AIDS and an unfinished agenda for children
It takes a bit of courage to tell a room full of strangers about your innermost hopes and dreams. But for 12-year-old ‘Honda’ and the other young members of We Understand, courage is an everyday accessory.
All the young people in this Thailand-based group are living with HIV. We Understand, a nongovernment organization, provides them with treatment, care and emotional support. Dance, drama and drawing are used as therapeutic tools so these children – long silent, ignored and stigmatized – can communicate with others and express their feelings and experiences. For a recent Regional Partnership Forum on Children and HIV & AIDS in Bangkok, sponsored by UNICEF East Asia and Pacific Regional Office (EAPRO), they staged a multimedia performance of dance and art to provide a portrait of the lives they lead now, and the futures they hope to see.
“Our dream is to live the same way as others in this world,’’ Honda told the assembled adults during a question and answer session. Like the other young performers, she does not use her real name because of the persistent problems of stigma and discrimination. “Our dream is that people will understand and accept children living with HIV.’’
Two years ago, UNICEF EAPRO, partner organizations and representatives of government and civil society dedicated themselves to making the dreams of Honda and children like her a reality. In March 2006, after a three-day consultation in Viet Nam, they issued the ‘Hanoi Call to Action’. This breakthrough appeal asked governments and all actors in the response to the HIV and AIDS epidemic to put children and young people firmly on their agendas so they will no longer be “the missing face of AIDS”.
Endorsed by the Association of Southeast Asian Nations (ASEAN), it detailed specific steps for governments to scale up the response for the estimated 31,000 children in East Asia and the Pacific living with HIV (as of 2006), the nearly half million more orphaned by AIDS and the countless others vulnerable to or affected by the epidemic.
Representatives of children’s groups from around the region also attended that consultation. “They stated clearly that they hoped governments and other delegates would take action – not just talk,’’ said Anupama Rao Singh, UNICEF EAPRO Director.
Two years later, many of those who participated in the Hanoi consultation reconvened in Bangkok to determine if governments and delegates had lived up to their words. More than 130 representatives from 17 countries and organizations participated in the Regional Partnership Forum on HIV and AIDS, again sponsored by UNICEF EAPRO.
They agreed there had been definite advances during the past two years but that remaining gaps are huge and the road ahead still long. “We recognize that there has been much progress since the ‘Hanoi Call to Action’,” said Richard Bridle, Deputy Director of UNICEF EAPRO, noting that all countries in the region have initiated some degree of prevention, treatment, care and support programs for children with HIV and prevention of mother-to-child transmission of HIV (PMTCT). Some are beginning to scale them up. More country analyses exist on the status of children and HIV. More efforts are being made in monitoring and evaluating, which improves the evidence base for effective programming. Family and child-centred approaches are increasingly being adopted. Regional networks are expanding. Faith-based organizations (FBOs) are becoming more involved. Former Thai Prime Minister Anand Panyarachun told the Forum in his keynote address, “Those living with HIV no longer need to be doomed to lives of illness, alienation and penury.’’
And yet, many are. For all the successes, Anand and others cautioned, much more needs to be done. “It is clear that as the AIDS epidemic grows and matures, the number of children affected will increase,’’ said Anand, a UNICEF Goodwill Ambassador. “There is an urgent need to mobilize the political will and additional resources required to respond to this troubling increase in infections.”
The majority of those newly contracting HIV in Asia and the Pacific are young people: 25 per cent of new infections are among young, even adolescent, women who receive the virus from their husbands. “That’s a tragedy,’’ said Prasada Rao, Regional Director for UNAIDS, adding, “The current level of response is nowhere near optimal. Meagre resources are utilized for programmes with minimum effectiveness when it comes to preventing new infections.”
