The AIDS Exception: Privacy vs. Public Health

The AIDS Exception: Privacyvs. Public Health Chandler Burr

Control of Infectious diseases and Civil Liberties • There is an inherent clash between the state’s concern for protecting the public from infectious diseases and citizens liberties.

Examples • Routine testing (without explicit consent) • Reporting • Contact tracing • Notification • These 4 methods have traditionally been used to control the spread of infectious diseases such as typhoid, diphtheria, tuberculosis, and sexually transmitted diseases.

Surprising Exception • Given this background, it should be surprising if there were an infectious disease of epidemic proportions that would be exempt of these methods of control. • In fact this occurred with the HIV/AIDS epidemic. • The central justification for this exemption was the protection of individual civil liberties.

AIDS Exceptionalism • Aids exceptionalism refers to the abandonment of the traditional methods used in public health for the containment and eradication of infectious diseases.

Why? • When AIDS appeared it was predominately within the homosexual populations. • Not very much was known and the virus was deadly. This caused those that had the virus to be ostracized for society. There was a societal stigma attached to AIDS. • However, researchers needed the cooperation of those with the virus but those infected did not want to come forward because of the negative social consequences. • The condition was absolute anonymity.

Testing • In 1985 the first test that detected HIV was introduced. • Gay rights organizations sued to postpone the testing in fear that widespread screening of gay men would take place. • For instance, school districts where hoping to use the test to suspected gay teachers and if they tested positive they would be fired. • The FDA agreed to use testing only to screen blood at blood banks.

Control • How can the public control a disease if we do not find out who has it? • No routine testing • No identification • Therefore, tracing and notification would be impossible.

Voluntary Testing • Voluntary testing diminishes the possibility of reaching the necessary audience. • People most likely to have HIV are less likely to consent to being tested. People les likely of being infected are more likely to volunteer for testing. • A study showed that those who DO NOT consent are 5.3 times more likely to have HIV. (The test was conducted at a STS public clinic. 82 % agreed to be tested. Later the serum of those who did not agree were taken and all identifying information was erased. After the test was conducted and it showed a 5.3 higher rate of HIV infection)

Argument against Routine Testing • First there is the terrible stigma and discrimination that those who test positive will endure. • Second, routine testing will have the opposite affect of making AIDS even less visible, because people who are scared or who feel they are high risk will not go to hospitals or clinics.

Why is Testing Important? • Even if the disease cannot be cured, as in the case of AIDS in the 1980s and 90s, knowing who has it can reveal how it is evolving within given populations. • This can provide data that will help public health administrators introduce action that will curtail and reduce the transmission of the disease.

Reporting AIDS and not HIV • In all state the reporting of AIDS is mandatory but only in a few state is the reporting of HIV mandatory. • In NY and California, two of the most affected states, reporting of HIV is not mandatory. • This means that if someone is tested and found to have HIV, the doctor or clinic is not required to report the person to the state’s Public Health Department. • Because people can have HIV for 10 or more years before the virus causes AIDS, this person will stay under the radar and will continue to infect others.

Reporting and categorizing • Some states in order to not have to report HIV and AIDS have re-categorized the viruses as non-sexually transmitted disease. • In 1995only 12 states categorized HIV and AIDS as STDs. • 23 states (including NY and California) classified them as a separate category.

Partner Notification • The idea of partner notification is to reduce the risk of spreading the disease. • If someone tests positive, then either the provider (provider referral) or the patient (patient referral) notifies past partners to notify them that they have been in contact with someone with the virus. • In only 4 states is provider referral mandatory.

Partner Notification • While all state have Partner Notification Programs, their effectiveness vary widely. • For instance when providers notify the partners there is a 30-90 success rate. Moreover, since professional public health providers are making contact with possibly affected people counseling and information can be made easily accessible for them. • When patient are responsible for notifying partners there is less than a 10% success rate.

Spouses • Even in cases of married couples, providers have been prohibited by law to notify the spouses of individuals who have dies of AIDS. • Providers have also been prohibited of notifying the spouses of living individuals who have tested positive for HIV and AIDS.

Consequences • What are the consequences of not having routine testing, reporting laws and notification laws for the spread of HIV and AIDS, and the general health of the general health of the public? • How does this affect all of us, even those who are not directly affected?

Justification of AIDS Exceptionalism • (1) The disease is a marker for homosexuality. • (2) Given the stigma attached to the disease, confidentiality would inevitable be compromised. • (3) Given the amount of sex partners of people with the virus, tracing and notification would be ineffectual. • (4) Because there is no cure, reporting it is pointless.

Considering the arguments • Most of these arguments were not good arguments 20 years ago. However, because the facts surrounding HIV and AIDS have changed significantly, today the arguments are not even very relevant. • For instance, HIV and AIDS is not confined to homosexuals. Today there are very effective treatments for controlling HIV.

Ackerman Bill 1995 • The Ackermann Bill would unblind infant HIV tests for those who tested positive. This would allow providers to notify the mothers. • On the one hand, the bill would allow mothers to know about their baby's condition. It would allow them to seek treatment early on. It could be pivotal to the health of the baby and the psychological well being of the mother. There is also something to be said about the right of the mother to know and to decide how to handle the situation.

Ackerman Bill 1995 • On the other hand, the bill would substantially change the nature of the research which was meant to be blind testing. • The bill would convert a blind testing program to a routine, non-voluntary testing program. • When word of this new program gets out, pregnant women will not seek prenatal care in fear of HIV testing. • The involuntary testing and notification will not prevent further infections (does not help the spread of the disease).

Coburn’s Bill The HIV Prevention Act of 1997 • Coburn’s bill attempts to introduce more of the traditional epidemiological methods used in controlling and eradicating other sexually-transmitted diseases to the case of HIV and AIDS. • The AIDS Action Council argues that the Coburn’s bill is over intrusive and will lead to discrimination of gays and those infected with HIV.

Conclusion • Would more involuntary routine screening prevent the spread of HIV? • Would more involuntary screening of pregnant women prevent the spread of HIV? • Would mandatory reporting of those who are infected with HIV prevent the spread of HIV? • Would mandatory provider notification of partners prevent the spread of HIV? The answers is probably yes. • Would knowledge of who has HIV, make those infected susceptible to unfair treatment by insurance companies, employers, tenants, and society at large? The answers is probably yes. • What are we to do?

The AIDS Exception: Privacy vs. Public Health