(Copied to list and poster)
Pamela Morrison wrote:
<I am indeed saying that the AAP
are OK'ing exclusive breastfeeding with full maternal ART as an
approved second-line option, as do the British HIV Association guidelines.>
Then you're saying something that isn't correct. Both those groups discuss how best to handle the situation where a mother with HIV insists on breastfeeding *despite medical advice*, and both conclude (correctly, in my view) that in such a case supporting her to do so as safely as possible is likely to be a preferable option to involving social services and having the child forcibly removed. That is not the same as 'OK-ing it as an approved option', and it is clear from the recommendations that they are not doing so.
From the AAP guidelines (http://pediatrics.aappublications.org/content/131/2/391.full):
'An HIV-infected woman receiving effective antiretroviral therapy with repeatedly undetectable HIV viral loads in rare circumstances may choose to breastfeed *despite intensive counseling*. [emphasis mine] 20 This rare circumstance (an HIV-infected mother on effective treatment and fully suppressed who chooses to breastfeed) generally does not constitute grounds for an automatic referral to Child Protective Services agencies. *Although this approach is not recommended*, a pediatric HIV expert should be consulted on how to minimize transmission risk, including exclusive breastfeeding.' [emphasis mine]
From the BHIVA/CHIVA position statement on infant feeding in the UK (http://www.bhiva.org/documents/Publications/InfantFeeding10.pdf):
'BHIVA/CHIVA acknowledge that, in the UK, the risk of mother-to-child transmission through exclusive breastfeeding from a woman who is on HAART and has a consistently undetectable HIV viral load is likely to be low but emphasise that this risk has not yet been quantified. Therefore, avoidance of breastfeeding is still the best and safest option in the UK to prevent mother-to-child transmission of HIV.
BHIVA/CHIVA recognise that occasionally a woman who is on effective HAART and has a repeated undetectable HIV viral load by the time of delivery may choose, having carefully considered the aforementioned advice, to exclusively breastfeed. Under these circumstances, child protection proceedings, that have until now been appropriate, must be carefully considered in the light of the above and emerging data. *While not recommending this approach,* BHIVA/CHIVA accept that the mother should be supported to exclusively breastfeed as safely, *and for as short a period*, as possible. [emphasis mine] Thus,
*3. In the very rare instances where a mother in the UK who is on effective HAART with a repeatedly undetectable viral load chooses to breast feed, BHIVA/CHIVA concur with the advice from EAGA [7] and do not regard this as grounds for automatic referral to child protection teams. Maternal HAART should be carefully monitored and continued until one week after all breastfeeding has ceased. Breastfeeding, except during the weaning period, should be exclusive
and all breastfeeding, including the weaning period, should have been completed by the end of 6 months.* [emphasis original]
The 6-month period should not be interpreted as the normal or expected duration of breastfeeding in this setting but as the absolute maximum, since exclusive breastfeeding is not recommended beyond this period under any circumstances. *The factors leading to the
maternal decision to exclusively breastfeed should be regularly reviewed and switching to replacement feeding is advocated as early as possible, whether this be after one day, one week or 5 months.*' [emphasis mine]
Sorry, but it's simply disingenuous to describe this as the AAP or BHIVA OK-ing breastfeeding as an 'approved option'. They are clearly not. I find it extremely concerning that you are misrepresenting official advice in this way.
(Pamela wrote) <The interesting thing about this research is that there were special circumstances for the only two transmitting mothers. One simply stopped taking her ART.>
Yes. Sometimes people do that. People forget to take their tablets, or to pick up a prescription. In the US setting, there are also risks around availability of affordable medication and insurance cover. There might be all sorts of reasons why a patient might not take necessary medication. If HIV-positive women on medication are encouarged to go ahead with breastfeeding the reality is that a few of them will do exactly what this woman did - stop taking that medication while breastfeeding, and thus expose their baby to increased risk.
I'm also wondering about the potential risk of a baby in this situation receiving some formula, which we know increases the risk of HIV transmission in a breastfed baby. The study you're referring to took place in Botswana. Mothers in the US and UK are mothering within a culture where it's considered normal accepted practice to leave your baby temporarily with carers other than the mother (in fact, depending on the mother's employment situation, she may well be in a situation where it's impossible to avoid this) and where it's typically not considered any kind of a big deal to give a breastfed baby some formula now and again. They thus come under a lot of subtle societal pressure to supplement with formula, and this may even be done without their consent if another caregiver doesn't fully understand the risk in their situation.
I'm guessing – and stop me if I'm wrong, here – that this is an issue that doesn't occur to the same extent in Botswana, and thus that a British or American breastfed baby has at least a somewhat greater risk than a Batswana breastfed baby of getting some formula now and again even in cases where the mother has been specifically advised against it. Which would mean that we can't directly extrapolate from an extremely low risk in a Batswana setting and assume that the risk in a US or UK setting is going to be the same.
So, it's all very well talking about how low the risk can be in an optimised situation where the mother is taking her medication for the whole six months and the baby is exclusively breastfed... but that isn't going to be the actual, real-life risk to a baby whose HIV-positive mother tries to breastfeed in the US or UK. Yes, the risk is still going to be low. But it's not going to be zero, and for the unlucky few who will become infected if we advocate such an approach the consequences are going to be lifelong and potentially devastating.
(Pamela wrote) <The logical conclusion would be not to stop HIV+ mothers who want to breastfeed from fulfilling this ambition, (as we don't stop sero-discordant couples from having sex)>
...the key difference between the situations being that the other half of a sero-discordant couple is an adult who can decide whether or not zie is happy with taking the risk. Doctors do *not* recommend that an HIV-positive person has sex without telling zir partner of their HIV status, and, in fact, sexually transmissible diseases are one of the few circumstances where it may be considered ethical for a doctor to break confidentiality for purposes of passing this information on to a potentially at-risk partner if the potentially infectious person refuses to do so. In the case of a woman who wants to breastfeed, the other half of the dyad cannot consent to the risk.
Now, of course, the other reason we don't stop sero-discordant couples from having sex is that in practical terms it isn't possible to do so without placing unacceptable restrictions on their liberty. And we have a similar problem with mothers insistent on breastfeeding; at the end of the day, it's hard to stop them from doing so without forcibly separating mother and baby, and I agree with the AAP/BHIVA that, in a situation where the mother is treated and transmission is low risk, the potential harms of a forcible separation and social services involvement may well outweigh the potential harms of doing what we can to support the mother in breastfeeding as safely as possible. That doesn't mean that our only option is to throw up our hands and advise mothers that it's quite OK to go ahead. It is our responsibility as healthcare providers to make the risks and pitfalls clear to the patient and to make it clear that, for these reasons, we are advising against this course of action. It's clear from the wording of the AAP and BHIVA guidelines ('despite intensive counselling', 'having carefully considered the aforementioned advice') that this is what they advise doing. It concerns me enormously that you seem to be taking this as a green light and that you are publicly advising (elsewhere) that healthcare workers *promote* breastfeeding among HIV positive women in the UK.
Dr Sarah Vaughan MB ChB MRCGP
GMC no. 4193096
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