HIV/AIDS: Uncommon

Questions for Midwifery

Practice
Friday, September 17th, 2004, 2:15-3:00pm
at the
ACNM/CAM Second Joint Clinical Symposium
Palliser Hotel, Calgary
prepared and presented by
David Crowe, President
Alberta Reappraising AIDS Society
http://aras.ab.ca
Notes and References:
[The inspiration for the title, and an unusual feminist critique of HIV/AIDS]

Chiarelli D et al. Uncommon Questions: A Feminist Exploration of AIDS. Womens Health Interaction. 1999 Aug.

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?

Detailed Overview:
Motherhood and HIV
Assumptions about HIV, AIDS and Motherhood Recommended Interventions Why? What do the interventions have in common?
Meaning of HIV+
HIV+ in adults Test problems Its worse for kids Implications
HIV Always Fatal?
Consequences of HIV
Interventions: Safe and Effective?
Theoretical benefits Real risks of AZT Say No to nukes? Breastfeeding and HIV
Informed Choice? Coerced Consent?
What are mothers told? What coercion looks like
Real Parents, Real Stories
Valerie Emerson (Maine) The Tysons (Oregon) Sophie Brassard (Qubec) Incarnation Childrens Center (NYC) Other Cases
What You Can Do
Who decides for a child? Counselling Tough choices
For Further Study
Resources Contact Information

Motherhood & HIV

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.

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.
Notes and References:
For the individual woman, the substantial benefits of HIV testing must be weighed against the possible risks. Potential negative consequences of a diagnosis of HIV infection can
include loss of confidentiality, job- or health-care--related discrimination and stigmatization, loss of relationships, domestic violence, and adverse psychological reactions [no
mention of any risks of AIDS drugs]

Revised Recommendations for HIV Screening of Pregnant Women. MMWR. 2001 Nov 9; 50(RR19): 59-86.
The number of induced abortions significantly increased among pregnant women diagnosed with HIV infection, but even before HIV diagnosis the rate of induced abortion was
42%.

van Benthem BHB et al. Pregnancies before and after HIV diagnosis in a European cohort of HIV-infected women AIDS. 2000 Sep 29; 14(14): 2171-8.
In 1994, zidovudine (ZDV) [AZT] was demonstrated to substantially reduce perinatal transmission of the human immunodeficiency virus (HIV). Guidelines regarding the use of
ZDV to reduce transmission and regarding counseling and voluntary testing of pregnant women were issued in 1994 and 1995, respectively. Surveillance methods were used to
evaluate the implementation of these guidelines and to understand reasons for continued perinatal transmission of HIV.

Wortley PM, Lindegren ML, Fleming PL. Successful implementation of perinatal HIV prevention guidelines. MMWR. 2001 May 11; 50(RR06): 15-28.
Brown H. Marvellous microbicides. Intravaginal gels could save millions of lives, but first someone has to prove that they work. Lancet. 2004 Mar 27; 363(9414):
1042-3.
[Cesarean delivery resulted in a 50% reduction in perinatal HIV transmission overall among HIV-infected women who had cesarean deliveries compared with women delivering
vaginally]

The International Perinatal HIV Group. The mode of delivery and the risk of vertical transmission of human immunodeficiency virus type 1. N Engl J Med. 1999;
340: 977-87.
"Interventions: Elective caesarean section before labour, usually at 3638 weeks of gestation, plus a short oral course of zidovudineOf 179 motherinfant pairs 104 received no
antiretroviral prophylaxis or therapy (control group), 48 received the reduced Berlin prophylaxis regimen, 18 received combination therapy and nine received only part of the
prophylaxis regimen. Of the antiretroviral group, 68 were delivered by elective caesarean section. The HIV transmission rate was zero in the antiretroviral group [95% confidence
interval (CI) 0 4.7] and 12.6% (6.419.0) in the control groupNeonatal haematological abnormalities associated with antiretroviral intervention lasted for up to 7 weeks.

Why?

To reduce the percentage of babies who

are HIV-positive.

(continued from previous slide):

"The estimated detection rate of HIV-1 at birth was slightly higher among the 90 children born by cesarean section delivery (40%) than among the 332 children delivered vaginally
(35%), although this difference was not statistically significant [although it is usually stated that vaginal delivery makes infection more likely]...Neither the use of maternal nor
neonatal antiretroviral therapy was associated with the detection rate of HIV-1 at birth [yet antiretroviral therapy is supposed to reduce the likelihood of infection] "

Dunn DT et al. Interventions to prevent vertical transmission of HIV-1: effect on viral detection rate in early infant samples. AIDS. 2000 Jul 7; 14(10): 1421-8.
During the last two years UNICEF/UNAIDS/WHO supported the development and implementation of PMTCT [prevention of mother-to-child transmission] pilot projects in 11
countries 7 of which are situated in the Eastern and Southern African region. Women participating in these projects received counseling on HIV and infant feeding. To date
(September 2000) several countries have developed guidelines on HIV and infant feeding guidelines released by UNICEF/WHO/ UNAIDS in 1998. A few countries have also started
with training of health workers on HIV and infant feeding and with the actual counseling of HIV positive mothers on the risk of HIV transmission through breastfeeding and
possibilities for alternative infant feeding practices.

de Wagt A [ed]. Meeting on HIV and infant feeding: Nairobi, 9-10 October 2000. UNICEF. 2000 Oct 9-10.
[Overview of interventions in the 3rd world, including formula feeding, birth canal cleansing with chlorhexidine, c-section and so forth]

HIV transmission through breastfeeding: a review of available evidence. Unicef-UNAIDS-WHO. 2004.

