Mothers, HIV tests, consent and choices

Dr Aust and the family Aust live in a decent sized city in the North of England. As cities tend to, this one has a good share of urban poverty.

A few years back we were discussing how to incorporate a ”learning outcome” (yuck) into Dr Aust’s bit of the University’s medical degree that would point the med students to think a bit about diseases associated with poverty in the UK. As part of this, Dr Aust asked all his clinician mates what medical conditions they would think of as being most strongly associated with poverty.

The two answers, pretty much universally, were “Anything caused by smoking” and “Anything caused by substance abuse, and particularly by intravenous drug use”.

Mrs Dr Aust at the sharp end

Mrs Dr Aust spent several of her years in general medicine (Internal Medicine to US readers) at our big local University hospital that serves some of the more deprived bits of the city. So she became well-acquainted with the full spectrum of disease associated with intravenous (IV) drug (ab)use.

Over these years, one thing she used to have to do reasonably regularly was to try and persuade pregnant women who had histories of IV drug use to get tested for HIV. This would usually happen when these women had turned up on the medical wards having been admitted to the hospital for some other health problem associated with their drug-taking.

Now, you cannot compel a pregnant woman to have an HIV test1. But you would very much like to know whether the mother-to-be is HIV positive, both so that she can get appropriate antiviral treatment for herself, and also to reduce the risk of her transmitting the virus to her child.

But I repeat – you cannot compel the mother to get tested. Indeed, this is one of those potted scenarios we might use for getting the medical students to explore the ethical issues relating to ”patient autonomy”. It would clearly be in the best interests of the unborn child – or foetus, if you prefer – for the mother’s HIV status to be determined. But it is the mother that is the patient – not the foetus she is carrying. And there may be reasons why someone who is at a high risk of becoming HIV positive does NOT want to know if they actually are. Who wants to be given the news that they have a potentially fatal disease? Not everybody does. Some would rather not know.

Obviously this is a potentially difficult scenario for doctor and patient. The doctor wants the patient to get tested, as medically speaking it would be in the patient’s best interests. The patient refuses. And the decision is potentially damaging, not just to the patient, but also to the foetus the patient is carrying.

However: Mrs Dr Aust says that in several years of dealing with such cases, she never had a case where, once the facts were explained to her, the mother-to-be did not decide to get tested for HIV.

The reason?  The much improved chance that the baby will be born HIV-free if a mother who is HIV positive gets the appropriate medical treatment, notably with anti-retroviral drugs. Whatever the pregnant woman’s feelings about how much she did, or didn’t, want to know her own HIV status, it was the implications for the baby that were the clincher, every time.

So what prompted me to remember this story today?

One reason is that I have been writing recently about HIV, and the disastrous effects in South Africa of the Mbeki government’s AIDS denialism – including with respect to mother-to-child transmission of HIV.

A second reason is that back in July Mrs Dr Aust and I became the parents of Baby Aust, our second child. Mrs Dr Aust opted for the routine HIV test (again). Baby Aust did not, as it happens, have the easiest time in the womb. All turned out well in the end, but suffice to say it was not the most stress-free pregnancy one could imagine. So our feeling on being presented with a healthy baby boy was one of overwhelming relief, as well as happiness.

But the third reason for writing this, and the decisive one, is that just today the news has hit the networks and the Blogosphere that prominent HIV positive mother and “Rethinking AIDS” activist Christine Maggiore has died of pneumonia, aged 52, in Los Angeles.

Read Maggiore’s story, and see what you think.

(Orac also has a post here)

[BPSDB]

  1. For those interested in current UK health policy on HIV testing in ante-natal clinics there is a leaflet (PDF), now fairly old, here. Many antenatal clinics (and certainly our local ones) offer pregnant women HIV testing as a routine prenatal screening test (i.e. offered to everyone as a matter of course), along with Hepatitis B and C and syphilis. Women can still refuse the HIV test, but the hope is that relatively few do. This kind of approach was designed specifically to reduce the numbers of pregnant women with HIV whose HIV status is not known before delivery.

7 Responses to “Mothers, HIV tests, consent and choices”

  1. Seth Kalichman Says:

    The death of Christine Maggiore is tragic just as her life was tragic.

    She was mislead by Peter Duesberg and David Rasnick and other AIDS Denialists. Ultimately she promoted their pseudoscience at her own peril. Many others were harmed by her relentless promoting of false information that confused people about HIV testing and treatment.

    We should respect the decision of an informed person to refuse treatment for any serious medical condition. But the problem with AIDS denialism is that people are making testing and treatment decisions based on misinformation and disinformation spread by AIDS pseudoscientists and conspiracy theorists.

    The sad story of AIDS denialism that enmeshed Christine Maggiore is told in my book Denying AIDS: Conspiracy Theories, Pseudoscience, and Human Tragedy (all Royalties donated to buy HIV medications in Africa). For more information visit http://denyingaids.blogspot.com/

  2. Maxine Says:

    The story is a very sad one. I read the LA Times piece you link to. I feel desperately sorry for the children.
    This type of “I know best despite the evidence” attitude towards other people, i.e. children, is what is so upsetting about the anti-vaccine people – more so than their awful displayed hatred towards people who do not agree with them. Why are so many people incapable of looking at clear evidence and drawing the obvious conclusion? (Rhetorical question.)

  3. apgaylard Says:

    Thanks for another thoughtful and reflective piece. I look forward to more next year!

  4. draust Says:

    Agree 100%, Maxine. People have, of course, the right to make decisions for themselves, including incredibly foolish ones. But the decisions have impacts beyond them, especially and most tragically on their kids.

    There is another incredibly depressing example of just how appallingly far this can go, specifically in the anti-vaccine / autism context you mentioned, here. And the JABS website, particularly on its Forums, is practically a temple to this kind of thing, though not usually this bad.

    It is utterly tragic when parents’ love for their children morphs into the sort of twisted form detailed in Orac’s post. And the “therapists” who push this stuff, or even just “enable” it, are in my view beneath contempt. This kind of thing, of course, is a major reason why Andrew “MMR” Wakefield is regarded with such withering scorn by all my medical friends.

    Meanwhile, a predictable development in the Maggiore case – the HIV denialist crew are naturally convinced she (and her daughter) couldn’t possibly have died of AIDS. You really couldn’t make this stuff up.

    * sigh *

  5. dt Says:

    To admit HIV existed and that she was ill and in need of treatment would have been an admission by her that she was wrong about what killed her daughter (and would mean she was indeed directly and solely responsible for her daughter’s death).
    I guess she just psychologically could not handle that possibility, and what we see is a case of cognitive disonance resulting in the ultimate form of denial. So bad in fact that she died from it rather than let herself face the alternative. She could have chosen life, and lived, but then would have been unable to live with herself. Very strange one, really.

  6. John H Says:

    The poor child her stupidity killed is not the only victim of this drivel.

    There are plenty more: mttp://whatstheharm.net/hivaidsdenial.html

    And probably many thousands more undocumented.

  7. draust Says:

    Yes, I agree, dt, my thinking is along the same lines. A commenter called “Snout” over at Respectful Insolence encapsulated pretty much what I think about it. When I agreed with him, I got a flaming from a major league nutter called Michael Geiger, who seems to be a “cure AIDS with vitamins” type and have plenty of form in the HIV denialism area, e.g. on this blog over at Nature.

    I must say that reading on Orac’s threads and elsewhere the HIV-doesn’t-cause-AIDS lots are quite the most rabid Alt.Reality people I have ever seen, surpassing even the JABS antivaccine crowd.

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