Breast is Best Presentations Debate and Discussion Event Lewisham University Hospital 31 st January 2018

Transcription

1 Breast is Best Presentations Debate and Discussion Event Lewisham University Hospital 31 st January 2018 Summary report Angelina Namiba The meeting was a mixture of presentations and a debate arguing for and against the motion: This house believes that the BHIVA guidance on breast-feeding should be revised. The current guidance states that: All mothers known to be HIV positive, regardless of antiretroviral therapy, and infant PEP, should be advised to exclusively formula feed from birth. The meeting was well attended and included a good representation of women/mothers living with HIV and a range of clinicians who provide our care. There were 6 speakers at the meeting: Dr Melanie Rosenvinge consultant in HIV at Lewisham Hospital who gave an overview of Mother to Child transmission in the UK., using data from the National Study of HIV in Pregnancy & Childhood ( Some key messages from her presentation included: Since the introduction of universal antenatal testing for HIV in the UK in 2000, the uptake of testing by mothers has increased to over 97%. This means that women who do test positive during pregnancy can be effectively treated in order to minimise the risk of HIV transmission to their babies. Sequential pregnancies have increased over the years, i.e. more mothers are choosing to have their second or more babies after diagnosis. Over the years, the mode of delivery has changed from routinely recommending c-sections to recommending vaginal birth for women with undetectable virus and only offering c-sections where there are obstetric indications or high viral load. Similar advice offered to women who do not have HIV. Timing for when mothers start taking ARVs in pregnancy is linked to the risk of passing HIV on. So the earlier they start, the lower the risk. Townsend CL, Byrne L, Cortina-Borja M et al. Earlier initiation of ART and further decline in motherto-child HIV transmission rates, AIDS 2014; 28 (7): Where transmissions have occurred in women who were diagnosed by delivery, contributing factors included: late booking, not engaging in care, non-adherence to ART and breastfeeding. Among women who were not diagnosed by delivery, contributing factors included declined HIV test and seroconversion during pregnancy. A lack of social support was found to be a contributing factor for all women in the audit (reference: National audit of perinatal HIV infections in the UK, : what lessons can be learnt? H Peters, C Thorne, PA Tookey, L Byrne. HIV Medicine

2 However, when all interventions are in place and mothers are well supported to stay engaged in care, the good news is that the rate of vertical transmission in the UK and Ireland among diagnosed women is now down to 0.27% (for births ). Catriona Waitt Senior Lecturer in Clinical Pharmacology at the University of Liverpool. Catriona, currently based in Uganda, joined the meeting by skype and presented on ART in breast milk: defining the risk-benefit ration. Key messages from her presentation included: 15 million women living with HIV globally become pregnant annually. To date, no studies have been done on the concentration of ARVs, also know as Pharmacokinetics or PK in infant mother pairs, despite FDA guidance. Yet this is an important area particularly as studies have shown that the risk of baby getting drug resistant HIV seems highest when mum is viraemic and exclusively breastfeeding as well as the fact that infant infection via breastfeeding is often linked to maternal viraemia and poor adherence. Studies have also shown that postpartum adherence is know to be challenging. She also presented on some of the risks and benefits of breast feeding. The benefits of breast-feeding which include very low rates of vertical transmission, even in breastfeeding populations; transmissions almost always associated with poor adherence or maternal viraemia and other multiple wider health benefits of breastfeeding far outweighed the risks which included, infant exposure to ARVs; the unknown risk of HIV resistance to the breastfed infant. She was followed by Dr Emily Mabonga from Lewisham Hospital who gave us an interesting overview of the BHIVA guidelines from 2001 to the present day. It was interesting to see how the guidance has evolved in terms of guidance about recommendations regarding infant feeding and how women were/are be managed if they chose to breastfeed. So for instance: In 2001, the guidance was for women to refrain from breastfeeding; and if a mother chose to breastfeed she should be given support and advised to breastfeed exclusively. At this point, the cart reduction in HIV RNA in breastmilk was unknown. The guidance also acknowledged that some mothers would require support with practicalities and finances. By 2005, the guidance was changed to formula feeding exclusively; mothers who chose to breastfeed faced potential child protection sanctions; cart reduction in HIV RNA in breast milk was unknown and support could be offered to women with limited funds. By 2008 the guidance was similar to 2005 with the main difference being that studies were beginning to show that cart may reduce HIV RNA in breast milk. By 2012, guidance changed again: Although the recommendation was still to formula feed exclusively, mothers who wanted to breastfeed should be 2