Guidelines for the use of antiretroviral agents in pediatric HIV infection. HHS. 2004 Jan 20. [use of AZT and other drugs by infants]
[CDC Strategic Plan includes routinized HIV testing of pregnant women, voluntary C-Sections and antiretroviral medications]

Perinatal HIV prevention grantee meeting summary. CDC. 2001 Feb 27-28.
"[from a pamphlet with advice for mothers] What if I have HIV and am pregnant? You can...Take special drugs for HIV drugin your pregnancy which significantly lowers the risk of
your baby getting HIV OR Continue your pregnancy without the drugs OR Choose to end the pregnancy. After your baby is born: The baby will be given special drugs for HIV right
after birth for 6 weeks (if you agree). The baby will be tested for HIV. The baby could get HIV from breast milk. HIV-positive women SHOULD NOT BREASTFEED."

Information on HIV and Pregnancy. Alberta Health. 1998 Aug.

What Do The Interventions

Have in Common?

Assumption that tests are infallible.

Assumption that HIV is quickly fatal.

Assumption that interventions are safe

and effective.

Billion$ in sales of medical drugs and

services.

Meaning of HIV+

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.

Notes and References:

ELISA (or EIA): Enzyme-Linked Immunosorbent Assay. An antibody test with a number of viral proteins mixed together.
Western Blot (or WB): Antibody test with viral proteins separated. Certain combinations are considered positive, negative or indeterminate.
PCR: Polymerase Chain Reaction. A DNA manufacturing technique adapted to testing purposes.
Culture: Sample is mixed with a cancerous cell culture. Stimulating chemicals are added, and non-specific phenomena used to isolate a virus.
Antigen: A protein believed to be from the virus. p24 is the most common HIV antigen used in tests.
A list of quotations from scientific papers on HIV teseting can be found at:

http://aras.ab.ca/test.html
"At present there is no recognized standard for establishing the presence and absence of HIV-1 antibody in human blood. "

Human Immunodeficiency Virus Type 1 HIVAB HIV-1 EIA. Abbott Laboratories. 1997 Jan.
[This paper shows that up to 20% of HIV-negative people test positive with some test kits]
"We selected 20 healthy volunteers, all of whom yield negative results for HIV antibodies using different screening tests. Plasma from all of them were analysed by three different
currently available HIV viral load tests: branched DNA (bDNA) signal amplification assay (Chiron), nucleic acid sequence-based amplification (NASBA) Nuclisens (Organon
Teknika), and Ultradirect reverse transcriptase (RT)-PCR Monitor (Roche)...2 samples [10%] yielded positive results by the bDNA assay...Another 2 specimens [10%] yielded falsepositive results by the NASBA Nuclisens...[and] one of the 20 samples [5%] was interpreted as positive by the Ultradirect RT-PCR Monitor assay...using the Monitor test with nonB primers, up to 4 of the 20 samples [20%] yielded positive values...Results were reproduced in more than half of tested specimens for which plasma volumes were enough for
repeat testing "

de Mendoza C et al. False positives for HIV using commercial viral load quantification assays. AIDS. 1998; 12(15): 2076-7.

Test Problems

Antibodies dont prove that a virus is present,

let alone a specific virus.

Prior pregnancy is a risk for false+ test.

Testing a low risk population: A 99% accurate

test may still result in 90% false positives!

There is no true gold standard.

Purification and characterization of the virus is

necessarybut never achieved!

Notes and References:

Antibodies are proteins that are found in association with a disease. Even if it was proven that the antibodies were generated by HIV (e.g. by injecting pure virus
into an animal or person) it would not eliminate the risk of cross-reactions from other viruses and conditions.
"the EIA [this test] was designed to be extremely sensitive. As a result, non-specific reactions may be seen in samples from some people who, for example, due to prior pregnancy,
blood transfusion, or other exposure, have antibodies to the human cells or media in which the HIV-1 is grown for manufacturer of the EIA. The risk of an asymptomatic person
with a repeatably reactive serum sample developing AIDS or an AIDS-related condition is not known. "

Human Immunodeficiency Virus Type 1 HIVAB HIV-1 EIA. Abbott Laboratories. 1997 Jan.
[It is impossible to prove that HIV has never been purified, but it is unlikely that experiments like this would have been performed and never published. Two failed attempts that
showed that concentrated HIV is at least 90% impurities (and possibly 100%) were published in the March 1997 issue of Virology.]

