Orphans

UNAIDS Executive Director Michel Sidibé (left) plays with a two-year-old boy at a specialized centre for children living with HIV near St Petersburg, Russia.

On the first of a four-day mission to the Russian Federation, UNAIDS Executive Director Michel Sidibé and UNAIDS Goodwill Ambassador James Chau visited a specialized HIV clinic near Saint Petersburg that cares for children who have been orphaned by AIDS and pregnant women living with HIV. The UNAIDS delegation toured the facility with its chief physician, Dr Evegeny Voronin, a leading AIDS expert in Russia.

“We receive children from all over Russia—mainly, the most severe cases of HIV infection,” said Dr Voronin, head of the Centre for Prevention and Treatment of HIV Infection in Pregnant Women and Children. “The overall strategy is that children are treated in their place of residence and sent to us only when there is no other choice,” he added.

Providing high quality treatment is just half the battle, says Dr Voronin.  After addressing a child’s medical needs, he and his team of social workers turn their attention to the social and psychological environment—crucial elements in the health and development of any child, particularly one living with HIV.

“Here at the Centre, we try to do everything we can so that the children don’t feel different from children in families,” said Dr Voronin, adding that his team encourages the children to dance, play music and participate in group activities to help them become more socially engaged. “But this Centre will never be a substitute for a real family,” he said.

During their tour of the Centre, Mr Sidibé and James Chau were treated to a musical performance by five pre-school age girls and one male toddler. “Being here gives me great hope,” said the UNAIDS Executive Director. “When they first came to this Centre, many of the children were unwell and couldn’t speak. Now they are dancing, singing, healthy and thriving,” he said.

According to government statistics, an estimated 5200 children under the age of 15 were living with HIV in the Russian Federation in 2010. More than 22% of children living with HIV are orphans or have been left behind without parental care.

Perceptions around HIV slowly shift

Dr Voronin notes that in Russia’s larger cities, social stigma towards people living with HIV is less pronounced than in remote regions of the country, as people tend to have access to more information. “Here in St Petersburg, HIV is not a rare disease—there are more than 40 000 people living with HIV,” he told the UNAIDS delegation. “People recognize that HIV-positive people are the same as everyone else.”

As HIV becomes more widely understood and accepted in Russia, the number of adoptions of children living with HIV is on the rise, says Dr Voronin. Five years ago, he says, only 10 out of 350 abandoned children were adopted in Russia—mainly by employees at his Centre or people of religious faith. Today, 100 per cent of girls under the age of seven at the Centre are adopted by families.

“These children are sons and daughters,” said James Chau, a well known television personality in China who works with UNAIDS on stigma and discrimination issues. “If we succeed in breaking the last barrier—social stigma—we will turn a fundamental corner in the HIV response. I am incredibly encouraged by what I see at Dr Voronin’s Centre.”

Preventing new HIV infections in children

In addition to caring for children living with HIV, the centre works to prevent new HIV infections. “Over the past two years, we have achieved zero per cent transmission of HIV from mother to child among 300 women seen at our centre,” said Dr Voronin.

He noted, however, that about 15% of pregnant women living with HIV across Russia seek treatment too late in their pregnancies—immediately before or during labor—and give birth to about 50% of all HIV-positive children in the country.

A version of this story is also published at www.unicef.org

Charles Aheebwa at home with his two months old sister Kaseo. Mugamba, Uganda.
Credit: UNICEF/Tadej Znidarcic

Global efforts to improve the lives of children affected by HIV are increasing but still fall short of the growing needs of millions. An estimated 16.6 million children have lost one or both parents to AIDS-related illness, the vast majority in sub-Saharan Africa.  

This year’s Global Partners Forum on children affected by AIDS brings together 100 high level representatives from governments, civil society, donors, international organizations and academic institutions in an effort to promote evidence-based approaches to improve the lives of children affected by HIV. Under the heading Taking Evidence to Impact, the event, starting 3 June in New York, is jointly hosted by UNICEF, the US President’s Emergency Plan for AIDS Relief (PEPFAR) and UNAIDS.

Keeping mothers and children safe from HIV

Efforts to prevent new HIV infections among children child are critical and can serve as an entry point for care and support for the whole family, particularly through better integration of couples testing and counselling; HIV treatment, care and support; and linkages with HIV testing and treatment within child health services.

“Every mother, father and child should have access to comprehensive health care which includes HIV prevention and treatment,” said Michel Sidibé, Executive Director of UNAIDS who will participate in the forum. “Parents should be given the chance to protect their children from HIV and access life-saving antiretroviral medicine for their own health.”

Enormous challenges

Many children affected by HIV continue to face enormous challenges, including the burden of care for sick relatives, trauma from the loss of parents, economic distress and high health costs. There can also be a heightened risk of early sexual debut and abuse, which can make children—particularly girls—more susceptible to HIV infection.

