Pregnancy Blood Tests - Did you have an HIV test?

[Motherofone]

I'm c. 7 weeks pregnant, and because I'm currently recovering from pneumonia my Dr suggested I have my 'booking in' blood test early to also check whether my infection is bacterial/viral. However when I turned up at the surgery today for my blood test, the Practice Nurse got all flustered and said had I been counselled for and agreed to the HIV screen, as my Dr had included it as one of the things to test the blood for on the form for the lab.
I was quite shocked, as it had not been discussed with me, and the Nurse went on to say that it was not usually their policy to include requests for HIV blood testing, as any results would then be included in my medical record at the surgery, and would HAVE to be disclosed if requested e.g. by a health insurer or employer etc. She recommended that if I wanted to be tested for HIV that I go to a separate clinic at the hospital where the result would then remain confidential to me.
Apparently some insurers/ financial institutions will ask on application forms if you've ever had an HIV test, but do not ask the context (e.g. for safe pregnancy reasons).
In the event, she couldn't get any of my veins 'up' enough to take the blood sample, so I have to go back again next week (urgh!), so I have a little time to think about things. I am not in a high risk category for HIV by any means, and am therefore 99.9% sure the result would be negative, but I'm more worried about any future impact of having to reveal that I've been screened for HIV.
Does anyone have any personal experience/views?

Although I don't share her reasons for not having a test, I think Tinker gets close to the real issue here. If we all were 100% certain we didn't have HIV then there would be no point/risk in having or not having the test. The fact is there's always just that niggly little 0.1% fear that it might be positive. But if that's the case (and after all, the possibilty of a (rare) positive test is why testing takes place) then we individually need to have thought through all the 'what if it was positive?' scenarios. Different people react to bad news about their health in different ways - some are 'fighters' who are determined to conquer whatever 'it' is and others are spiralling downwards 'defeatists' who give up.
Aren't some people carriers for HIV without ever exhibiting symptons? If I was one of those people I think I might prefer not to know... If you were confirmed positive EVERYTHING would be turned upside down in your life:

• your thoughts about your future
• your possible feelings about relationships with your partner/kids
• your financial situation (there is still a LOT of prejudice out there)

My feeling is that for these reasons the HIV test is COMPLETELY different from all the other screens (e.g. syphillis)because it's the only one which might profoundly change your life if it were positive.

All that said, I had my pregnancy bloods done yesterday and I opted 'in' for the HIV screen after all!
I guess having had a week of Mumsnet discussions on the subject helped me see all sides of the issue - so thanks everyone.....

Motherofone, if I were to be found to be HIV positive then yes all of those issues would be concerns for me too. However, my number one priority would be protecting my unborn child from the disease - everything else would be a distant second. Hence why I can't understand the reaction here.

Croppy - I guess that by just having elected to have the screen I also decided that the most important issue was protecting my unborn child, so I'm don't actually disagree with you. I just think the thought process and implications are different, and that it's wrong that the test is just lumped in with all the others - especially if, as someone else commented, pre-counselling (or even discussion!) is not longer a requirement.

I can see where you are coming from Croppy, and I think, at the end of the day, that you are right. But it is scary having an HIV test that isn't just a routine anonymous one, even if you are 99.9% sure that you will test negative. If I had one, my life would simply go on hold till I had the results.

But, as you say, your child's life matters above all else. Would it make any difference if an HIV test was performed on all babies shortly after birth along with the other routine checks? is this medically possible and preferable in any way? I really don't know....

I've been reading this thread with interest. I opted to have the HIV test when I had all the other bloods taken for this pregnancy. I was taken slightly by surprise when I was offered the test. However, my own view was that I have been aware of the risk of HIV since 1985/6, before I was sexually active. I have not lead an entirely "pure" life and although I would be in a low risk category, there is a chance that I could have had it. Personally, I would rather know and get on with dealing with it, than pretend that by not having the test, the possibility was not really there.
I didn't sweat buckets in the interim month before the results came back, what would be the point. However, I was pleasantly relieved yesterday when I found out that I the result was negative.
I am glad that the HIV test is now offered as routine. If it makes people aware that they may be carrying this disease, then hopefully it may reduce the risk of them giving it to other people & it will hopefully mean that they and their baby could be treated before birth.

Tigermoth, I think the problem with your suggestion is that immediately after birth many more babies test HIV positive than go on to be so in infancy, because their mothers' antibodies are still present in their blood. Plus, if the mother is ignorant of her positive status and chooses to breastfeed, this could transmit the virus to an uninfected baby at any time subsequent to testing clear at birth.
Despite many neurotic qualms (I think I'm what might be termed an ultra-low risk), I had my test done in my first pregnancy, after a helpful chat with the midwife about the implications for a positive test. I would not describe this chat as being equivalent to proper HIV counselling, but it was better than nothing.
My view was that IF I was positive, it was going to have an appalling effect on my life, such as Motherofone describes, but at least steps could be taken to reduce the risk of it shortening my unborn child's life too. None of which negates the valid points people have made here about not been treated with courtesy by some health practitioners.