Gluschankof P, Mondor I, Gelderblom HR, Sattentau QJ. Cell membrane vesicles are a major contaminant of gradient-enriched human immunodeficiency virus
type-1 preparations. Virology. 1997 Mar 31; 230(1): 125-133.
Bess JW, Gorelick RJ, Bosche WJ et al. Microvesicles Are a Source of Contaminating Cellular Proteins Found in Purified HIV-1 Preparations. Virology. 1997 Mar
31; 230(1): 134-44.
Explanation of Positive Predictive Value (PPV), calculated as (# of true positives) (total number of positive tests): If a test is 99% specific (that is, 99% of results in uninfected
people are correct, i.e., negative, and only 1% false positive) and is used in a high risk population (10% actually infected) there will be 100 true positive results and about 9 false
positives per 1000 tests. If only 1 out of 1000 people are actually infected (a low risk population) then there will be 1 true positive result and 10 false positives. In the first case, the
positive predictive value is 92% and in the second is 9%.
"As the number of women being screened has increased, the proportion of false-positive and ambiguous (indeterminate) test results has increased and the positive predictive value
(PPV) of the standard HIV test has decreased "

Doran TI et al. False-Positive and Indeterminate Human Immunodeficiency Virus Test Results in Pregnant Women. Arch Fam Med. 2000 Sep/Oct; 9: 924-9.

Its 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.

Notes and References:

"Of those [children] who will lose antibody [to HIV], an estimated 10.2% lose it after 15 months, and 2.5% after 18 months...Virus has been repeatedly isolated [virus/cell culture]
in an additional small proportion of children (2.5%) who lost maternal antibody and have remained clinically and immunologically normal."

European Collaborative Study. Children born to women with HIV-1 infection: natural history and risk of transmission. Lancet. 1991; 337: 253-60.
"The sensitivity of the polymerase chain reaction [PCR] technique has been estimated at 30-50% during the first week of life, 70-90% at 1-2 months of age and >95% after 3
months of age...However, the techniques used are not standardized, there is no common quality control programme, few results are available from prospective cohort studies in
developing countries and the detection rates in the neonatal period are low "

Dabis F, Msellati P, Newell M et al. Methodology of intervention trials to reduce mother-to-child transmission of HIV-1 with special reference to developing
countries. AIDS. 1995; 9(Suppl A): 67-74.
"Twenty-three (72%) of 32 symptomatic HIV-1-exposed neonates recruited at a mean of 15.2 days were HIV-1-infected. HIV-1 infection was detected in 5 patients who were tested
within 48 h of birth, confirming congenital infection."

Pillay T et al. Severe, rapidly progressive human immunodeficiency virus type 1 disease in newborns with coinfections. Pediatr Infect Dis J. 2001 Apr; 20(4):
404-10.

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.

Notes and References:

HIV Always Fatal?

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).

Notes and References:

[Claims that most HIV-positive children will die by 5 years]
"Since the beginning of the HIV pandemic, four million children under 15 years of age world wide have been infected with HIV and in the year 2001 alone an estimated 800,000
children were newly infected (UNAIDS, 2002). The majority of these children live in sub-Saharan Africa, where most HIV-infected children die before their fifth birthday"

HIV transmission through breastfeeding: a review of available evidence. Unicef-UNAIDS-WHO. 2004.

"The risk of death at 18 months was 176/1000 in the zidovudine arm and 221 for placeboHalf of the HIV-1-infected children died before their first birthday. This gure is among
the highest ever reportedIn univariate analysis, maternal peripartum zidovudine [AZT] had no effect on mortality up to day 230, but a negative effect beyond 8 months of age.
Neonatal anaemia [quite possibly due to the maternal AZT], a diagnosis of HIV-1 infection on or before day 12 and between days 13 and 45, paediatric AIDS, a maternal CD4
lymphocyte count of less than 200/cubic mm, and a high maternal plasma viral load were risk factors for child death."

Dabis F, Elenga N, Meda N et al. 18-month mortality and perinatal exposure to zidovudine in West Africa. AIDS. 2001 Apr 13; 15(6): 761-70.
[But compare this to a study that followed children longer...]
"Survival estimates of the progression to CDC class C disease [AIDS] or death indicate that 6% (2-11%) of infected children in this group would have progressed by the age of 1
year, 17% (10-24%) by the age of 5 years, and 22% (13-31%) by 10 years of age [note that it is normally expected that 50% of HIV-infected people will progress to AIDS in 10
years]...children who had received combination therapy were estimated to have a non-[statistically-]significantly increased rate of clinical progression"

