Nancy Calles, on caring for pediatric HIV patients

By Carol Lindsay, RN
April 29, 2002

How did you become involved in caring for children with HIV?

It just sort of happened. I was working at the county hospital and someone told me there was a job at Texas Children's working with HIV children. I thought it sounded interesting. I applied for the job and I have been here for 12 years.

What parts of your program are you proudest of?

Being able to provide antiretroviral medications to children in Romania. Antiretroviral medications are used to stop or slow the replication of HIV in the body. Antirertrovirals are grouped into three groups, each one focusing on a different stage of HIV replication.

The groups include nucleoside reverse transcriptase inhibitors, protease inhibitors and non-nucleoside reverse transcriptase inhibitors. Combination therapy, the use of three or more antiretroviral medications together-also known as HAART or highly active antitretroviral therapy-is the standard of care for HIV-infected adults and children. The idea behind using combinations of anti-HIV medications is that the stronger the therapy and the more ways HIV is attacked by different drugs, the less likely it is that the virus will become resistant to treatment.

We started treating children in Romania in 1996. At that time, the children in the United States were getting good medications, but Romanian children did not receive any medication for HIV. We've been going back to Romania at least once a month since then, and we provide nursing and health professional education. We have a clinic established there, where we work with a physician to treat more than 1,000 children.

What are the greatest advances you've seen in the last 10 years in pediatric HIV treatment?
The development of highly active antiretroviral therapies in formulations that children can take. We also are scheduling these medications in ways that are appropriate for children.

What are your hopes for these children during the next 10 years?

I hope that I can see a lot of the children I started seeing 12 years ago graduate from college. I hope they have to take medications only once a day and that HIV is more widely accepted throughout the world.

What are the greatest challenges for HIV-infected children in the United States and other countries?

Taking medications. They have to take at least three medications; this involves taking as many as 12 pills two or three times a day.

Children must not forget to take their medications, but this is especially hard when they have other priorities, such as playing with their friends.

Children in Texas are lucky they can get antiretroviral therapy. There are programs that provide funding, and we have never had to turn a child away.

In Romania, there is a problem with access to care. They provide some medications but not as many as are available in the United States. There are fewpeople in Romania trained to care for people with HIV. Most countries are not providing any medications to children. The children are just trying to stay healthy without medications. In Romania, we work in conjunction with the government to offer medication.

In South Africa, we were the first ones to go into the country and offer medications, but now the government is starting to provide medications to children and adults for free if they qualify, based on income.

What social challenges do HIV-infected children face?

There is a stigma. Even in the United States, parents don't tell their children that they are HIV-positive. They are afraid they will tell other children and that people won't want to play with their kids or invite them into their homes.

I think people in the United States have coped better because they have dealt with the disease longer. In Romania and Africa, most people don't tell anyone except their family members that their child is infected. In Africa, the stigma is the worst. People can be thrown out of their home and children are abandoned and live on the street.

What challenges do nurses face?

We are educating health care workers about HIV and how you can and cannot get it.

In Africa, 80 percent of people in hospitals have HIV, and nurses don't want to care for the patients because they are afraid they will get HIV. Many patients in hospitals are neglected because nurses are scared. There is a shortage of nurses in Africa partly because nurses are dying of HIV, too. Nurses do not tell anyone that they have HIV because they are ostracized. Nursing is not a job that pays well in Africa, so the shortage continues.

What are the goals of your program?

Education and medication. We need to provide medication to women who are pregnant and educate providers to care for women who are pregnant.

In Africa, there are programs for perinatal counseling, but most women do not want to know if they are positive.

HIV treatment has come a long way, especially in the United States, but pediatric HIV is still out there. We need to continue to work to prevent the spread of pediatric HIV and promote the acceptance of those with HIV.