“These children have already experienced the tragedy of losing a parent or a loved one to AIDS only to be subjected to stigma, discrimination and exclusion from school and social services,” says Dr Anthony Lake, UNICEF Executive Director, “To help these children reach their full potential, we urgently need to invest in national social protection programmes that fight poverty and stigma, and which address the special needs of HIV-affected families.”

Ambassador Eric Goosby, US Global AIDS Coordinator, agrees that targeted investments are needed to improve the lives of children affected by the epidemic. “The U.S. Government is the largest supporter of programs targeting orphans and vulnerable children, and we remain firm in our commitment. Moving forward, we have a shared responsibility to make smart investments that will ultimately ensure a positive future for children affected by HIV/AIDS.”

The two-day forum will review:

• Lessons learned at country level to support children affected by HIV and their families;
• Mechanisms that protect such children from marginalization and discrimination, and increase their access to key social services;
• The importance of child sensitive social protection and strengthening social welfare systems for increasing access to HIV prevention, treatment and care services;
• Increasing the impact of investments and achieve better results for those in greatest need.

The recommendations from the Global Partners Forum will be reflected in discussions during the UN High Level Meeting on AIDS in New York from 8-10 June 2011.

Global Partners Forum

The Global Partners Forum was first established in 2003 to give momentum to fulfilling global commitments for children affected by AIDS laid out in the United Nations General Assembly 2001 Declaration of Commitments on HIV/AIDS and the Millennium Development Goals.



According to UNAIDS, there are 16.6 million children worldwide that have lost one or both parents to AIDS-related illnesses, almost 15 million of them live in the sub-Saharan Africa region.
Credit: WB/ C.Carnemark.

On 5 May, the External cooperation office of the European Commission provided a platform for representatives of self-support organizations for people affected by HIV from the African migrant community in Brussels to present on the situation of children orphaned by AIDS and other vulnerable children.

Organized by community organizations in collaboration with the Joint United Nations Programme on HIV/AIDS (UNAIDS) and the European Commission, the session brought together officials from the European Union (EU) institutions, permanent representations of EU Member States, civil society and other EU stakeholders.

Speaking at the conference hosted by the European Commission, Loraine Mukazi, who was herself orphaned by AIDS, spoke up for the millions without voice, “Being an AIDS orphan is to become an adult very quickly, a parent for your own parents, a head of a family.”  She added, ”Losing a parent is already difficult, losing a parent to AIDS even more so, as you are confronted with the denial, taboo, stigma and countless questions.”

While fewer people are becoming infected with HIV and fewer are dying from AIDS, the epidemic continues to leave behind a growing number of orphans. According to UNAIDS, there are 16.6 million children worldwide that have lost one or both parents to AIDS-related illnesses, almost 15 million of them live in the sub-Saharan Africa region.

In addition to the trauma of losing a parent, orphans are often subject to discrimination and may be less likely to receive healthcare, education and other needed services. In HIV-affected households lacking social protection or community support, food consumption can drop by 40% putting children at risk of hunger, malnutrition and stunted growth. Impoverished, and without support to educate and protect themselves, orphans and vulnerable children face increased risk of HIV infection.

One of UNAIDS goals outlined in its 2011-2015 strategy is to ensure that all households affected by HIV, including orphans and vulnerable children, are addressed in all national social protection strategies and have access to essential care and support.

Social protection programmes can effectively increase the nutritional, health and educational status of children and reduce their risk of abuse and exploitation, with long-term developmental benefits. Experts agree that child-sensitive social protection should focus on aspects of well-being that include providing adequate child and maternal nutrition; access to quality basic services for the poorest and most marginalized; supporting families and caregivers in their childcare role; addressing gender inequality; preventing discrimination and child abuse in and outside the home; reducing child labour; increasing caregivers’ access to employment or income generation; and preparing adolescents for their own livelihoods, taking account of their role as current and future workers and parents.

Henning Mikkelsen, UNAIDS Representative to the European Union, expressed the hope that the upcoming General Assembly High Level Meeting on AIDS will lead to better social protection for families affected by AIDS and break the vicious circle where orphans and other children become highly vulnerable to HIV.

UNAIDS Executive Director, Michel Sidibé visiting the Association Viva Cazuza which cares for orphans and adolescents living with HIV in Rio de Janeiro, Brazil, 26 March 2009
Credit: UNAIDS/D. Ramalho

Viva Cazuza has been working for nearly two decades in Rio de Janeiro to give orphaned children and young people living with HIV a safe haven, antiretroviral treatment and access to programmes to gain confidence and build leadership skills.