European Collaborative Study. Level and pattern of HIV-1-RNA viral load over age: differences between girls and boys? AIDS. 2002 Jan 4; 16(1): 97-104.
"Risk of progressing to severe immunodeficiency [abnormal CD4 cell counts] was 64% higher [in this group of HIV-positive European children, mostly with mothers involved with
intravenous drugs] when receiving ART [Anti-Retroviral Therapy] [Note that the risk of death was higher in untreated children in the first year and 6th to 10th year, but lower in
the 2nd to 5th year. No information was given on the association between living conditions, fetal exposure to drugs and illness.] "

The European Collaborative Study. Fluctuations in Symptoms in Human Immunodeficiency Virus-Infected Children: The First 10!Years of Life. Pediatrics.
2001 Jul; 108(1): 116-22.
[Long Term Non-Progressors]
"Only 38% of the HLP [Healthy long-term positives, defined as HIV+ for 10-15 years] had ever used zidovudine [AZT] or other nucleoside analogues, compared with 94% of the
progressors. "

Interventions: Safe
and Effective?

(continued from previous slide):

"we estimate that between 21% and 40% [of healthy, HIV+ people not using antiretroviral drugs] will be free from clinical AIDS 12 years from seroconversion and between 10%
and 17%...20 years from seroconversion. "

Muoz A, Savin CA, Phillips AN. The incubation period of AIDS. AIDS. 1997; Vol 11 (suppl A): S69-76.
"patients were categorized into two groups according to their current clinical status and CD4 cell count. 14 patients were categorized as long-term non-progressors (LTNPs), as
defined by absence of symptoms without antiretroviral therapy and stable CD4+ T cell counts >500 cells/ml at a median 15 years of infection[!]. 3 additional LTNPs had
progressed with a decline in their CD4+ T cell count to below 500 cells/ml shortly after their immunological evaluation and were therefore analysed as a separate subgroup. 12
patients were termed slow progressors (SPs), who had been infected for a median of 15 years but who showed evidence of disease progression (declining CD4+ T cell count below
500 cells/ml) [but apparently no illness!] at the time of study, but had not yet started antiviral therapy...There were no other significant demographic differences between LTNPs
and SPs [apart from differences in CD4+ cell counts and 'viral load']"

Papagno L, Appay V, Sutton J et al. Comparison between HIV- and CMV-specific T cell responses in long-term HIV infected donors. Clin Exp Immunol. 2002
Dec; 130(3): 509-17.

Theoretical Benefits

Benefit of AZT use largely based on

reduced risk of children being HIVpositive 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

Notes and References:

[This is the most commonly quoted study, it shows that HIV transmission to infants was 25.5% without AZT and 8.3% with]

Connor EM et al. Reduction of Maternal-Infant Transmission of Human Immunodeficiency Virus Type 1 with Zidovudine Treatment. N Engl J Med. 1994 Nov 3;
331(18): 1173-1180.
[Yet this study shows 29% transmission WITH AZT]
"All women [in this study] received oral zidovudine [AZT] prior to delivery and/or intravenous zidovudine at delivery...Of 42 subjects...24 had a CVL [cervicovaginal lavage]
taken...Of these 24 women, 7 transmitted HIV-1 to their infants and 17 did not...the high rate (29%) of HIV-1 perinatal transmission in this data set does not agree with the largest
prospective, randomized study addressing this question, ACTG 076 [in fact, this rate is higher than the transmission rate in the placebo arm of ACTG 076] "

Panther LA et al. Genital tract human immunodeficiency virus type 1 (HIV-1) shedding and inflammation and HIV-1 env diversity in perinatal HIV-1 transmission. J
Infect Dis. 2000 Feb; 181: 555-63.
[And, this study shows 22.5% risk WITH AZT]
"At 24 months, overall CR [cumulative risk] of MTCT [Mother-to-child transmission of HIV] were 22.5% in the zidovudine [AZT] and 30.2% in the placebo group...Among children
born to women with CD4 cell counts <500/ml at enrollment, CR of MTCT were similar, 39.6% in the zidovudine and 41.3% in the placebo group. Among children born to women
with CD4 cell counts >= 500/ml, CR of MTCT were 9.1% in the zidovudine and 22% in the placebo group "

Leroy V et al. Twenty-four month efficacy of a maternal short-course zidovudine regimen to prevent mother-to-child transmission of HIV-1 in West Africa. AIDS.
2002 Mar 8; 16(4): 631-41.

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.