Just out of curiousity, why isn't anyone upset that insurance companies ask you if you've ever had the test? It doesn't seem to be a valid question, especially as all blood donors are screened for it, so their answer would have to be "yes". I can see the point of asking for insurance purposes if someone has HIV, as it would be a preexisting condition.

If insurance companies and banks (they ask for a MORTGAGE?) care about having the test done, then I can certainly see why some people choose not to have it. If getting tested counts against people who are applying for insurance or a mortgage, that definitely affects a large part of their lives. But I think that people have the right to know with 100% certainty (or whatever confidence level the test has) without being penalized for a negative result.

Sorry if I'm misunderstanding the insurance/ bank thing.

Lil, you say 'I think I would get very frustrated at people who opted out of the test'. Whilst I understand that the HIV test has implications for the safety of the unborn child, what do you think of the AFP tests? I refused the AFP tests on the grounds that I would not be prepared to take any action based on the results of the test, but encountered the same frustration on behalf of the medical profession that you sympathise with. I am an intelligent, informed person and do not believe that anyone has the right to make those sort of decisions for me. If you believe that the medical profession has the right to give people the tests against their will, because it is in the 'best interests of the child' where do you draw the line - remove children of smokers from their houses because they are increasing their childrens risk of growing up with potentially life threatening illnesses?

Perhaps I wasn't very clear before but my understanding is that you won't be asked if you have been tested for HIV for insurance purposes - they ask if you ARE positive for HIV (or Hep B, C or other STI). Therefore, if you have had a negative test it is irrelevant. The insurance companies are only interested in picking up on increased risk of any illness; that's why they ask about past history and family history and stuff like smoking and drinking.

Testing for HIV after birth is not really an option as it would be too late in terms of preventing transmission to the baby. This involves keeping the mother well during pregnancy and, in particular, keeping the level of HIV in the blood as low as possible. The riskiest time for transmission is during birth and so drugs are given to the mother during delivery and to the baby immediately afterwards; in addition, most women in this country have an elective c section as this has been shown to reduce rates of transmission. In any case, if the baby is HIV positive then the mother must be too so why wait until then to find out?

I have to say,in defence of the medical profession, it really isn't a case of forcing people to do things they don't want to. The test is offered simply because there is so much that can be done to treat both mother and child if it were to be positive. It only makes a difference to you if you are positive, not to the person who tests you for it. There's lots to criticise about the profession I know but none of this would be offered if it wasn't potentially beneficial. Oh, and btw, there aren't really "HIV carriers" - it is assumed that everyone gets sick eventually. There are a handful of cases of peolple world-wide who have been infected for a long time but are still well but they are incredibly rare. You would still be at risk of transmitting to your baby or partner anyway.

Just to clarify, I HAD an HIV test when I was pregnant - but it was anonymous, hence my earlier message about what happens if it is positive. If I was pregnant NOW and was offered an HIV test and told that I would be informed of the results I would, with a lot of trepidation, take it. As I said, intellectually, I am fully aware of all the arguments for knowing.

However, giving blood is slightly different. In effect, you are volunteering to have an HIV test. I don't know many people who have volunteered to have an HIV test just to find out the result. I think most people just cross their fingers and hope they never have to think about it.

I agree with motherofone that an HIV test is entirely different from a test for syphilis because the repercussions of a positive result are far more serious.

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Thanks. Smew, sorry for not reading your previous post more closely (or, reading it and then, in the space of a day, forgetting what it said!). I saw red at the thought of being asked if you were tested for a mortgage. Outrageous!

I agree with all you said-- wouldn't opt out and would opt in, whatever the case might be. I was tested for my pregnancy last year and didn't even think about it. There's always the chance I could have it. My husband would have to have been unfaithful since the last time he donated and I don't think that's happened, but better to be safe, especially for the baby.

Berries, I don't think it's like the AFP test. I opted out of my 12 week scan which, for me, was almost solely to determine if the baby seemed to have Down's. Since I wouldn't have taken any further action, I didn't have the test. If I had had HIV, there's a bunch I could have done to make sure the baby had a chance to be healthy and HIV free.

Just to add, my husband was very amused by my post. I don't think he's had any affairs, especially since the last time he donated blood, but wanted to point out that I'm low risk for contracting HIV.

This thread really makes interesting reading since it proves that the ignorance surrounding HIV is still rife. Yes I have been tested twice, due to pregnancy and I think it should be routine to test anyone who has any kind of invasive operation in hospital as well. You are potentially putting others at risk. If routine HIV testing were done it would help to control the desease. There are hundreds, possible thousands of people with their heads in the sand, unknowingly infecting others all over the place. HIV is a terrible disease and yes with it you are likely to die. I would prefer to know the status of peole, not to discrimate, but to understand.

When I had my second test I asked for the results (I assumed I was negative as no-one told me otherwise first time around), I had that frisson of fear, since I slept around in my youth and had contracted other STD's. But I was negative and this meant I know I am safe, my dh must be (he donates blood) so I can rest easy.