Speakers:
Dr Chewe Luo, Senior Programme Adviser, UNICEF

Kate Harrison, Senior Technical Adviser, Children, International HIV/AIDS Alliance

Dr Siobhan Crowley, Department of HIV/AIDS, World Health Organisation (WHO)

Chair:

Caroline Harper, Research Fellow, ODI

1. The chair, Caroline Harper introduced the session pointing out that 10 million children under 5 die each year, many of them dying of HIV related complications. Additionally, less than 10% of children in need of paediatric treatment are receiving it. This represents a severe failure on part of adults to protect children

2. Chewe Luo started her presentation by emphasizing that concerted efforts and actions are needed and that currently children are the missing face of the HIV response.

3. She continued by identifying what we know in relation to paediatric HIV care and treatment. Regarding disease burden, for instance, we know that over 90% of children acquire HIV from their mothers; we also know that of the 135 million women giving birth annually, 2 million are HIV infected. At the same time, only 8% of HIV+ pregnant women in resource limited settings are receiving ARVs for Preventing Mother-to-Child Transmission (PMTCT).

4. The above has led to undermining the gains that have been made in relation to child survival. Over 20% of child mortality in Africa is attributable to HIV. By 6 months, 21% of children born to HIV+ mothers are lost, mostly due to opportunistic infections. By the time a child reaches the age of 1, 1/3 have died, by the age of 10, 75% have died.

5. She also pointed out that we know that children respond well to treatment; even using simple medications (e.g. cotrimoxazole) which are widely available and cheap can make big improvement. She asked why we are not giving them to children?

6. She discussed a case study from Thailand as evidence of success in providing ART to children.

7. She went to give reasons for the lack of response. She said that one bottleneck is the lack of understanding of the needs and numbers of children that are being affected. As of 2005 it is estimated that 660,000 children globally need ART, of which 200,000 are under the age of 18 months. Out of these 660,000 approximately 600,000 are in Sub-Saharan Africa.

8. Whilst adult access to treatment is increasing, child access is not. She argued that at least 15% of those on treatment should be children.

9. Chewe went on to explore how to get children onto treatment. She raised various opportunities and challenges: whilst antibody testing is becoming widely acceptable, and there is a move towards providing mothers with a routine offer of testing, this is mostly for adults and is still not widely nor adequately integrated into child care services. She pointed out that regarding staging of the disease, there are still problems identifying which child needs to get onto treatment.

10. She called for a better organisation of services and a team approach in order to identify children needing care and providing them with optimal care. She also described the possible entry points for ART for children, highlighting that PMTCT is key and at present in Cameroon, for instance, only 9.1% of the children are brought in through PMTCT.

11. She listed components necessary for effective programming. These include: improved management and coordination, setting of country level targets, developing provider competencies, developing M&E systems, developing appropriate formulations, supply forecasting, procurement and management.

12. She spoke about the 3 continuums of care for a comprehensive paediatric treatment response. She stressed the importance of scaling up of PMTCT, moving from pilot to implementation at scale and listed the possible ways of doing it including, strengthening human resources and decentralisation of management structures.

13. She concluded by saying that with commitment and adequate financing we can save children.

14. Starting with a short overview of the Alliance's mission in which a focus on the role of community is a key aspect of the HIV/AIDS response, Kate Harrison reminded the audience through use of a quote from a member of a community in Zambia that 'HIV is seen in the clinic but lives in the community'.

15. The community has multiple roles including advocating for treatment through encouraging PMTCT; raising awareness at community level; combating issues of stigma; encouraging services to be more user-friendly; advising, encouraging and making links and referrals.

16. She continued by pointing out that children live in a set of nested circles of support, first of which is the family, then the community, then service providers then policy makers and wider supportive environments

17. She also pointed out that children are not separate, they are part of families and in many countries children make up half of the populations. As such they are vital actors in the response.

18. The Alliance has developed a tool, the Treatment Journey, as a way of carrying out person-centred planning. It identifies the journeys that people take in the search for treatment, ranging from chatting with peers, to going to traditional healers to go to clinics.

19. She stressed that treatment is much more than just getting and taking medicine. Managing of treatment in terms of adherence, side-effects, nutrition is part and parcel of treatment as is support to ongoing treatment. Families and communities have a role to play in this as well as providing palliative care to children.

20. As children grow up, and as we start seeing children who have grown up with ART issues around disclosure, confidentiality, sexual behaviour will all become important.

21. Siobhan Crowley started her presentation by giving an overview of the situation discussing the rates of new HIV infections amongst children and the impacts of AIDS on under-5 mortality rates. Like Chewe, she stressed the reversals in gains in child health and survival She continued by saying that HIV is almost entirely preventable in children through.

22. Taking a life course approach, she looked at the challenges children face at different ages infants (<18 mths), children (18 mths-10 yrs) and adolescents (>10yrs). Challenges include diagnosis, toxicity, adherence, sexuality and fertility.

23. She outlined the necessary elements for public health programming for HIV care which include multiple entry points, family friendly care, chronic disease approach and integrated care and decentralisation of delivery.

24. Generic implementation challenges exist and include health system constraints, duplication and fragmentation of resources and SWAP approaches looses focus on children.