Notes and References:

"...in adult mice, lifetime AZT administration induces vaginal tumors at a 10-20% incidence...In newborn monkeys and mice, AZT was incorporated into DNA of many fetal
tissues...AZT appears to be a moderately-strong transplacental carcinogen [i.e.!it crosses the placenta and may cause cancer in the fetus] "

Olivero OA, Anderson LM, Diwan BA, et al. AZT is a Genotoxic Transplacental Carcinogen in Animal Models. J Acquir Immune Defic Syndr. 1997 Apr 1; 14(4):
A29.
"Treatment of HIV-infected pregnant women with anti-HIV therapeutics may, therefore, inadvertently expose many uninfected and healthy fetuses to these maternally administered
and potentially toxic drugs. The authors selected six patients who were HIV positive and who had requested termination of pregnancy to study the passage of zidovudine through
the placenta...1 gram of zidovudine [AZT] was given in five doses of 200 mg each orally...At a mean age of 17.5 weeks [into the pregnancy], samples were taken from the mothers
blood, from the amniotic fluid and from the fetal blood...The concentrations of [AZT] in the [amniotic fluid] and in the fetal blood were higher or equaled those found in the
maternal blood...The drug remains contraindicated in pregnancy "

Patterson TA et al. Transplacental pharmacokinetics and fetal distribution of azidothymidine in late-term rhesus macaques after maternal infusion. Drug
Metab Dispos. 1997 Apr; 25(4): 453-9.
"The concentrations of the drug [AZT] in the liquor and in the fetal blood [of 6 aborted human fetuses] were higher or equaled those found in the maternal blood...The drug
remains contraindicated in pregnancy. "

Gillet JY, Bongain A, Abrar D, et al. Preliminary study on the transport of AZT (Retrovir-zidovudine) through the placenta. J Gynecol Obstet Biol Reprod. 1990;
19(2): 177-180.
"Incorporation of ZDV [AZT] into DNA was detected in most of the samples from ZDV-exposed adults and infants. Therefore, the biologic significance of ZDV-DNA damage and
potential subsequent events, such as mutagenicity, should be further investigated in large cohorts of HIV-positive individuals. "

Olivero OA et al. Incorporation of zidovudine into leukocyte DNA from HIV-1-positive adults and pregnant women, and cord blood from infants exposed in
utero. AIDS. 1999 May 28; 13: 919-25.
"In reviewing the frequency of birth defects in this population [of HIV+ women taking AZT during pregnancy] we noted eight birth defects (10%) out of 80 live births [and 8
spontaneous fetal losses, for a total of 17% abnormal pregnancies]"

Kumar RM, Hughes PF, Khurranna A. Zidovudine Use in Pregnancy: A Report on 104 Cases and the Occurrence of Birth Defects. J Acquir Immune Defic

(continued from previous slide):

"The UK's Committee on Safety of Medicines has issued a warning to doctors about the risk of mitochondrial dysfunction in infants born to HIV infected mothers treated with
zidovudine (AZT) to prevent vertical transmission...The warning comes in advance of the publication of data from a French study in which it was discovered that 8 out of
approximately 200 infants developed mitochondrial dysfunction following exposure to zidovudine, with or without 3TC treatment, for the prevention of vertical transmission of
HIV infection. "

Perinatal AZT: New warning on potential risk to infants [URL no longer functional]. www.aidsmap.com. 1999 Jul 21.
"In a multicenter observational cohort study of 325 HIV-infected children born during 1986-1997, clinical progression was compared among infected children exposed or
unexposed to Zdv [AZT] during prenatal and perinatal periods. Zdv exposure was associated with 1.8-fold (95% confidence interval, 1.02-3.11) increased risk of progressing to
AIDS or death after adjusting for year of birth, maternal CD4 cell count, maternal AIDS diagnosis, and subsequent antiretroviral therapy of the child. Mean log10 viral copies at
712 weeks were higher among Zdv-exposed children (P = .004). "

Kuhn L et al. Disease Progression and Early Viral Dynamics in Human Immunodeficiency Virus Infected Children Exposed to Zidovudine J Infect Dis. 2000
Jul; 182(1): 104-11.
"After adjusting for prematurity and maternal clinical characteristics, RPD [rapid disease progression] was three times more likely to occur in infants born to [mothers] treated
[with AZT] compared with findings in untreated mothers (RR=2.8; p = .021). "

de Souza RS, Gomez-Marin O, Scott GB et al. Effect of prenatal zidovudine on disease progression in perinatally HIV-1-infected infants. J Acquir Immune Defic
Syndr. 2000 Jun 1; 24(2): 154-161.
"Children of study women who were prescribed ZDV [AZT] had increased adjusted odds of any anomaly (adjusted odds ratio [OR], 1.55; 95% CI, 1.01-2.29) [i.e. more than oneand-one-half times the risk of a birth anomaly than the HIV+ population being studied in general]...The prevalence of major anomalies in the full cohort based on definition 1 was
significantly higher than that observed in the general New York State population...the SMR [Standardized Morbidity Ratio] adjusted for race, gender, and location suggests that
the risk of a major anomaly in the study cohort was 2.79 times greater than the general population...the lack of data on potential adverse effects of this therapy is still a concern...we
compared anomaly rates of subgroups defined by ZDV exposure history within the cohort of HIV-infected mothers. Babies whose mothers had ZDV exposure during pregnancy had
a greater incidence of major malformations than those whose mothers did not. "

Newschaffer CJ, Cocroft J, Anderson CE et al. Prenatal Zidovudine Use and Congenital Anomalies in a Medicaid Population. J Acquir Immune Defic Syndr.
2000 Jul 1; 24(3): 249-256.

