Getting tested for HIV is being made to seem like part of the medical routine for expectant mothers. But, in fact, volunteering for an HIV test is playing Russian Roulette, where the outcome can be harassment, drug-induced illness or even death. Certainly, the HIV testing gun has many chambers and few bullets, but everyone should think about what will happen if the gun goes off and they test positive. What would they do next? More importantly for mothers -- what would doctors, social workers and lawyers try to make them do? Based on a number of recent cases, the answers are simply terrifying.
It couldn't happen to a nice woman like me...
A Mormon woman in Toronto tests positive for HIV. She is stunned. An observant, morally conservative and religious woman, she had never even had sex before her recent marriage, let alone with a man other than her husband. Trusting her husband, and distrusting the test, she got retested and tested negative this time. She was one of the lucky ones.
But, the tests are accurate ... aren't they?
HIV tests are claimed to have extremely high accuracy, in the order of 99.9%, or even higher. However, even a test that is 99.9% specific will result in 1 false positive out of 1,000 tests. What would happen if a test like this was used on 100,000 women, of which only one was actually HIV positive? There would be 100 false positives and only 1 true positive. Consequently, the more saintly a woman is, the greater the risk of a false positive test compared to the risk of a true positive. Yet, there is no way to tell the difference, so unless you insist on multiple repeat tests, you will be treated as a true positive.
All tests are problematical when used in low-risk populations, but HIV tests have an even bigger problem -- they are all indirect tests, none having been validated against actual isolation of the virus, because this 'gold standard' has never been accomplished, not even once.
Routine HIV tests are based on antibodies. These tests, known as ELISA and Western Blot detect the presence of proteins (antibodies) that are believed to be unique to HIV. These antibodies were identified as HIV in Robert Gallo's initial papers and patent applications merely because they were not commonly found in healthy people. Furthermore, antibodies do not necessarily indicate an active infection, they only indicate that someone has been exposed to a pathogen some time in the past. Why, with HIV has the presence of antibodies been taken to mean a fatal infection, and not the mounting of a successful immune defence?
There is recent research (unfunded, for obvious reasons) that indicates that HIV antibodies may be present in all of us! The ELISA test requires that serum be diluted 400 times, vastly more than in other antibody tests. When a small number of HIV-negative samples were run without dilution, all tested positive. This could mean that "HIV" antibodies are produced in large quantities response to AIDS-defining diseases or other immune system challenges and are actually an effect of disease, and not a cause.
But, the new drugs can at least save my baby...
It is often claimed that two anti-HIV drugs (AZT and Nevirapine) can reduce the risk of an HIV positive woman infecting her baby. But, how is it known that a baby is HIV positive when they inherit antibodies from their mother? Scientists generally consider antibodies 18 months after birth to be a sign of an active infection, but there is no guarantee that this is a truly reliable yardstick, and besides the children will be exposed to anti-HIV medications throughout this time. Newer genetic tests, known as viral load, are often promoted as being more accurate in babies because they can actually detect the genetic material of the virus. However, this is not true for a number of reasons. First of all, viral load tests only look for a tiny fraction (about 3%) of the purported HIV genome, not the entire structure, so cross-reactions with other retroviruses are quite likely. Secondly, the viral load test is based on the Polymerase Chain Reaction (PCR), which can never be taken as accurate (because the end result of a chain reaction cannot be used to accurately estimate the starting position) and is very prone to contamination. Only one molecule of DNA or RNA from another sample in the sample lab is required to cause a false positive reaction! Kary Mullis, the man who won a Nobel prize for inventing PCR, strongly criticizes its application in the viral load test and believes that it has no validity. Even the makers of the tests caution against their use to diagnose HIV infection.
Even the claim that these drugs reduce transmission, however that is measured, are suspect. One trial showed that HIV transmission in a placebo was 25%, but only 8% with AZT. Another trial compared AZT and Nevirapine, and showed that transmission with AZT was 25%. Will the real transmission rate please identify itself?
Furthermore, there are no studies that show that children of HIV positive mothers who are classified as HIV positive fare worse than those who are HIV negative. It is just assume that this must be the case because HIV is a mad, terrifying, universally fatal virus.
Can the drugs hurt me?
If a pregnant woman takes AZT she risks not only hurting herself, but also her baby. The effects of Nevirapine are not so well known, as it has never been tested in a placebo-controlled trial, and it is used in shorter courses.
AZT is simply one of the most toxic drugs in the world. It was originally developed as a cytotoxic anticancer drug but dropped because it was too toxic. It is well known for its severe detrimental impact on the blood production system and, in particular, bone marrow. The anemia produced by AZT is so severe that blood transfusions may be required, and sometimes patients become transfusion dependent. AZT is also strongly associated with muscle wasting, vomiting, hepatitis, Non-Hodgkin's Lymphoma (a form of cancer) and heart problems. If you have ever seen pictures of end-stage AIDS patients lying in a hospital bed with arms as thin as a concentration camp survivor -- you may have been looking at the ravages of AZT, not HIV.
