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: [email protected]
• Web: http://aras.ab.ca
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