(continued from previous slide):

"[Table 3 shows that congenital abnormalities occurred in 7% of infants when both mother and child had the long course of AZT (long-long), and only 1% when both had the short
course (short-short). Neutropenia and leukopenia occurred in 7% of infants on the long-long course and 2% on short-short. Infections or other HIV-related events occurred in 43%
on long-long and 33% on short-short. Neonatal or other obstetrical events occurred in 22% on long-long and only 14% on short-short. Number of deaths, severe anemia were
similar (although severe anemia occurred significantly less (0%/1%) in the long-short and short-long treatment arms). Mothers who received the long AZT treatment had a higher
rate of stillbirth (8% vs. 4%), severe anemia (7% vs 4%), infection or other HIV events (20% vs 17%), events related to pregnancy or delivery (24% vs 17%) than mothers who
received the short course, although fewer died (3% vs 8%)] "

Lallemant M, et al. A trial of shortened zidovudine regimens to prevent mother-to- child transmission of human immunodeficiency virus type 1. N Engl J Med.
2000 Oct 5; 343(14): 982-91.
"Analyzing simple weight measurements enabled us to determine that maternal illicit drug use during pregnancy, the child's CD4+ T-cell count, history of pneumonia, and
exposure to antiretroviral therapy were significantly associated with failure to thrive(FTT) in HIV-1-infected children. "

Miller TL et al. Maternal and infant factors associated with failure to thrive in children with vertically transmitted Human Immunodeficiency Virus-1 infection: the
prospective, P2C2 Human Immunodeficiency Virus Multicenter study. Pediatrics. 2001 Dec; 108(6): 1287-96.
"[Of 195 mother-infant pairs] 9 children (4.6%) with congenital abnormalities were reported. Compared with the 148 infants not exposed to ART or folate antagonists [including
PCP therapy with cotrimoxazole or pyrimethamine] during the first trimester, first trimester exposure to both therapies (n=13 [23%]) was associated with a 7-fold increased risk
of congenital abnormalities. "

Jungmann EM et al. Is first trimester exposure to the combination of antiretroviral therapy and folate antagonists a risk factor for congenital abnormalities? Sex
Transm Infect. 2001 Dec; 77(6): 441-3.
"Extending the model to include current antiretroviral status suggested that use of combination therapy [rather than no therapy or monotherapy] was associated with high [!]
rates of disease progression (hazard ratios compared with treatment naive: 1.54 for AIDS, 1.14 for death), confirming the presence of treatment indication bias [i.e. sicker people
are treated] [but, hold on, this data is also compatible with the therapy causing AIDS and death!] "

HIV Paediatric Prognostic Markers Collaborative Study Group. Short-term risk of disease progression in HIV-1-infected children receiving no antiretroviral
therapy or zidovudine monotherapy: a meta-analysis. Lancet. 2003 Nov 15; 362(9396).

Say No to Nukes?

AZT designed to subsitute for Thymidine in

growing DNA chains (nucleoside analogue).

Designed as a chemotherapy (cytotoxic) in

the 1960s.

Supposed to interfere with viral reverse

transcription.

Highly toxic to mitochondria.

Notes and References:
"A total of 397 adverse events, 180 biological (ie, involving hematologic or blood chemistry alterations) and 217 clinical in nature, were reported among 238 of the 452 children in
the lamivudine[3TC]- zidovudine[AZT] cohort124 adverse events were reported in 99 [pregnant] women. Most of these events were [judged to be] related to documented
pregnancy-related or postpartum complications [but without a placebo-control group, this cannot be verified]. 38 adverse events were reported related to fetal well-being in 37
pregnancies "

Mandelbrot L et al. Lamivudine-Zidovudine Combination for Prevention of Maternal-Infant Transmission of HIV-1. JAMA. 2001 Apr 25; 285(16): 2083-93.
"Zidovudine was generally well tolerated in this high-risk population...[from Table II: 32%-Anemia grade >=2; 11%-Neutropenia; 13%-Thrombocytopenia; 45%-Received
transfusion; 26%-Received erythropoetin; 11%-HIV infection; 8%-Died]...Slightly more than half of the subjects had anemia severe enough to require a transfusion [giving new
meaning to the term 'well tolerated']"

Capparelli E et al. Pharmacokinetics and tolerance of zidovudine in preterm infants. J Pediatr. 2003 Jan; 142(1): 47-52.
[Nutrition is ignored...]
"low serum vitamin A concentrations were shown [in several papers] to be associated with an increased risk of vertical HIV transmission in prospective cohort studies,
randomized, placebo-controlled trials have reported that vitamin A and other vitamin supplements do not appeare to have an effect on HIV transmission during pregnancy or the
intrapartum period...A higher serum vitamin A concentration was also associated with a lower infant mortality rate among the offspring of this population of HIV-infected
mothers...Use of multivitamin and mineral supplements by low income pregnant women in the United States is associated with a 41% reduction in the risk of low birth weight and a
34$ reduction in the risk of preterm birth...prenatal Vitamin A supplementation of HIV-infected women reduced the risk of preterm birth by 34% in South Africa and the risk of low
birth weight by 30% in Malawi."