3 supported to do so if they maintained an undetectable viral load and attended monthly tests for themselves and their babies. Some evidence showed that cart can reduce HIV transmission from breast feeding; and that practical and financial support should be offered to women on a low income. She concluded with a reminder of the BHIVA 2018 guidelines which were out for public consultation (at the time this summary report was written). There then followed the debate which was chaired by Dr Stephen Kegg Consultant HIV physician Lewisham and Greenwich NHS Trust The window dressing for the evening as he introduced himself. One of the few males in a room full of women. The first speaker for the motion was Dr Judy Russell who spoke started the debate by speaking from a clinician s perspective. Main arguments/considerations for the motion included: Data from the National Study of HIV in Pregnancy and Childhood which carries out active surveillance of pregnancies with women living with HIV in the UK and Ireland ( shows that there are approximately 1,200 pregnancies in women living with HIV annually. The NSHPC has been collecting data on breastfeeding since 2012; since then there have been 40 children reported to have been breast fed; all the mothers who breastfed were reported to have had undetectable viral load; duration of breastfeeding ranged from 1 day to over one year. To date no transmissions have been reported however surveillance is ongoing and around half of the infants have not yet had a final confirmatory test. Judy also shared the experience of mothers breastfeeding at the Trafalgar clinic between July 2015 and December 2017; 8 women breastfed 9 children (one se of twins); all mothers had a viral load of below 40 at 36 weeks pregnant; the duration of breastfeeding ranged from 48 hours to 14 months; mothers attended for monthly viral load testing although monthly testing for some of the infants proved challenging; however, the good news is that, to date no transmissions have occurred to any of the 9 children. Breast is best and is free. However, it is important to ensure that breastfeeding should be a matter of choice and NOT just because it is free. See NAT policy statement supporting access to formula for mothers who do not breastfeed but cannot afford formula milk. For mothers, the decision between risk vs choice; and long term treatment and surveillance for both mother and children; another point to consider is the general risks that women face by being pregnant, particularly as there are potential high rates of maternal and perinatal mortality globally. The many good reasons why women living with HIV would chose to breastfeed, including: nutritional benefits to the baby; because it s natural & free; everyone else is advised to; to feel normal ; because if women bottle-feed people might 3

4 know that they are living with HIV and because partners and family might not know about their status. The risk of transmission from exclusive breastfeeding has been reported as 0.6% in African studies Regarding the concept of U=U: not enough is known about whether this applies to breast-milk. Guidance is available from the WHO around breast feeding for women who live in low income settings. WHO guidelines refer ONLY to women living in low income settings who live in a very different context to women in the UK and who are balancing a wide range of other health and environmental risks such as access to clean water, regular and up to date drugs as well as other diverse socioeconomic and cultural pressures. This advice is that mothers breastfeed for as long as they need to, up to 24 months or beyond provided they remain undetectable.. Judy mentioned that there were some still some clinical concerns including understanding of risk; the issue of continued drug exposure; increased follow-up for mother baby pairs (blood tests and visits); patients who disengage from care and mothers with drug resistance. She concluded her argument by reiterating that all mothers known to be living with HIV should be informed of the risk of vertical transmission via breast milk. If women wish to breast feed they should be supported to do so with the correct advice reduce transmission risk to a minimum. If a woman has issues which increase the risk of transmission such as detectable viral load, adherence issues, lack of engagement with medical services), then she would need additional efforts to counsel and support her. The second speaker for the motion was Susie, a mother of 4 who is currently breastfeeding her baby. (She bottle-fed her first 3) She gave an amazing heartfelt & honest presentation from her perspective as a patient, even though this was her coming out party, and the first time she had spoken about her experience to a large audience. A number of things contributed to her strong desire and decision to breastfeed. The conflicting information guidance about infant feeding, where the WHO advice women to breast feed vs the BHIVA guidelines which recommend formula feeding. She couldn t understand why her cousin in country X, who is also living with HIV could breastfeed and the baby not get infected whilst she was in the same situation but being given differing advice. The fact that decisions about my health were being made without my input. And the fact that for her, something as simple as breastfeeding could make her feel normal again. 4

