(Updated 8 April 2004)

AIDS and Other Health Crises

Lessons from Typhoid Mary

• The Healthy Carrier (fear of the unseen)
• Use of language (“walking germ factory”)
• Identification with the alien
  • minority status
• Blame or sympathy

Lessons from Syphilis

• “innocent” victims (means others are guilty)
• linkage of disease and immorality
  • which is more important to prevent?
  • “positive” value of the threat of infection
• changes in approaches as syphilis goes from untreatable, to treatable, to curable
• Conspiracy of silence
  • quackery and medicine
  • “white lies” and medical confidentiality

Lessons from Bubonic Plague

• Role of the physician
• Role of the western church
  • Charity and selfishness
  • View of death
  • more accepted than now
• Unlinking disease and immorality

Lessons from Tuberculosis

• Contagious or not
• Nobility of the dying person
  • sympathy and blame

Science and Medicine: Can they be trusted? (in the light of conflicting messages)

The dilemma of AIDS education

Two opposing views

• AIDS will kill you (scare us into safety)
  • abstinence, safe sex, or “else”
  • Drug problems, hospital precautions, etc.
• AIDS is not very contagious (prevent hysteria)
  • AIDS victims must be cared for
  • Witch-hunts must be prevented

Two opposing views (Randy Shilts)

• The gay activists
  • don’t stigmatize
  • don’t take away the few freedoms won
• The moral opposition
  • God’s punishment
  • A threat to us all — if AIDS is contagious, is homosexuality and immorality less so?

Two more opposing views

• HIV does not cause AIDS (Duesberg et al.)
  • cause is “accumulated lifestyle”
  • a government plot to kill African Americans
  • a CIA experiment gone wrong
• HIV causes AIDS
  • restrict the virus not the victim
  • separation of disease and sin

Science and the Media

Mainstream reporting

• scientific consensus
  • does every opposing view have equal rights (as in political campaigns)
  • all scientists are human
  • science needs the media to educate
• selling papers
  • miracle cures
  • gore and shock value

Tabloid reporting

• extremes of hope and fear
• supports what the public already believes rather than changing that belief

Scientific ignorance and the Rise of Pseudoscience

• Electromagnetic radiation
• Pyramid power
• Astrology
• Dianetics
• UFO’s and alien abductions
• Vitamin C
• Can you name a dozen others?

Public Attitudes

1996 Survey on Americans and AIDS/HIV (Kaiser Foundation)

• 6% do not believe the public health officials
• 9% do not believe the US Surgeon General
• 11% do not believe the newspapers
• 25% do not believe the “media”
• 34% do not believe the US Government

a 1988 survey

• 25%: HIV passed by coughing and sneezing
• 20%: you get HIV from toilet seat or drinking fountain
• 10%: it’s dangerous to touch an HIV infected person
• 25% refuse to work with an HIV infected or AIDS person
• 25% felt employers should be able to fire HIV(+) or AIDS persons.
  • 1998 update: 21% favored firing or restricting activities of HIV (+) persons

The Power of Fear and Context

1990 survey of 100 African American Churchgoers

• more than one-third believed that AIDS was produced in germ warfare labs for use against blacks
• about a third were unsure
• numbers about the same for educated and less-educated persons

Other contexts for fear

• Fear of homosexuality and homosexuals
• is it contagious?
• Fear of death
• Fear of the unknown
• Fear of the government

Cultural contexts: Objective and subjective truth

Two views of the “virgin bride”

• Virginity is necessary
  • Virginity as a precondition for a valid marriage
    • Definition of “virgin” varies with culture
    • California story
      • Does anal intercourse destroy virginity?
  • Does the “virginity” have meaning for a male?
  • Double standard
• Experience is necessary
  • African custom
    • First sex is unpleasant for both partners
    • Woman’s status is related to that of the man who “prepared” her
    • Noble gift
    • Shift from village headman to truck driver
  • Status of women generally

Magic and Virginity

• Virgins have “magical powers”
  • South African story
  • Sex with a virgin cures AIDS (inter alia)
• Can only be “given” once, therefore rare and measureable

What about men?