Dreyfuss ML et al. Micronutrients and vertical transmission of HIV-1. Am J Clin Nutr. 2002; 75: 959-70.
[Most people dont know what mitochondria are, but you cant live without them...]
"An exhaustive study in a large prospective cohort with predetermined algorithm of the unexplained symptoms compatible with mitochondrial dysfunction. A total of 2644 of 4392
children were exposed to antiretrovirals...All the children with established or possible mitochondriopathy [mitochondrial damage] diagnosed in this study had been exposed to
antiretroviral drugs. One of these children was treated with zidovudine [AZT] only during the prenatal period and receieved no treatment after birth...For the other children, the
treatment was administered in the pre, per- and post-partum periods. It was zidovudine alone in five cases, a combination of zidovudine-lamivudine in 14 cases and another
combination in one. 20 of the mothers received zidovudine by intravenous perfusion during labor. "

Breastfeeding and HIV

Recommendation against breastfeeding by

CDC in 1985 based on anecdotes.

Dunns 1992 estimate of 14% risk of

transmission highly flawed.

Health outcome studies missing!

Breastfeeding still effectively banned in

developed countries.

Exclusive breastfeeding eliminates excess

risk of HIV transmission and risk of formula.

Notes and References:

"Transmission of the virus after birth has been implicated in one case of HTLV-III/LAV [HIV] infection in a child born to a mother reported to have acquired the infection from a
postpartum blood transfusion. Since she breastfed the child for 6 weeks, the authors suggested breastfeeding as the possible mode of transmission (3). Recently, HTLV-III/LAV has
been isolated from the breast milk of infected women (4)HTLV-III/LAV-infected women should be advised against breastfeeding to avoid postnatal transmission to a child who
may not yet be infected."

Current Trends Recommendations for Assisting in the Prevention of Perinatal Transmission of Human T-Lymphotropic Virus Type III/LymphadenopathyAssociated Virus and Acquired Immunodeficiency Syndrome. MMWR. 1985 Dec 6; 34(48): 721-6,731-2.
- Dunn DT, Newell ML, Ades AE, Peckham CS. Risk of Human Immunodeficiency Virus Type 1 transmission through breastfeeding. Lancet. 1992 Sep 5; 340:
585-8.
- Crowe D, Kent G, Morrison P, Tompson M, Greiner T. Revisiting the Risk of HIV Infection from Breastfeeding. Submitted for publication. 2004.
- Mbori-Ngacha D, Nduati R, John G, et al. Morbidity and mortality in breastfed and formula-fed infants of HIV-1 infected women. JAMA. 2001 Nov; 286(19).
- Eastman A, Tompson M, Brussel C, Buchanan P, Crowe D et al. Breastfeeding vs formula-feeding among HIV-infected women in resource-poor areas. JAMA.
2002 Mar 6; 287(9): 1111.
Cumulative probabilities of HIV detection remained similar among never and exclusive breastfeeders up to 6 months

Coutsoudis A et al. Method of feeding and transmission of HIV-1 from mothers to children by 15 months of age AIDS. 2001 Feb 16; 15(3): 379-87.
Where women have practical access to adequately nutritional alternatives to breastfeeding for their children's well-being, they are usually strongly advised against breastfeeding
if they are HIV-positive. Indeed, such a woman who proposes breastfeeding may be subject to intervention by a child welfare agency on the ground that she is endangering her child.
Under some legal systems, healthcare professionals have mandatory duties to report women who endanger their children to such agencies, and in others a voluntary report is not
considered a breach of professional confidentiality.

Cook RJ, Dickens BM. Human rights and HIV-positive women. Int J Gynaecol Obstet. 2002; 77: 55-63.
- Wolf LE, Lo B, Beckerman KP et al. When Parents Reject Interventions to Reduce Postnatal Human Immunodeficiency Virus Transmission. Arch Pediatr
Adolesc Med. 2001; 155: 927-33.
- Judge refuses to let HIV-positive mother breast feed son. AIDS Policy Law. 1999 May 14; 14(9): 13.

Informed Choice?
Coerced Compliance?

What are Mothers Told?

special drugs for HIVsignificantly

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
Notes and References:
[All quotes from...]

Alberta Health pamphlets for pregnant women developed by Alberta Health, Alberta Medical Association, Health Canada, Medical Officers of Health,
obstetricians, HIV specialists and community AIDS organizations and published in 1998 Aug.

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

Notes and References:
Roberts GM et al. Nonadherence With Pediatric Human Immunodeficiency Virus Therapy as Medical Neglect. Pediatrics. 2004 Sep 01; 114(3): e346-353.