5 The first speaker against the motion was Dr Hermione Lyall Paediatrician at Imperial College who presented from a paediatrician s perspective. Or as she put it, from the child s perspective in their shoes. Main arguments against included: The WHO guidelines are for a different setting where the rate of infant mortality for children who are not breastfed is high due to a number of factor including gastroenteritis, respiratory infections and malnutrition Prevention is better than cure and the UK has one of the lowest rates of vertical transmission. In in 50 babies were born with HIV; by it was 1 in 370 and we are now down to 0.27% over all. Do we really want to go back to those earlier days? The risk of transmission after birth, to babies who are formula fed is zero. There are still a number of risk factors for vertical transmission during breastfeeding namely: high viral load; low CD4 count; HIV infection during breastfeeding; mastitis; cracked nipples; duration of breastfeeding; mixed feeding; infant oral thrush & mother or infant D & V A recent observational study from Tanzania (KIULARCO study) suggested that breast feeding transmission did not occur in women with fully suppressed plasma viral load. However, this is early data and small numbers, not enough to say that U=U for breast feeding. that supports the argument. There is a need for patient information on HIV and breastfeeding which is clear and up to date; that considers women s wishes; with peer support in place and that guides women to the safest approach. There is a consensus on the UK & breastfeeding on ART in the new 2018 BHIVA guidelines which in the absence of any UK data (or any resource-rich setting), the safest thing is still to formula feed as this ensures zero risk of transmission. Any woman who wishes to breastfeed should be highly adherent to ARV; have a viral load below 50; be engaged with the multidisciplinary team; willing to have monthly tests for her and baby & understand and follow the SAFER triangle: No virus, happy tums and healthy breasts for mums. (Imperial College are in the process of finalising 2 leaflets supporting women who wish to breastfeed in the UK. One leaflet is aimed at mothers and the other at Healthcare professionals). There is a shift in conversation and women can now consider options for feeding their babies. However, the majority are still choosing formula feed as that is the only risk free option we still have. The last speaker against the motion was Paula Seery Children s Nurse Specialist at Imperial. Paula supported the argument against the motion by further reiterating some of the challenges that mothers living with HIV could face if/when they choose to breastfeed. These include: Having confidence in the choice they have made, over time. Especially if breastfeeding for long. They may need a lot of extra support 5

6 There are still a lot of grey areas in relation to safer breastfeeding. Maternal health problems; poor infant weight gain; abnormal blood counts which might not be serious, but which could cause anxiety; women receiving conflicting advice from HCPs eg around management of mastitis and breastfeeding especially if HCPs are not aware of mum s HIV status; coping with extra monitoring for mother infant pairs; decisions about when to stop breastfeeding some mothers who thought they would do it for a short time find it challenging to wean baby off breast which in turn can/increases risk of transmission over time. The reality is that some women who choose to breastfeed to avoid suspicions about their HIV status can be isolated. An audit done of 10 mothers who breastfed showed that 3 chose to breastfeed as a result of relatives coming to stay. Out of the 10 only 5 partners were aware of the mother s status. Women were also more likely to withhold consent for their HIV status to be shared with GPs (only 2 out of 10 consented), and 8 out of the 10 women had no community HCP aware of their risk of transmission. In cases like these, if family members and HCPs who are not aware of mum s HIV status might give advice that could put babies at more risk. Important: MDT role in helping women to feel less isolated during breastfeeding. Paula concluded by saying that the current BHIVA guidelines are working because the current statement has not stopped clinicians, where appropriate, encouraging informed decisions and supporting women with undetectable viral load (below 50 copies) to breastfeed over the last 5 years. Women who choose to breastfeed are being supported and such there is no need to change the guideline until we know the risk to the baby. Before the final votes, there was a panel Q & A where a number of questions were asked, issues raised & clarified and some recommendations suggested. A further couple of take home messages for me were: The risk of postnatal transmission during the breastfeeding period can be increased via mixed feeding, but not mainly through mixing bottle and breast, but by mixing breast and solid foods. We cannot definitely say that U=U applies to breast milk as this is still not yet know. And that pending data from the Promise Study may answer this. At the end of the presentations, the audience were asked to vote and majority 30 out of 39 people voted FOR the motion that the BHIVA guidance for 2018 should be revised. 6