory pre-test "counseling" is yet another hurdle -- a hurdle that we don't erect for other tests. The requirement not only adds to the time (you have to schedule the counseling), but also adds to the chance that patients will demur.
So the CDC recommendation advances public health. AIDS is a disease, not the mark of Cain. In 2004, 16,000 Americans died of it. Over the past decades, 500,000 Americans have died. HIV status is one warning sign. An estimated 1 million Americans carry the virus. Each year approximately 40,000 people will be infected.
As critics of the CDC recommendation note, this test is not perfect. Some people will test positive erroneously. The test measures antibodies, which take time to develop, so the test will miss some infected people. As for a cure, there is none. The treatments that can extend life will not destroy the virus. Yet the test, and the recommended treatment, are the best we have.
To slow this epidemic, states must rescind their "protective" barriers to testing. We must tell some of the 250,000 people living in blissful ignorance the bad news: they carry the HIV virus. The good news -- for them, for everybody they know, and for the public -- is that they will be able to do something about it.
Joan Retsinas is a sociologist who writes about health care in Providence, R.I. Email retsinas@verizon.net.
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