Tuesday, 2 December 2008

World AIDS Day & HIV mothers in the UK

Last year, on World AIDS day, I commented on the statistics released by WHO, that breastfeeding whilst HIV positive, actually saved more babies than using formula, in most resource poor countries. That's if the mother has received no treatment at all, and is still actively being affected by the virus. Simply, formula feeding kills more babies, than unrestrained HIV replication in the mother's milk.
.
Most people are quite shocked to hear this. There is still enough phobia and prejudice around HIV (and woman and their diseased and infective bodies that drip contaminated fluids) that most people have a knee jerk fear of thinking about breastfeeding and HIV. This effect is amplified by the concurrent culture that sees formula feeding as safe and ultimately benign. Breastfeeding is always sacrificed on the altar of this combined ignorance: the dangers of the female body on one side, and the safety of the formula bottle on the other. Cow's milk, ripped out of over producing and engorged udders in factory-farmed conditions, then altered and modified in vast vats that are impossible to keep from bacterial contamination: dried to powder and then played about with ingredients not controlled or tested on human infants, pushed into tubs and sold at huge profits, with little to no awareness of the ingredient list, or how much contamination has taken place in the factory: is seen as a safer and more sensible solution than giving a baby its mother's milk.
.
Yet, as we've seen, less babies die from their mother's HIV infected milk, than do from formula feeding in resource poor countries. Where bottle culture, poor water supplies, lack of hygiene and poverty, will kill over 15% of babies being formula fed. The transmission rate for HIV in breastmilk, without treatment, stands at 4%.
.
What makes these facts even more shocking, in terms of looking at the prejudice on HIV and breastfeeding, is the transmission rate on HIV to the baby, if the mother is receiving proper anti-retro virals. That transmission rate is... zero. 0%.
.
I'll say that again. If a mother is receiving proper anti-viral treatment, during her pregnancy and breastfeeding.. the transmission rate to the baby of HIV, is a statistical zero percent.
.
In other words, HIV isn't transmitted to the baby enough times to even make it onto the figures. Figures that have over 15% deaths for formula feeding, but have no recorded transmissions of HIV to the baby.
.
Which brings me not to resource poor countries, where mothers aren't getting proper anti-retro virals. Not to resource poor countries where to bottle feed, is to invite death into your baby's crib. Not to areas where water is always a long way away, and not that clean to to start with.
.
It brings me to the UK. To HIV positive mothers here, in the UK, being told they cannot breastfeed. Being terrified that if they choose to do so, they will be reported to Child Protection Services, and their baby will be removed from them. Being told that formula feeding is the only safe option.
.
All of whom, are in receipt of full anti-retral viral treatment, free of charge. All of whom are regularly monitored for viral load and growth, and who are receiving the best standard of HIV care the world can offer.
.
All of whom are told, as standard, not to breastfeed.
.
None of whom, are told, as standard, that the ARVs they take, protect their baby if they breastfeed. None of whom are told that they can also choose to express their milk, heat treat it at home, and feed it to their baby if they want to be completely and absolutely certain they are not exposing the baby to HIV at any level. A simple, cheap and easy solution that has been designed to be safe in mud huts in villages - more than achievable by a Mum in her own modern kitchen.
.
None of whom are told that formula feeding, raises the risks of serious illness in their baby over their baby's entire adult life. That is raises the risk of cancers, diabetes, heart problems, sleep apnoea... well, you now the list. Formula feeding increases health risks; it's not news.
.
So, all these mothers, sitting there, doing 'their best' by their baby... completely unaware of the range of choices open to them. Completely unaware of the statistics and stresses and risks that can affect their babies... being told to formula feed despite the fact that at base, that doesn't make very good scientific sense. At base, it's a tricksy decision. It's a complex decision, requiring attention being paid to several fluid and interwoven factors. And that decision, and those factors, are reduced in the UK to... HIV positive mothers should formula feed. End of.
.
If you were HIV positive, would that blanket statement, depriving you and your baby of a chance of a fulfilling breastfeeding relationship, make you happy? Would you be happy not knowing that even if you didn't want to take the risk of actual breastfeeding, you could make sure your baby had your milk, and not cow's milk? Would you feel cared for in the NHS, if this was presented as your only option?
.
No, I wouldn't either.
.
But I tell you, at least I'd not be looking at my baby having a significant increase in its risk of death, an immediate and direct death, by this advice. And in that, in the UK, I'm a very lucky. For at least, in the UK, as a citizen, with rights, I'd know that if I did formula feed my baby, I wouldn't be contributing to its death later on, in a few months time. I'd have the luxury of knowing that formula feeding was as safe for my baby as I could make it.
.
Not so, all HIV positive mothers in the UK. Not so at all. There is a special group of HIV positive women in the UK, who are being consigned to their own private hell, over our HIV and breastfeeding policy - and that's mothers at risk of deportation. Mothers who have asked to be considered for refugee status as they've endured torture and persecution in the countries they have fled. Mothers deprived of all status and standing in UK society, whilst their claim is assessed. Many of them also deprived of hope. These mothers, who birth here in the UK, are on ARVs. Their milk is already as safe as it can be. And they are on deportation lists, for countries where formula feeding is so dangerous, that the WHO advice is for them to breastfeed - even if they are not on ARVs. Breastfeed at all costs.
.