The society was created in 1990 in the memory of Brazilian rock star Cazuza who died of an AIDS-related illness in the same year. It’s a non-profit organization that provides a home for 20 children and adolescents, aged 2 to 16, who are living with HIV. Many of the home’s residents were abandoned at birth or left in the care of the Society at a later stage in their life.

Click on the image to start video

Cazuza’s mother, Maria Lucia da Silva Araujo, established the society with the support of the musician’s friends and the broader artistic and philanthropic communities. Since its founding, the society has helped more than 80 children.

UNAIDS Executive Director Mr Michel Sidibé took the opportunity to visit the Viva Cazuza Society on 26 March during his official visit to Brazil.

UNAIDS Executive Director, Michel Sidibé visiting the Association Viva Cazuza which cares for orphans and adolescents living with HIV in Rio de Janeiro, Brazil, 26 March 2009
Credit: UNAIDS/D. Ramalho

During Mr Sidibé’s visit of the residence, he was impressed by the passion and committed displayed by Maria Lucia da Silva Araujo in helping children living with HIV and advocating for broader prevention awareness. He said that her work is “more than just helping, but recreating life” for its residents.

Many of the older children are engaged in peer HIV prevention and sex education groups. Fifteen-year-old Leonardo is a member of a group that meets monthly to talk about prevention. He aims, through dialogue, to break down the prejudices of others that are the root of stigma and discrimination.

Viva Cazuza was established by Maria Lucia da Silva Araujo (centre) in memory of her son, Brazilian rock star Cazuza, who died of an AIDS-related illness in 1990.
Credit: UNAIDS/D. Ramalho

Beyond providing assistance to children and adolescents, Viva Cazuza also offers HIV treatment support to adults from the surrounding neighbourhood. Each Wednesday, more than 100 people stop by to get their antiretroviral medicine and, if they need support, have a chat with a counsellor.

The next step for Viva Cazuza is to help its growing young residents prepare for adulthood and their coming independence. Empowering them with a range of skills will help ensure their continued health and well-being after they leave the centre, including management of their treatment.

This story was first published on UNICEF.org

Clementine, 18, and her sister, both HIV-tested and safe in eastern Rwanda.
Credit: UNICEF/2009/Frejd

Bamporeze is a non-governmental organization that started a community-based protection programme for children orphaned by AIDS in Rwanda soon after the genocide in 1995. Around 150,000 people live with HIV in Rwanda; 19,000 of them are children.

Clementine, 18, lives in eastern Rwanda and has been deeply affected by the AIDS epidemic.

“My parents died from an AIDS-related illness a few years ago,” she said, “but no one told us what they had or that we, too, should be tested.”

Clementine and her siblings were tested and now have a larger group they can rely on – an extended ‘family’ consisting of members of the community, mobilised by Bamporeze, who found out about Clementine and her siblings after their parents died.

Community support for orphans

While working with orphans, Bamporeze realised that foster families were not sustainable for all the orphans.

“There were just too many orphans,” said Bamporeze founder and coordinator Jeanne D’Arc Muhongayire. “So we decided to see how we could work with the whole community to try to rebuild children’s lives to create a feeling of a common responsibility for orphans.”

To create this larger family, Bamporeze, with support from UNICEF, helped orphaned children continue their education, learn skills and access information on reproductive health and life skills. Children in Clementine’s area also started their own agricultural cooperative to earn income to buy books, medicines and clothes. Bamporeze helped them find mentors who could be like parents to them.

A mentor to serve as parent

Clementine’s home in Rwanda; both of her parents died of AIDS-related illnesses several years ago.
Credit: UNICEF/2009/Frejd

“When Clementine and her siblings lost their parents, they were initially isolated from the other families,” said Patrick, who works with Bamporeze. “This happens to other children as well, and as their homes are spread out, it is hard to reach all of them to tell them that they are not alone.

“In fact,” Patrick continued, “I spend a lot of my time walking from one children’s household to another to ensure that all are registered with us and have access to the services. I then selected a mentor from the village – a person they trust and think can give them the support they need.”

“Our mentor comes to visit us every day,” said Clementine. “I talk to her about anything and she has introduced me to other children like us. It is good to know that we are not alone.”

Government bears responsibility

Bamporeze’s community-based programme for orphans has succeeded in registering every orphaned child with local authorities.

“This means that local government now also knows about these children and bears responsibility for their well-being,” said the Head of UNICEF Rwanda’s HIV and AIDS Section, Bernardine Mukakizima.

“Bamporeze has helped initiate a programme that serves as an example to other communities in this country,” she added. “We don’t have to wait for foster families or adoptions or even rely on them, if a community is mobilised and feels a sense of ownership for ‘its’ children, then orphaned children around this country will know that they are not alone.”