Real Parents,
Real Stories

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.

Notes and References:

Clapp DA. Judgment on petition for child protection order. Maine District Court. 1998 Sep 10; NEW-98-PC-17.
"Given that the long-term medical consequences of HAART are unclear, the refusal to implement this therapy despite its possible medical benefit is within the range of appropriate
parental decision making. "

Bourne R. Loving noncompliance: determining medical neglect by parents of HIV-positive children. J Clin Ethics. 2000 Summer; 11(2): 121-5.

The Tysons (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).

Notes and References:

Wolf LE, Lo B, Beckerman KP et al. When Parents Reject Interventions to Reduce Postnatal Human Immunodeficiency Virus Transmission. Arch Pediatr
Adolesc Med. 2001; 155: 927-33.
Hi David,
Felix, born 12/07/1998, is five years old. !Tall and nimble for his age he is working on those small motor skills necessary for writing. We are schooling him after Montessori so
that as his interests expand so then do we strive to make materials available to him.He seems to be of hearty constitution, makes friends easily and is possessed by a soaring
imagination. !He doesn't like vegetables or brushing his teeth. Why anyone gives a shred of credence to the hogwash of HIV remains, for me, a profound mystery.
Highest Regards,
David H Tyson

Tyson D. Personal Correspondence. 2004 Aug 29.

Hi David!
We are all well, including Felix. He is five and a half years old now, and very healthy. He'll be starting
kindergarten in a couple weeks, and is an intelligent, active child. Of course we are very pleased with him! Felix has no sign whatever of any
immune problems or health issues.
It is great you have the opportunity to speak to a group of midwives. They are a crucial group of people to reach with the
information.
Best wishes, Kathleen

Tyson K. Personal Correspondence. 2004 Aug 29.

Felix Tyson, 2004

Sophie Brassard, Qubec

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.

Notes and References:

Ouellet GL. Decision; Sujets: Brassard, Ismal-Henri (n le 92-01-07) et Xavier (n le 95-12-15). Province de Quebec, District de Montreal.

Incarnation Childrens
Center

New York orphanage with children in

numerous clinical trials.

Mostly black and latino children of drugaddicted mothers.

Children who resisted had a tube

surgically placed into their stomach for

direct drug delivery (gastrostomy).

Uncovered by Liam Scheff in late 2003.

Notes and References:
Scheff L. The House that AIDS Built. http://www.altheal.org/toxicity/house.htm. 2004 Jan.
Scheff L. Orphans on Trial. New York Press. 2004 Jul 7-13. http://nypress.com/17/28/news&columns/LiamScheff.cfm

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.
Notes and References:
"Social science studies on patient compliance have consistently supported the depressing conclusion that a great many patients do not comply with their doctors prescriptions and
that their physicians are largely unaware of such practices."

Katz J, Capron AM. The Silent World of Doctor and Patient. John Hopkins University Press. 2002.
"The non-disclosure of toxicity [in this case from a certain type of chemotherapy] is worrying, since it misleads clinicians about the consequences of treatment and results in poor
compliance"

Maguire GP, Tait A, Brooke M et al. Psychiatric morbidity and physical toxicity associated with adjuvant chemotherapy after mastectomy. Br Med J. 1980 Nov 1;
281(6249): 1179-80.
[Presenter will mention recent examples in Western US and Canada]

What Should You

Do?

Notes and References:

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.

Counselling
Mothers deserve to be informed of the:

consequences of a positive test

existence of healthy, HIV+, drug-free people

(LTNP).

lack of validation of tests

toxicity and limited effectiveness of drugs.
absence of health outcome studies for
interventions.

Tough Choices
1. Dont 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
birthquietly and very carefully.

Resources

Christine Maggiores group Alive & Well

(aliveandwell.org) being HIV+ and
healthy without drugs.

Marian Tompsons group AnotherLook

(www.AnotherLook.org) defends
breastfeeding.

Alberta Reappraising AIDS Society

(aras.ab.ca) scientific quotes on tests,

transmission, drugs and more.

Contact Information

David Crowe
Phone: +1-403-289-6609
Email: David.Crowe@aras.ab.ca
Web: http://aras.ab.ca
About the Author:
David Crowe's articles on health topics have been published in Alive magazine, Mothering, RedFlagsWeekly.com and elsewhere. Technical letters by him
alone or with co-authors have been published in the journals AIDS, JAMA, Lancet and Journal of Human Lactation. An extensive analysis of Dunn's 1992
estimate that breastfeeding was responsible for HIV transmission in 14% of HIV-positive women was rejected upon the advice of a scientist with formulaindustry funding and is now under appeal with the British Medical Journal.
David is a member of the technical advisory board of AnotherLook and is President of the Alberta Reappraising AIDS Society. He is a communications
consultant based in Calgary, where he lives with his wife Jean and three children.