Do we advise them to breastfeed? Do we look at their case for recognition of refugee status, recognise that they are on the short list to deportation, and that they are likely being deported to regions where formula feeding kills babies at the rate of 4000 per day? Do we then advise them accordingly, and point out that if they are deported, then the baby needs to be breastfeeding... and support them in establishing breastfeeding?
.
Do we hell as like. We tell them to formula feed. They're in the UK currently, no matter where they are heading out to - they formula feed. End of.
.
To then add insult to injury, we make the formula feeding as difficult as possible for them. We deprive them of proper income, and deny them the right to earn any money for themselves. We stick them on vouchers, in hostels, and expect them to live on income levels far far below that of Income Support, the catch all safety net benefit for those of us with citizenship, or status.
.
There is a mnemonic phrase to sum up the equating decision for when formula feeding is considered, especially as a replacement with HIV positive mothers - it's AFASS. Is replacement feeding:
.
* Acceptable?
* Feasible?
* Affordable?
* Sustainable?
* Safe?
.
In resource poor areas, the AFASS equation is vital in determining how a mother should feed her baby. Have a look at how detailed and thorough the WHO/Unicef training pack is for it. The results are pretty simple - if AFASS is applied, and replacement feeding is not shown to tick all the AFASS boxes.. the mother should breastfeed.
.
Well, an interesting thing happens if you apply AFASS to HIV mothers in the UK, awaiting deportation. AFASS requires they... breastfeed. And that's not just because they are going to a resource poor country, where the formula feeding fails in situ. It's also because AFASS determines breastfeeding, over formula... in the UK. You just have to look at one area - affordable. Whilst it shouldn't be happening at all, some mothers and babies in the UK, are left literally penniless in the streets because of our Immigration policy. Just last week, I was told of a mother and toddler, left stranded because the mother had had refugee status granted, and therefore her NASS vouchers stopped. But she didn't have the paperwork yet for Social Services support, and was left with no money. Her toddler was admitted to hospital for malnutrition - the child had had nothing but watery porridge for a few days. The mother hadn't eaten at all, for the same period.
.
In the UK.
.
Talk to any Church, or support organisation, and hear the tales of the mothers and children being fed by them, and some sleeping on Church floors. Does formula feeding survive AFASS scrutiny under these conditions? You bet your bottom dollar it doesn't. Mothers on NASS vouchers struggle to buy enough formula, and regularly water it down and try to fill it out with other things. Just as all mothers do, on low-incomes.. they don't understand the risks. With HIV positive mothers, this poses even more risk to the babies - for formula fed babies do contract HIV from their mothers, especially if the mother is introducing solids early. Introducing solids early, is a classic way to defer formula costs.
.
And in an irony of all damned ironies... most of these mothers are sent out of the country via Yarl's Wood. A detention centre that can run out of formula and feed a baby oral hydration solution instead! A detention centre where mothers are prevented from making safe feeds in their own rooms at night! A detention centre that doesn't pass AFASS!!!!
.
It's almost a sick joke, isn't it? Take an HIV positive pregnant woman. Treat her with ARVs, and give her excellent HIV care. Tell her to formula feed and don't inform her there are other options. Don't give her the financial support she needs to buy enough formula. Don't give her the living conditions she needs to prepare the formula safely. Lock her up in Yarl's Wood, and prevent her from making fresh formula safely in her own room at night. One morning, put her on a plane, and deposit her and baby, in a resource poor country, with no stocks of clean water or formula to get her through. Just deposit her and her formula fed baby, at the airport, and walk away.
.
And hope what.. she can relactate somehow on the plane? That standing at the airport, with a hungry baby in her arms, she can rush out and buy formula and make it safely? That she can now also afford the ARVs she needs to keep herself alive?
.
This is UK policy. This is what we do with HIV positive mothers in this country. This is what we do with HIV mothers who are on deportation lists.
.
Think it's good enough? No, neither do I.
.
HIV and breastfeeding is a huge issue. It is complex, it is ever changing. This post was about the updated statement from WABA, on World Aids Day, on AFASS and HIV and Breastfeeding. A statement that says that...
.
At six months, if replacement feeding is still not acceptable, feasible, affordable, sustainable and safe, continuation of breastfeeding with additional complementary foods is recommended, while the mother and baby continue to be regularly assessed.
.
... which is a change in policy. Prior to this release, both WHO and Unicef recommended breastfeeding cease at six months. This position is no longer supportable, as seen by the update.
.
But it's too easy to read the report, any report on HIV and breastfeeding, and think it's a problem that is happening somewhere else. We are a global village. The mother standing behind you in the queue in Tescos, with formula tins in her basket, may be buying it as she's been told to as she's HIV positive. She may also be on a plane, with her formula fed baby, next week, and dumped in a country where the baby's chances of surviving on formula are very slim indeed. Where if she'd birthed in that country, she'd have been told to breastfeed to protect her baby's health.
.
She may also be safe in staying in this country, as she's got a passport. But she's still using formula as she's HIV positive, and no one is listening to her pain over not being able to breastfeed. She reads about formula risks, but she knows formula is better than starving her baby... but every bottle cuts her to the quick. She feels she's failed in the Mum test - she's a living danger to her baby. She may not choose to breastfeed if you told her the ratio of risks, and the protecting effects of the ARVs she takes every day. She may not be able to hack expressing and pasteurising her milk. She may still be on formula, if you tell her what her options are... but at least it would have been her choice. Her informed choice.
