Pediatric Study Group

I am very grateful to have been given the opportunity to write about the Pediatric Working Group (PWG) which meets at the PWA Health Group. Even though there are some women who feel that there should not be pediatric issues in a women's treatment newsletter (for whatever reason), it must be acknowledged that the Pediatric Working Group evolved from the Women's Treatment Project (WTP) almost 2 years ago. As women in the WTP accessed current, albeit little, data on how the old/new medications affected them in their bodies, as opposed to a man's, many of the women with HIV+ kids wanted to access pediatric treatment data also. I was one of those women.

In the summer of 1995, my husband had tested positive for HIV after being hospitalized several times in a short six-month period. Shortly thereafter, I also tested positive. My children at the time were ages 20 months, 3 and 7. They tested the two youngest ones first and when my 3 year old tested HIV+, they tested my oldest daughter. As it turned out, my youngest child and oldest child were both negative. However, with Christina, the one who tested positive, the nightmare began. I was thrown into a world of drugs, doctors and terminology that still, to this day, overwhelms me, to say the least.

About a year after our diagnosis, I became involved with the Women's Treatment Project. Former Coordinator Lorna Gottesman became a very important resource in trying to get answers to my questions concerning pediatric information. When it became evident that this was a major undertaking since there was even less data on kids than women, the then Executive Director, Sally Cooper, and Lorna decided to start a pediatric study group. There was no formal structure designed for the group. It was composed of parents and caregivers of HIV+ kids as well as health care professionals. However, it became immediately apparent at the bi-monthly meetings that there was a lack of accessible pediatric data and we were all faced with treatment decisions for our kids. As we became known as the Pediatric Working Group, our informal discussions centered around treatment options. We visited St. Luke's Hospital a few times and met with Dr. Stephen Arpadi and Pat Cuff, a nutritionist who specializes in HIV in children. We were able to have informal, open discussions on how HIV affects our children, their body composition and the important role that nutrition plays.

Last December, many of us whose children were on IVIG (Intravenous immunoglobulin) therapy were told there was an IVIG shortage. IVIG is a treatment of antibodies to prevent common but potentially deadly infections for children with immuno-comprised systems. Since clinical trial data have shown that there is a medical benefit when IVIG is used with HIV+ children, now a standard of care, it was paramount that we investigate this alarming and potentially debilitating problem. Many of our meetings centered on this very serious issue, and some of us met with congressional representatives because of the serious implications it could have in the care of HIV+ children and their communities. Although the shortage has been alleviated temporarily, it is anticipated that there may be another IVIG shortage if the FDA does not take specific action with the manufacturers and would-be manufacturers of the product. Part of our agenda over the next few months will be to continue advocacy around this issue, specifically aimed at the FDA so this will not happen again.

This past summer I was honored to attend the Geneva Conference and have a poster presentation on the PWG accepted for exhibition. When a poster is displayed, you have to stand there at certain hours to answer questions. For me, this was a memorable experience because I had the chance to speak with people from other countries. There were a few people who wanted to use the model of the PWG in their communities in order to access information for parents/caregivers of HIV+ children. Children's Hospital in Washington, DC also contacted me and I gave them tips on how to start their own study group.

One of the important components of a successful group is to have one member act as a clinical and technical resource. This person can help translate medical terminology into plain language and help perform literature and internet searches as needed. We have a registered nurse in our group (John Falkenberg) who acts as this resource. Although he is not a parent, his tireless commitment to the PWG has proven to be an extraordinary asset to the evolution of this very special and much needed program.

The PWG meets the 2nd and 4th Friday of each month, 11:00 am - 12:30 pm at the PWA Health Group. On the 2nd Friday, a guest speaker is scheduled; on the 4th Friday, we have general discussions and a recap of the previous speaker's topic. All are welcome. Please contact Susan or Jessie at the PWA Health Group for more information.

Copyright ©1999 by People With AIDS Working for Health, Inc. Non-commercial reproduction is strongly encouraged.