Raising Africa's Orphans

Seeding a "garden of hope" for children across the continent

By Noerine Kaleeba, UNAIDS

I come from an oral culture. Most of what I know today was passed on to me by elders. As a young girl growing up in a remote village in Uganda, I heard and told many stories. Now I work with the United Nations, and I still tell stories.

There are stark differences between the stories of my youth and those of today. The stories in those days were mostly legends or fairy tales. The stories I hear and tell now are real life stories of human suffering and human compassion, mixed with the successes and failures of the human race in addressing the most pressing problems we face today. The stories I tell are the story of my life, the story of my family, the story of my African people, and the story of our struggles against HIV/AIDS.

It is clear that today we need a continent-wide plan for dealing with HIV/AIDS. African nations need to approach the epidemic as an issue determining their fate. And as children are the future, we must care for those whose lives have been ravaged by the disease.

The first place to direct support is HIV/AIDS-affected communities. To me, there is no doubt that this is where the most effective initiatives are today. In many communities, HIV/AIDS-affected people are organizing and going door to door educating others on prevention and positive living. Some are creating "orphan villages" so children can get treatment and care. I call these grassroots efforts "gardens of hope". We can seed, grow, and interconnect these gardens of hope to create a huge Shamba (a giant garden) for children across the continent.

When AIDS Came to My House

Eighteen years ago, AIDS came to my house. My husband Christopher was diagnosed with the disease. Christopher died within a year. While my family cared for him, we struggled to understand what was happening to us.

Since our community traditionally grieves together, we were totally unprepared for the rejection of our friends. I also felt betrayed and angry by the negative attitudes of health care workers. I noticed other families who abandoned their ill loved-ones for fear of catching the disease.

I started to understand that the scarcity of information surrounding HIV/AIDS was creating panic. This panic, combined with the two taboo subjects of sex and death, resulted in a very profound stigma.

I found other persons and families with AIDS and formed a support group. We named this support group The AIDS Support Organization (TASO). We wanted the word AIDS in there to try and break the silence of this disease.

We began by offering each other support, praying and crying together. As we gained confidence, we began to organize counseling for infected people and their families. TASO is now the largest grassroots organization providing HIV/AIDS services in Uganda and I can say with confidence that it has made a significant contribution to our country's success in curbing the spread of HIV. In Uganda today, young people living with HIV/AIDS are the most powerful AIDS educators in their communities. They are able to do this only because our community accepts and encourages them.

Even during the early days, it was evident to me that HIV/AIDS was having a profound impact on children. Every single one of our early clients was a parent to very young children.

Children and the Future of Africa

Today we know that African children infected and affected by HIV/AIDS are the ultimate developmental nightmare for a continent grappling with major socio-economic problems.

According to UNAIDS, every day around the world, 2,000 infants contract HIV through their mothers—95% of these infants are Africans. Every day, 6,000 children lose one or both parents to AIDS—more than 90% of these children are Africans. Every day, 1600 children die of AIDS—90% of these children are Africans. Today, a child in Southern Africa has a 50% chance of dying from AIDS. Today in Africa, 95% of pregnant mothers do not have access to health programs that can significantly reduce the incidence of mother-to-child transmission of HIV.

The worst is yet to come. According to UNAIDS, UNICEF, and USAID, by 2010 at least 20 million AIDS orphans will live in Africa.

Until then, large numbers of children orphaned by AIDS will become young adults. Whether these children are socialized, educated, clothed, or fed, they will assume their role in the society.

Twenty million uneducated, street-hardened, weather-beaten, and ultimately bitter African children will present formidable challenges to our continent and the world.

Current Efforts

There are no serious, continent-wide, comprehensive, multisectoral policies or programs directed at children infected and affected by HIV/AIDS, nor am I aware of any integrated and comprehensive corporate or civil society efforts. I am, however, acutely aware of heroic efforts by small-scale community-based organizations to provide basic support for AIDS orphans in every country in Africa.

There are some focused efforts by foundations like the Bill and Melinda Gates Foundation to support child-specific initiatives. The Children's Investment Fund is another recent innovative effort to focus support of children's initiatives on AIDS orphans in selected African countries. Faith-based organizations have also spearheaded efforts in many countries; international agencies and foundations are also addressing pockets of the AIDS orphan problem in Africa.

However, action needs to match the scale and duration of the pandemic. Currently, most initiatives are limited in scope and coverage, and in no country do the collective responses reach more than a fraction of the orphans and other children made vulnerable by HIV/AIDS.

A Way Forward

We have no roadmaps to rely on; we have to pioneer new ones.