.
And she may choose to breastfeed. She may choose to express and bottle feed her own heat treated milk. and she deserves our support in doing it. She deserves the support of her medical and social support agencies, operating from facts, not fear. She needs us to acknowledge that her feeding options are many, and not locked into the commercial pressures of formula companies and their needs for profit at all costs. (Those same formula companies promoting their formula as the 'HIV answer' in resource poor countries, despite the much higher death tolls.)
.
We need to get this straight. We need to pay attention to HIV and breastfeeding. We need to empower mothers to care for their babies, and to protect them. We need to stop sending out blanket messages about formula feeding and HIV, and actually pay attention to the science.
.
You could start by writing your MP, and asking them to justify the DoH advice on HIV and formula feeding, especially to those mothers under threat of deportation. This country either needs to support mothers in breastfeeding if they are under threat of deportation, or it needs to promise not to deport any formula fed baby under two years of age to a formula danger area. It's not rocket science - just common sense. Writing your MP has proven to be a very effective way of raising issues, and something that just about everyone can do. For those who truly struggle to formulate a letter, I've appended a draft at the bottom of this page. Write your MP - annoy them. That's what they are there for. They're paid to listen to your concerns, and to raise issues, and respond to you - use them!
.
You can also raise awareness by setting people straight when you hear people discuss HIV and breastfeeding. Let them know heat treating exists, is proven, is cheap, is under the control of the mother... and there's no need for formula unless the mother wishes it. Talk about the formula deaths, and how ARVs can be seen as a safe pathway to breastfeeding. Discuss facts, not fears. Talk openly about how heat treated human milk is a viable option, in AIDS orphanages, rather than formula. (Empower local women to be paid for producing human milk for human babies rather than spending money rewarding cows in some other country!) Of course HIV presents huge challenges to breastfeeding worldwide - but as a race, we're really good at coming up with huge solutions to huge challenges... as long as the need for profit doesn't stomp people into the ground. As long as fear of being human...of having a body that can carry disease... doesn't block out all ratonal thought.
.
I'll leave the final words on this to Pamela Morrison, Co-ordinator WABA Breastfeeding and HIV Task Force:
.
In the context of HIV exclusive breastfeeding during the first 3 months of life followed by continued partial breastfeeding for 15-18 months has been shown to reduce breastfeeding-associated transmission of HIV to 5-7% (a reduction of 60% compared to previous estimates of risk during mixed breastfeeding) and to reduce young child mortality due to HIV and other infections to ~2% in circumstances where underlying infant mortality may be as high as 20% and where formula-feeding has been shown to provide no HIV-free survival advantage. A recent large study from South Africa shows a 4% risk of transmission over 6 months of exclusive breastfeeding, achieved by 83% of the mothers recruited into the study. Thus, exclusive breastfeeding for the first half-year of life provides dramatic protection against all causes of infant morbidity and mortality, including HIV, and research published subsequent to early recommendations clearly shows that previous estimates of HIV-transmission during any "breastfeeding" can be dramatically reduced.
.
Recommendations that HIV-infected mothers should be supported in a choice not to breastfeed need to be viewed against the backdrop of women’s vulnerability, aggravated by the harsh biological, economic and social realities in countries suffering from poverty and inadequate resources where the potential for commercial exploitation of this tragedy is self-evident. Taken together, high HIV prevalence, loss of confidence in breastfeeding, and provision of free supplies of formula, sometimes exceeding need, have the potential to destroy the cultural breastfeeding norm in communities whose babies most need its protection, and contribute to “spillover” into the uninfected population.
.
Safe feeding decisions cannot be made without up-to-date information, and should not be framed as an option when the consequences may impact on a baby’s survival. Infants have the right to be fed in the way that maximizes their chances of good health and survival. Mothers have an entitlement to receive clear medical advice about the safest way to feed their babies in the face of their personal living conditions and locally prevailing risk factors. Failure to provide appropriate information, while promoting private maternal rights over public infant health, leaves babies at risk for exploitation by the infant food industry.
.
.
.
Dear MP,
.
I'm writing to register my unease over the UK's current policy of supporting HIV positive mothers, and their babies, who are locked into the asylum system. It's come to my attention, that we advise HIV positive mothers, under threat of deportation, to formula feed. and then we deport them and their babies to areas where the WHO and Unicef advice is to breastfeed, even if HIV positive. The death toll from inappropriate formula feeding practices being several times higher than the HIV transmission rate from breastfeeding. Surely this is an inhumane policy? If we are deporting HIV positive mothers, to areas where they are advised to breastfeed to support their infant's health, surely we should support them in breastfeeding? I'd appreciate your own thoughts on this matter.
.
Would it be possible for you to obtain official figures for me, on how many babies are being deported from the UK, on formula versus breastfeeding? And which countries these formula fed babies are being deported to? I'm eager to understand how many mothers from the UK, are deported whilst breastfeeding, versus formula feeding. This is in isolation to the HIV issue. Although if there are figures about how many HIV positive mothers are deported, with their babies being formula fed, every year, I would be interested in seeing them.
.
Many thanks
.
your constituent...