While the region spends US$1.2 billion a year responding to the epidemic, $3 billion is needed – at the very least – to turn the tide. Studies presented during the forum showed that HIV chiefly affects poor families and makes them poorer. Despite improvements in laws and policies, stigma and discrimination remain strong, and knowledge about HIV and AIDS remains weak. Less than 10 per cent of women in need of PMTCT receive it, and only about 20 per cent of children in need of antiretroviral (ARV) therapy are getting it.
Among the advances cited: Viet Nam completed a national situation analysis and adopted seven action plans. Cambodia established a multi-sector task force on orphans and vulnerable children. Transmission from mother to child decreased by 60 per cent in China. In Lao PDR, ARV treatment is now available in two provinces and will be scaled up to three more sites with Global Fund support. The Philippines developed guidelines on integrated management of paediatric HIV infection and AIDS. Thailand adopted a family-centred comprehensive HIV service model for infected women. Indonesia conducted a situation analysis to determine the status of HIV-affected children. China also conducted a needs assessment in three poor provinces and concluded that cash transfers were needed to support the health and education of affected children and families.
Reversing the HIV and AIDS epidemic is beyond the capacity of any single actor said David Claussenius, Asia Director of Save the Children USA, noting that “partnerships are critical.’’
Resources for the HIV response in the region are indeed coming from several quarters. Regionally, Australia has increased its funding and support for a number of programmes in Papua New Guinea, the Pacific Islands and the Mekong subregion. ASEAN established a series of five-year work plans for a regional response, endorsing the ‘Hanoi Call to Action’ and will introduce a wider range of strategies within two years. FBOs are providing nearly 40 per cent of health care in some countries.
Yet, with all this “the challenges are staggering,’’ said Jimmy Kolker, head of UNICEF’s global HIV section. Chief among them is reaching children and young people from most-at-risk populations. These include children whose parents are sex workers, injecting drug users, men having sex with men or belong to other groups that are driving the epidemic. Unless more effective strategies are adopted to reach these groups with prevention, treatment, care and support it will be difficult to stem the spread of HIV.
On the treatment front, more investment is needed in paediatric formulas for HIV medicines. Difficult to measure, messy and bad tasting medications translate to poor adherence on the part of the children, which leads to drug resistance and the need for expensive second-line treatments. Training for doctors and health care workers for counselling, testing and treating children and young people is desperately needed.
If that sounds daunting, it is in fact an opportunity. The range of services needed for HIV and AIDS is so wide that advocates of scaling up coverage believe that in doing so countries can improve their whole health care systems. A comprehensive response also offers the opportunity to strengthen social welfare and social protection systems. The Continuum of Care model championed by Family Health International and the PMTCT Framework developed by UNICEF, the World Health Organization, the United Nations Fund for Population Activities and UNAIDS are blueprints for expanding health care systems and making them more comprehensive. The process isn’t simple, as resources and training are required, but the road maps exist. With commitment it can be achieved.
Having reviewed progress and problems since the ‘Hanoi Call to Action’, the delegates at the Regional Partnership Forum agreed to appeal for further actions: improving coverage of prevention programmes with greater access to them for children and especially vulnerable children; continued scaling up of PMTCT; protecting and supporting children infected and affected by HIV and AIDS as part of national welfare and social protection systems; strengthening data collection and monitoring and evaluation; increasing resources for the response; addressing barriers to reducing stigma and discrimination; strengthening partnerships; encouraging meaningful participation in the response by children and young people; and promoting effective mechanisms to address violations of rights by children and their families infected and affected by HIV and AIDS.
“We need to ensure we continue to build on our achievements while recognizing that we still have an unfinished agenda,” said UNICEF’s Anupama Rao Singh. Having learned from each other through presentations on good practices and other experiences, forum participants renewed their commitment to their work.
As they prepared to leave Bangkok, they were armed not just with new strategies and information but also with inspiration from the children and young people of We Understand. It came from their moving performance, their artwork and their words. It came from their courage and their willingness to share their pain, their hopes and their dreams. “Now, we’ve passed our dreams on to you,’’ Honda told the delegates as the conference drew to a close. “We are asking that you help make them real.’’