25. In answering the question of why there is lack of progress, the speaker discussed biomedical factors limiting progress (e.g. limitations of ARV drugs for children); operational factors (e.g. limited paediatric expertise); global and local issues (e.g. lack of sustainable funding "easier to let them die") and advocacy having failed to position children

26. She said a sense of what is needed to make things work exists, e.g. access to ART and community and HB approaches. An enabling policy environment is also crucial. She stressed the importance of knowing the detail, e.g. if there is a policy on HIV testing it is necessary to specify when, how, who, by whom, confidentiality, etc. If not it will not happen. There is also need to be explicit about non-medical interventions.

27. She pointed to the limited coherence in relation to a range of activities which impinge on child health, including ART roll-out, HIV testing roll out, PMTCT, plan of action for OVC and nutrition.

28. She continued by identifying what she referred to as current "hot topics". These included: diagnostics - which are difficult in children, but there are some innovative approaches already being used and could be scaled-up, e.g. dry blood spot (DBS) and provider initiated HIV testing; breastfeeding; follow-up; drugs - cost, amount, taste. Another hot topic was the obstacles for pharmaceutical companies who are afraid to invest because they do not know what is exactly required.

29. She concluded by saying that the vision needs to change and that in order to achieve an HIV and AIDS free generation it is essential to get prevention right.

Discussion

- The Chair started the discussion by asking what about the big donors, why are children not on their agenda? What pressure can be put on companies? She pointed out that it is a question of political will, and questioned whether governments were really committed. Chewe responded that over the last 2 years UNICEF has been trying to get the momentum going, to move forward, to put children onto the agenda, working closely with WHO to provide guidance and tools. She acknowledged that it was frustrating but also pointed out some success stories. She also said that no one at policy level was taking stance. There is need to put pressure on Pharma, saying that need simplified doses, etc.

Other points raised included:
- Whether one can realistically undertake large scale paediatric treatment in resource poor countries, saying that the medical side is not yet good enough. She listed many challenges, e.g. the failure of syrups, that some people break adult tablets, that nutrition is still a major issue as are side effects, that the India FCDs they are accessing only have a shelf life of 1 month.

- Because many countries have the pressure of reaching targets, it is easier to put adults onto treatment and therefore get the numbers, rather than struggle with trying to treat children. The reality is, therefore, to forget the children and go for adults.

- The cost of preventing child acquiring HIV compared to the cost of treating once they are infected. Chewe referred to a recent study that UNICEF had done, just focusing on drug costs, UNICEF has estimated that for the mother/baby pair treatment it costs around $40-50. These are not using generics so the cost may be less if good generics are used. For treating one child per year it costs $300-500 just for the drugs, this is based on WHO recommended first line regimen.

- Kinds of support could families be given so that the responsibility for caring does not end up falling down to the children. Kate responded to the comment on the role of children becoming the carers in the families. Whilst there are some child headed households, evidence also shows that most children become absorbed into extended families; only about 1% of orphans are in fact living in child headed households. It is an emotive issue, but we need to understand the reality. She continued by saying that there is evidence showing that children are in fact having more difficulties when their parents are alive. There is need, therefore, to pay more attention to children living with sick adults which currently is neglected. There are reports of children's situation improving once the parent has died and they are taken into more stable households. She stressed the importance of children have consistent access to schooling as this has big impact on their lives; in particular she stressed early childhood education which often gets forgotten. She concluded her comments by answering the Chair's question regarding why this topic was not on the donors agenda. She suggested that reason for this was that perhaps it was not enough on our agenda. The US government has led the way; DFID and the Clinton foundation have also made large steps, but others are not. They are currently for instance, lobbying the EU which is currently not talking enough about children.

Siobhan stressed the need for national commitment to respond to the problem. She pointed out that HIV has changed the health care dynamics. The paradigm has changed, things are not easy. But just because it is difficult it does not mean it should not be done. She pointed out that there are some countries where paediatric treatment is working, e.g. South Africa, Malawi. There is the need for locally led responses, governed by what is required. And there is the need to learn how to do it better. Currently Children are not considered in treatment paradigm.

Chewe added that there were success stories and evidence from, e.g. Thailand and Cape Town. She concluded by saying that this missing link in this picture is government commitment.
- Acceptability of paediatric formulations.
- Whether there is any evidence available from countries where things may be working.
- How coordination and interactions between of different agencies, e.g. UNICEF, WHO, was working. Chewe responded: UNAIDS is the coordinating mechanism, a task team has been set up with a division of labour and tasked to come up with a structured mechanism to provide TA to countries. She continued by saying there is a clear division of responsibilities: PMTCT I- UNICEF and WHO co-convene the technical leadership; Care and treatment - WHO with UNICEF supporting from behind with respect to paediatric treatment. With respect to how they work together, for PMTCT they have expanded interagency task team bringing together the UN family and key actors in the field into 1 forum with the aim being to try and harmonize business on the ground.

The Chair concluded the session by saying that children coping with a number of other critical illnesses as well as HIV. That it is incumbent upon all of us to bring higher up the agenda. Thanking the speakers, the seminar was closed.