7 comments:

Amity said...

Thank you so much for putting this information together in a coherent way. I've been unsure of how to view HIV and breastfeeding and this has given me a very good start on informing myself.

RM said...

Thanks Morgan, I was reading this thinking "...so what can we DO!?" and at the end you have told us!!!

Valerie W. McClain, IBCLC said...

Morgan, I have looked at this issue since 1999 in the USA and I still have many questions regarding our society's presumption of the safety of infant formula in developed countries. For instance, I live in Florida. The county next to mine which is in Orlando, home to Disney World, has a white infant mortality rate of about 3% but their black infant mortality rate is 19%. In Shreveport, Louisiana, home to many displaced Hurricane Katrina survivors the black infant mortality rate is 32%. Yet we are a developed nation and thus all hiv positive mothers will be told to use infant formula. Babies in my county in Florida in 2006 died from pneumonia, diarrhea/gastrointestinal illnesses, SIDS, RSV. (breastfeeding protects infants from these diseases-particularly exclusive breastfeeding) Not one died from hiv/aids. Yet so much of our health dollars are going for hiv/aids "testing" and meds. The same thing is happening in Africa. This is short thinking in terms of economies in a recession or poor developing nations.
Anti-retroviral meds are DNA-chain terminating drugs. They have serious side effects. Many hiv-positive people in this country find them difficult to take because of the vomiting and diarrhea.
The belief that hiv has been found in breastmilk is a fallacy. Hiv has never been found in breastmilk because the factors such as lactoferrin and other components inactivate the virus. Synthetically-derived hiv (gmo) has been placed in human milk and studied. If anyone has the name of a study in which they have found hiv in human milk, please let me know. The belief that hiv is transmitted through breastfeeding is not a fact. Even PCR testing on infants in the first month is a 50/50 bet. Babies carry their mothers' antibodies for up to 18 months (some experts think even longer than that). No test can distinquish between maternal antibodies and the baby's own antibodies. Our science has jumped to conclusions about MTCT of hiv through breastfeeding. The question that needs asking is when did we start to believe that the presence of antibodies in the blood means we are sick? Antibodies use to mean that we were well but at some point in time had contacted the disease and our bodies fought it off. Now being antibody positive for a disease means we are sick. The science behind this disease is totally corrupted by greed and an unwillingness to investigate the science. The safety of infant formula in developed nations is based on what evidence? Two infants in New Mexico just died from e.sakazaaki that they got from powered infant formula. One infant in my state of Florida nearly died from water intoxication (watering the formula down because the mother could not afford it). Breastfeeding advocates need to rethink their position that AFASS is a workable rationale in any country in the world.

