Battling HIV to Save Orphans

Catholic Relief Services helps approximately 650,000 orphans and vulnerable children around the world. Based in Arusha, Tanzania, Dr. Dorothy Brewster-Lee oversees several programs for children in six countries: Rwanda, Tanzania, Kenya, Haiti, Botswana and Zambia. Funded by CRS donors and the President's Emergency Plan for AIDS Relief, the programs provide support to children and families in which at least one parent has contracted or died from the disease. On a recent trip to CRS headquarters in Baltimore, the 30-year health veteran gave us an inside look at the challenges that these children face when their parents get sick or die.

Kai Hill:

What are the factors that have led to such a high and growing number of orphans in Africa?

Dorothy Brewster-Lee:

In sub-Saharan Africa, a large portion of HIV infections are found among married couples who have children. You have to also take into account that many of these couples didn't have access to antiretroviral drugs, which weren't readily available in parts of the world until 2005.

There's also the widespread problem of not having adequate numbers of people being tested for HIV, especially in the rural areas. The level of stigma and discrimination in a given community continues to play a part in whether a husband tells his wife or vice versa that he or she is infected. But if neither mother nor father is tested or treated, both parents are likely to die from AIDS, leaving the children to fend for themselves or be cared for by relatives.

Hill:

Has the availability of antiretroviral drugs helped parents live longer?

Brewster-Lee:

Many of the orphans we serve were orphans before treatment was available. However, given the influx of drug treatment, we've seen a significant increase of parents living longer, which is a major accomplishment. But we still face huge numbers of people who don't know they are positive, so the orphan population is expected to grow.

Also, most adults who have died of what we strongly believe was AIDS were not tested. Once they've died, few people know or reveal the true cause. This remains a challenge in places such as sub-Saharan Africa, where HIV and AIDS can be mistaken for common illnesses such as malaria, severe diarrheal disease or tuberculosis. Also, children often are not told the reason why their mother or father has fallen ill. So if parents are not treated, we have a case with a long history of illness that by all accounts is symptomatic of HIV and AIDS.

Solandjie Joseph, 7, waits her turn for the regular checkup she gets before receiving her pediatric antiretroviral drugs at the CRS-supported Esperance Hospital in northern Haiti. Photo by Rick D'Elia for CRS

For CRS, working to reduce stigma by educating communities is a first line of defense in that it removes barriers to testing and treatment. In many communities, stigma is not what it used to be. The fact that people can receive treatment and live longer has made people live more openly with HIV.

Hill:

Most children who are born HIV-positive or contract HIV in infancy die within the first five or so years of life if they are not treated. What kinds of challenges do you face in getting more children tested and treated?

Brewster-Lee:

Pediatric AIDS is a big problem because kids who may be HIV-positive are not being identified and treated. A major obstacle is the difficulty of making a diagnosis of HIV in babies under 18 months of age. The diagnosis is difficult because before 18 months of age, conventional and relatively inexpensive "rapid tests" used with adults will falsely identify HIV antibodies from the mother in the baby's blood. The only way to test babies under 18 months of age is through a very expensive, more complex test.

Another barrier remains with parents not wanting to know their children's status because if it is positive, they feel that it will expose the family to stigma and discrimination. Oftentimes children turn up chronically sick in school, where someone will direct them to get tested. With CRS' family-centered approach, we hope to be more rigorous with testing children whose parent or parents are on antiretroviral drugs.

Hill:

Can you describe what happens to a family once one of the parents fall ill?

Brewster-Lee:

The father normally gets sick first. Then Mom has the duty of taking care of Dad. Her attention to the kids naturally diminishes. The father is no longer bringing in income, and he can no longer work in the field or office. The family is spending all of its money now on medication and herbal remedies for Dad, so it's economically stressing. Then the mother's health starts to deteriorate, so the weight of taking care of the mother falls on the oldest girl child, who is also responsible for caring for her younger siblings.

Now the family becomes withdrawn from the community. The children's education is compromised. The ability to care for others in the household whose general health may need tending to becomes compromised. The house typically falls apart because there is no money to buy roofing or other materials.

After the mother and father die, children usually go to a relative—frequently an aunt, uncle or grandmother. Child-headed households, where the oldest child assumes the role of the parent, are rare compared to the number of children who have gone to live with relatives. If there is a good church, mosque or community group, these families are more readily identified and enrolled in programs.

Zambian Evelyn Ntambo lives with four of her own children as well as six grandchildren whom she has cared for since their parents died. Photo by David Snyder for CRS

But in the worst-case scenario, these families get picked up late. They may have gone for years without any type of outside support. For these kids, you will find them in a household with a dying parent. Everything has been sold in the house, which is leaking, perhaps exposed to the elements, and in some cases infested with rats or other rodents. At night, children are sleeping on floors and spending their days trying to find food and jobs instead of going to school.

Just think of the emotional and spiritual imprint this situation has on a child. Many of these young children experience more personal suffering and emotional deprivation before they reach age 10 than most adult Americans experience in a lifetime. Their lives quickly deteriorate. The mother who took them to Sunday school is no longer able to. They often question: What kind of God allows this suffering?

Hill:

Explain what happens once these families receive support from CRS and our partner programs.

Brewster-Lee:

Well, we don't want to just dump services on them. Our volunteers and community workers first assess the family's needs to determine where they might need support, whether it be shelter, education costs, testing, treatment, child protection, HIV prevention or ways to generate more income.

Once the children are met with services, they are back in school, doing better socially and academically. Young kids are tested and, if needed, put into pediatric HIV care. Overall, CRS' aim is to help these children meet their full potential. We meet their direct needs along with the needs of their households. That in turn helps make their community a better place to live. These children belong to the communities in which they live. CRS' primary aim is to equip families and communities to take care of them.

Kai T. Hill is an associate web producer for CRS. She works at the Baltimore headquarters.