Many mothers would take the risk that AZT would hurt them, as long as it helped their baby. However, AZT is known to cross the placenta, and is carcinogenic, mutagenic and can cause birth defects. An Italian study compared the children of mothers who took AZT against those who refused it and concluded that “Comparison of HIV-1-infected children whose mothers were treated with [AZT] with children whose mothers were not treated showed that the former group had a higher probability of developing severe disease [57.3% versus 37.2%] or severe immune suppression [53.9% versus 37.5%] and a lower survival [72.2% versus 81.0%].” Yet, the authors of this paper, like so many others who have found similar problems with HIV drugs ended their paper by exhorting women to stay on their medication.
Should I get tested?
You should only get tested for HIV if you are planning to go on anti-HIV therapy if you test positive. Otherwise, there is no point in believing that you have a time-bomb ticking within in you for the potentially many years (average: 10) before any illness occurs, and there is no point in exposing yourself to the risk that social workers or doctors may believe that you are endangering your baby if you do not accept drug therapy.
But, HIV is fatal, isn't it?
It is often stated or implied that HIV always leads to AIDS and death, even though it is known that this is not true. There is even a special name for people who are HIV positive but have never suffered any illness even after many years – Long Term Non-Progressor or LTNP. Michele Rolfe of Monterey, California is one of these. More than a decade ago she watched her husband go on anti-HIV therapy and die, but for some reason she resisted the therapy and is still thriving, luckily having met and married a man who also accepts that HIV+ is a meaningless label. Even after all these years, every doctor she sees encourages her to start the drugs before it is too late.
What if I do test positive but don't want drugs?
Many women have been tested for HIV without their knowledge, or have simply not thought of any reason why not to get tested. It is an enormous shock when they get back a positive test result. They may decide that they do not want to take drugs or give them to their baby, but doctors and social workers may attempt to force them to take them during pregnancy, and given them to their baby afterwards.
Valerie Emerson of Maine put herself, her son, and her daughter on AZT when they were both found to be HIV+. She took herself off because she could not stand the side effects, but, at her doctor's advice, persisted with her children even through the obviously agonizing pain that they were suffering. After her daughter died (of "AIDS-related" pneumonia) she decided to take her son off. Although his symptoms immediately started to resolve, and he finally started to grow and thrive, the State of Maine accused her of being neglectful, and took her to court. Against great odds, she won her case.
David and Kathleen Tyson in Oregon were not so lucky. They were forced to medicate their infant with AZT under supervision and Kathleen was banned from breastfeeding, even though both claimed to have been monogamous for over 10 years and David tested negative.
Sophie Brassard of Montreal fared even worse. She did not even retain physical custody of her children and, with her parents, siblings, doctors, social workers and the legal system lined up against her, she knew that she did not stand a chance. Even though the International Committee for Medical Justice spent tens of thousands of dollars defending her, she lost. After months of watching her parents feed drugs she believed to be toxic and unnecessary to her children, forcing them to take another dose if they vomited, she could not stand it any more and, at the first opportunity grabbed her children and fled.
What can I do?
Every woman should have a plan for when they test HIV positive – especially if they do not want the medicine that they will asked, cajoled or forced to give to their children. Even though the likelihood of testing HIV positive is slim, the consequences could destroy your life.
Consider where you could run to. Do you have a close friend or relative in another jurisdiction? If you test positive and start getting a lot of pressure to take drugs, be prepared to run at a moment's notice. Use whatever delaying tactics you can think of, knowing that doctors and social workers cannot move quickly, but need to follow a process of escalation.
Jane Doe of British Columbia (not her real name) used this approach. Once social workers started to threaten that if she breastfed her infant or refused to give him AZT they would take custody from her, she fled across the border to Alberta, where she is now living with her husband and two healthy children in semi-anonymity.
An approach used by many women is to pretend to take the medication, but actually flush it down the toilet. They can expect to get much praise from their doctors when their babies flourish, although that would change to anger if they were ever found out. The problem with this approach is that if the mother or her child ever require hospitalization for any condition the HIV therapy will be ‘continued’ as a priority, and they may find themselves trapped in their own lie.
One of the best methods of preparing yourself is to read the book written by HIV positive mother Christine Maggiore “What if Everything You Thought You Knew About AIDS was Wrong?” Copies can be obtained from the Alberta Reappraising AIDS Society for CDN$10 (or whatever you can afford) or directly from Alive & Well in Los Angeles (www.aliveandwell.org, phone: +1-818-780-7093). Apart from providing an excellent summary of alternate views on HIV and AIDS, this book also contains an extensive list of other books, ways to contact support organizations as well as other resources.
The most important thing you can do to protect yourself is to be aware of these issues before you become pregnant and obediently submit yourself to the routine tests performed by most doctors and hospitals. If you feel well and have no symptoms of illness, does it make sense to take medication just because a test says you are sick or HIV-positive? You decide. The choice is yours.