Morgan said...

Valerie,

My views on the (presumed) safety of infant formula in resource rich areas, is pretty well documented. I very nearly took a side bar into this post, on that very issue, but decided not to, as I was highlighting the very specific issues around women facing deportation to resource poor areas. 15% mortality due to formula feeding just isn't arguable for those women, versus the uproar when you point out infant mortality is higher on formula feeding, even in 'rich' areas. But I didn't want that argument about the precise figures on 'Western' formula deaths, to cloud the very urgent issues for women seeking refuge. So I felt I'd concentrate on that. Thanks for you input here. :-) I personally side with you, on our assumptions about HIV transmission, but I do respect the opinon of those who have worked in Africa, and seen the death toll for themselves. There is an actuality that there is a great deal we still don't know. Hence it being vital to keep an open mind. :-)

But no matter on whether or not it's proved - it's still down to empowering each mother to make her own pathway, and not for us to blanket enforce an approach, especially when it doesn't sit well with the science we do have access too!

Anonymous said...

Valerie could you provide the source of the stats you cite? I'd be interested to follow this up.
Karleen

Valerie W. McClain, IBCLC said...

Morgan, I believe that what you are doing is very important work. We all need to know the consequences of policies by governments which impact mothers and babies in negative ways. Silence is acceptance. I applaud your continued efforts to make us aware of issues impacting refugees in the UK. My viewpoint on hiv/aids and breastfeeding is vastly different from the current accepted views. After seeing the number of patents on human milk components to inactivate and treat hiv/aids, I find it impossible to believe current accepted theories.

Karleen,
The stats on Shreveport, Louisiana have been reported in various articles. The black infant mortality rate is 32.7. This article says that the stats are from the National Center for Health Statistics.
http://www.wsws.org/articles/2007/may2007/mort-m03.shtml
The statistics from Florida are available from Florida Vital Statistics. The stats I gave regarding Orange County (actual stats for 2007 are white 4.6 and nonwhite 12.1) are not right. I was doing it from memory and I have looked at so many charts that I should not rely on memory. The County near me is Seminole and in 2007 the white infant mortality rate was 3.4 and the non-white infant mortality was 15.1. Gulf County which is in the Florida panhandle has a white infant mortality rate of 0.0 and a non-white infant mortality rate of 66.7. Nassau County includes northern Jacksonville. Their white infant mortality rate is 5.6 and nonwhite rate is 26.7. This is for infants under 1 year. Nonwhite includes hispanic, chinese, etc who historically have lower infant mortality rates. Thus combining black and other races into a nonwhite category will lower the rate and make the disparity look less appalling. Although the disparity is pretty appalling anyway. The numbers seem to vary from year to year. But in email correspondence with a statistician from Florida Vital Statistics, the current trend seems to be a worsening of infant mortality rates for all infants. Florida was one of the first states to feel the impact of the recession--economy based on tourism. Breastfeeding should be a public health priority but as you probably know our health care system values "choice" over health.
http://doh.state.fl.us/Planning_eval/Vital_Statistics/
click on Annual Report under Vidal Quick Links

Anonymous said...

Hi Valerie,
Thanks for the details on where the info came from....the numbers in the article show number of deaths per *thousand* births not hundred births so the details for Shreveport are 32.7 per thousand ie 3%...still very bad.Karleen