I believe that the African Union, the Economic Commission for Africa, and the African Development Bank should, in conjunction with other international partners, develop a comprehensive continent-wide blueprint for dealing with children infected and affected by HIV/AIDS. This blueprint, while recognizing distinct local and national issues, should set guidelines and parameters for scaled-up remedial efforts. This blueprint should also set guidelines for regional initiatives, for sharing expertise across national boundaries, and for creating opportunities for communities to share lessons learned. This collaboration would put much-needed "political muscle" behind children's care as a top priority for the coordination and implementation of local and global efforts.

Such a plan needs to focus on the following:

Keep parents alive through treatment.
Access to HIV/AIDS treatment for parents, especially mothers, is vital. If we can delay death even for a few years, many children can be raised. No initiative, however elaborate, can replace a parent.

External interventions by governments, international organizations, NGOs, religious bodies, and others will only have significant, sustainable impact if they strengthen the capacities of affected families and communities to protect and care for vulnerable children.

Support, strengthen, and link community-based groups.
Grassroots groups have made incredible efforts to identify extremely vulnerable children, monitor their individual situations, respond with local resources to needs, and secure small amounts of funding or material support for efficient use. Groups in Uganda, Zambia, and South Africa, such as Action for Children Affected by AIDS, provide excellent models. The Children in Distress Network (CINDI) in Kwa-Zulu Natal has created a network of over 30 government and non-government agencies seeking to effectively respond to the growing numbers of children affected by HIV/AIDS in the region.

Some of these groups are bringing together the elderly, widows, and orphans to form communities of care complete with micro-enterprises and education.

The problem with such efforts is that each generally reaches only a few children in a very limited geographic area. The programmatic challenge is to develop ways to systematically mobilize such responses on a large scale and to help communities sustain them over time.

Stop HIV transmission through aggressive and empowering communication campaigns.
A proactive media will "make or break" our efforts to stem the crisis, particularly by de-stigmatizing HIV/AIDS, promoting health information, and encouraging partnership with affected communities. Today most media sources are not adequately sensitized. Either they avoid the topic or they still use passive language like "AIDS sufferers" and "AIDS victims." These people are not lying down waiting to be rescued! They are leading the charge in every country, against all odds.

Strengthen women's rights.
When women are raped, they cannot protect themselves against HIV/AIDS. Many marriages are death traps because husbands have sex outside of their relationship. In many places in Africa, women cannot inherit property, so when a husband dies, his wife and children end up on the street. Also, due to their low status in society, women have less access to treatment when they should be given priority, especially mothers. Pregnant women in particular should have access to antiretroviral therapy, as it can cut maternal transmission in half.

The primary path to strengthening women's rights is through education—for a woman is more likely to demand her rights if she is aware of them. I know for a fact that if I hadn't gotten an education, my own story would be very different.

What Can Individuals Do?

Use our voices and our finances. People outside Africa, especially in wealthy and influential countries, can make a huge difference.

Since the U.S. is a global leader, its citizens can help their country lead by example. Although the U.S. is increasing its financial assistance, more can be done. For example, the U.S. administration's strong promotion of only the A and B in the ABC strategy for preventing transmission ("abstain, be faithful, use a condom") sends a mixed message. In Uganda, the success of the program was due to all three elements, including C. But even this is incomplete because it does not address the spread of HIV through sexual violence or within marriage. The entire ABC strategy and the strengthening of women's rights and education are all needed simultaneously.

The most immediate and practical way to achieve these goals is through financial support. We need to find ways to fast-track small amounts of seed funding to numerous community groups, which will make an immediate difference. By financing these small groups, we will truly grow the children's "garden." My organization, TASO, is a shining example. We started from humble beginnings and the organization has now proven itself as a strong force against the spread of HIV/AIDS in my country.

Individuals can also directly sponsor children's education and care. Today I sponsor the education of 43 children. The wonderful thing about children is that they grow! When you see a child graduate, you feel unspeakable joy.

Our coming together to face the AIDS/HIV pandemic is not about gloom and despair; it is about hope based on our collective efforts. We are here to create and strengthen our networks and support systems; we are here to give and gain from each other a renewed sense of hope and encouragement.

By Noerine Kaleeba

A mother of five daughters and grandmother to three little boys and one little girl, Ms. Kaleeba is a charismatic leader and activist totally committed to the vision of a world without AIDS through interventions that put people and communities first.

Ms. Kaleeba has been awarded several international awards for her national and global anti-AIDS efforts. In 1987, she set up a support group that blossomed into a vibrant organization, The AIDS Support Organization (TASO Uganda), to provide care, support, and counseling, and to mobilize communities and neighborhood care for people with HIV/AIDS and their families. Based on the concept of positive living, TASO was one of the very first community responses to AIDS in Africa and is one of the leading examples in AIDS care and support, as well as community education on prevention in resource-limited settings. Ms. Kaleeba currently works as a program development adviser, Africa, for the Joint United Nations Program on HIV/AIDS (UNAIDS) and is based at their secretariat in Geneva.