HIV/AIDS: Uncommon Questions for Midwifery

PracticeFriday, September 17th, 2004, 2:15-3:00pm

at the ACNM/CAM Second Joint Clinical Symposium

Palliser Hotel, Calgaryprepared and presented by

David Crowe, PresidentAlberta Reappraising AIDS Society

http://aras.ab.ca

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Overview

• Motherhood and HIV

• Meaning of “HIV+”

• HIV Always Fatal?

• Interventions: Safe and Effective?

• Informed Choice? Coerced Compliance?

• Real Parents, Real Stories

• What Should You Do?

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Motherhood & HIV

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Assumptions about HIV, AIDS and Motherhood

• HIV can be transmitted during pregnancy, birth and breastfeeding.

• HIV causes the fatal disease AIDS.

• HIV tests are very accurate.

• AIDS drugs have a highly positive effectiveness/safety profile.

• HIV+ mothers are well treated.

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Recommended Interventions

• Universal (or Mandatory) HIV Testing

• Abortion

• AIDS drugs for mother, fetus and baby.

• Vaginal microbicides and birth canal cleansing.

• Cesarean section.

• Formula feeding.

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Why?

• To reduce the percentage of babies who are HIV-positive.

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What Do The Interventions Have in Common?

• Assumption that tests are infallible.

• Assumption that interventions are safe and effective.

• Assumption that HIV is quickly fatal.

• Billion$ in sales of medical drugs and services.

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Meaning of HIV+

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HIV+ in Adults

• Antibody tests are the standard (ELISA, Western Blot).

• Theoretically more accurate tests (culture and antigen) are positive less often and taken less seriously.

• DNA/RNA PCR tests (‘viral load’) are popular but up to 20% of HIV-negative people falsely test positive.

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Test Problems

• Antibodies don’t prove that a virus is present, let alone a specific virus.

• Prior pregnancy is a risk for false+ test.

• Purification and characterization of the virus is necessary…but never achieved!

• Testing a low risk population: A 99% accurate test may still result in 90% false positives!

• There is no true ‘gold standard’.

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It’s Worse for Kids

• HIV antibody tests are not considered accurate in infants until 9-18 months.

• Sero-reversion seen after 18 months.

• PCR used instead, but not approved for diagnosis by the FDA, and risk of false positive is high.

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Implications > > >

The HIV status of the mother is all it takes to increase pressure for:

• AZT (for mother, fetus and child).

• Formula feeding.

• C-Section, and more.

• Compliance is voluntary in theory, but often mandatory in practice.

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HIV Always Fatal?

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Consequences of HIV

• It is often claimed that most children will be dead by age 5.

• There are no studies that show this separately from other risk factors (maternal malnutrition, drug use etc.)

• In adults only half of people have AIDS ten years after becoming HIV positive.

• Some have no consequences from HIV infection (without AIDS drugs). They are known as Long Term Non-Progressors (LTNP).

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Interventions: Safe and Effective?

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Theoretical Benefits

• Benefit of AZT use largely based on reduced risk of children being HIV-positive at 18 months (25% to 8%).

• Breastfeeding is believed to result in about 15% of mothers transmitting.

• Similar results for C-Sections and other interventions…

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Real Risks of AZT

• “AZT is a Genotoxic Transplacental Carcinogen in Animal Models” [title of paper]

• Several papers have shown greater risk of illness or death with maternal AZT.

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Say ‘No’ to Nukes?

• AZT designed to subsitute for Thymidine in growing DNA chains (nucleoside analogue).

• Designed as a chemotherapy (‘cytotoxic’) in the 1960’s.

• Supposed to interfere with viral ‘reverse transcription’.

• Highly toxic to mitochondria.

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Breastfeeding and HIV

• Recommendation against breastfeeding by CDC in 1985 based on anecdotes.

• Dunn’s 1992 estimate of 14% risk of transmission highly flawed.

• Health outcome studies missing!

• Exclusive breastfeeding eliminates excess risk of HIV transmission and risk of formula.

• Breastfeeding still effectively banned in developed countries.

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Informed Choice?Coerced Compliance?

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What are Mothers Told?

• “special drugs for HIV…significantly lowers the risk of your baby getting HIV”

• “The baby will be given special drugs for HIV…(if you agree).”

• “The baby will be tested for HIV”

• “Do not breast feed”

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What Coercion Looks Like• Accusations of non-compliance based

on lab tests.

• Home Nurse visits to encourage compliance.

• Directly Observed Therapy (DOT) in hospital.

• Gastrostomy tube (drug direct to stomach)

• Child in Foster Care

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Real Parents, Real Stories

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Valerie Emerson (Maine)

• Valerie is HIV+ and had two HIV+ children. All 3 took AZT.

• Judge ruled “She has placed her faith in this medical approach in the past and has lost a child [daughter Tia]”

• She was allowed to keep her son off AZT, partly because he recovered health after stopping it.

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The Tyson’s (Oregon)

• Mother HIV+, father HIV-. Son untested.

• Court ruled that AZT for Felix was mandatory and banned breastfeeding.

• Parents kept Felix but were monitored.

• Felix is now a healthy 5 year old (not taking drugs).

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Felix Tyson, 2004

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Sophie Brassard, Québec• One son diagnosed with ‘AIDS’ due to a

respiratory infection.

• Court mandated AIDS drugs for both her sons.

• No family support.

• Kidnapped her own children to avoid medication.

• After Sophie died, children returned to AIDS drugs.

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Incarnation Children’s Center

• New York orphanage with children in numerous clinical trials.

• Mostly black and latino children of drug-addicted mothers.

• Children who resisted had a tube surgically placed into their stomach for direct drug delivery (gastrostomy).

• Uncovered by Liam Scheff in late 2003.

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Other Cases

• Coercion is implicit, verbal, hidden.

• Parents rarely fight back.

• Parents live in fear.

• Children have no rights.

• Non-compliance is kept secret.

• Doctors cannot tell if drugs work or not.

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What Should You Do?

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Who Decides for a Child?

• Doctors claim absolute certainty about the efficacy and safety of treatments.

• Parents see the drugs causing debilitating side-effects in their children.

• Children, even teenagers, have no say.

• Not supporting parents should require a great deal of knowledge and certainty about outcomes.

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Counselling

Mothers deserve to be informed of the:

• consequences of a positive test

• lack of validation of tests

• toxicity and limited effectiveness of drugs.

• absence of health outcome studies for interventions.

• existence of healthy, HIV+, drug-free people (LTNP).

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Tough Choices

1. Don’t get involved.2. Do it by the book (drugs, formula etc.).3. Provide a spectrum of information.4. Work for parents who want a natural

birth…quietly and very carefully.

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Resources

• Christine Maggiore’s group Alive & Well (aliveandwell.org) – being HIV+ and healthy without drugs.

• Marian Tompson’s group AnotherLook (www.AnotherLook.org) – defends breastfeeding.

• Alberta Reappraising AIDS Society (aras.ab.ca) – scientific quotes on tests, transmission, drugs and more.

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Contact Information

• David Crowe

• Phone: +1-403-289-6609

• Email: David.Crowe@aras.ab.ca

• Web: http://aras.ab.ca

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