• Does “virginity” have meaning?
• Circumcision rituals
  • Reduces F to M transmission about 2-3 fold
  • Many groups have abandoned circumcision for men
• Circumcision for women
• Magic

American Cultures: “Stew Pot” vs. “Melting Pot”

African American Culture

• View of homosexuality
  • “down low” vs. bisexuality or homosexuality
  • View of women
    • Within family
    • Within culture
• View of government and majority culture
• Role of the “Black Church”

Gay Male Culture

• Role of sex in self identification
• Clustering of population
• View of government and religion
• Changing legal status
• Role of family and “obligations”
• Differences between gay men and lesbians

Injection Drug Using Culture

• Financial issues
• View of government and majority culture
• Outcast and isolated
• General health issues
• Prostitution

Bottom lines

• Need to be culturally relevant
• Education must attack from within
• Cultures are complex
  • Assumptions do not translate easily, even “obvious assumptions”
    • Life and Death, virginity, law, doctors, truth, magic, science, technology, etc.

 

The Educators dilemma

How to teach about HIV/AIDS without mentioning

• sex
• drugs
• condoms
• homosexuality
• semen, vagina, syringe, etc.

The Words and the Activities

• What fraction of the general public would know the meaning of the following terms?
  • anal sphincter, vaginal intercourse, intravenous injection, brachioproctal manipulation
• What term would you use to describe those activities?
• Is it legal to use that word in print?
• Would you allow it in a junior high text?

“Black and White” or Grey?

• Life in an era of powerful analytic technologies
  • Carcinogenic compounds and the “Ames Test”
    • more or less dangerous than a quart of water
  • Definition of “NO” risk
• Science, Law, and common usage
  • hype, propaganda, and fear vs. education
  • how much can be cured by education?

What to call a risk

• Is 1 in 300 a high or low risk?
• Is 1 in 400,000 a high or low risk?
• Is 1 in 6,000 a high or low risk?

Health Care and AIDS: Who needs to know?

Infected Doctors

• Doctors are human
• They fear
• They need to make money
• They care about their patients
• They like their privileged status

Should a Doctor’s HIV status be told to his patients?

• Surgeons?
• Family Practice?
• What about nurses?

What is the risk?

• Heart surgery
  • death by surgery is about 2-9%
  • death without surgery much higher
• worth the risk?
  • death by surgery is 2-9%
  • death by HIV infection from infected surgeon estimated at about 1 in 100,000
  • worth the risk?

What does the public think?

• We should know
  • 95% said they should know if a surgeon was infected
  • 94% said all physicians
  • 90% said all health care workers
• Would you accept treatment from an HIV positive physician? surgeon? nurse? aide?

Informed consent

• Is the public able to process the information to make an informed decision?
• Should the public be “protected” from its own ignorance by “experts?”
• Who should be those experts?

Infected patients

Should the Doctor know a patients HIV status?

• Can (s)he refuse treatment on those grounds?
• Describe hospital care with and without AIDS precautions
• “Universal precautions”

1 in 200 needleprick risk

• If 1/200 risk of electrocution from using an light switch, would you demand regulation?
• If you are privileged and well-paid, should you be expected to take more risks or fewer risks?

Privacy Risks

• What happens to people who are known to be HIV(+)?
  • suppose they are only IDU’s
  • suppose they are only gay
  • suppose they are only adulterous
• Suppose they are both?

Remember the HIV dilemma

• AIDS is horribly dangerous!
  • one slip and you could die!
  • we MUST alter behavior NOW or ELSE!
• AIDS is not very dangerous
  • 1/200 or 300 for needlepricks
  • no casual transmission
  • don’t shun all HIV(+) persons

What should we do?