written by: Jennifer Sloniger

What to do for World AIDS Day?

The question had been posed to the Project HOPEFUL team and we were brainstorming. I took the morning to consider some options. Later that day, when I submitted a proposal for creating a World AIDS Day educational initiative I hardly knew what I was getting us into.

The idea for the Truth Pandemic Campaign couldn’t have come at a more hectic time for Project HOPEFUL as the People magazine article was about to release and the whole team was rushing to launch a new and improved website. (www.projecthopeful.org) Everyone was already firing on all cylinders; could we really accomplish everything required in less than two months?

As the pressure of trying to arrange all the details mounted I began to wonder if I hadn’t created more trouble for Project HOPEFUL than it was worth. I knew the concept was an answer to my prayers over what more could be done to help raise awareness about HIV/AIDS this year, but doubt was seeping in. Was this campaign a giant distraction during a crucial expansion for Project HOPEFUL? Was it too much to handle right now?

Then, my HIV+ son took a nasty fall.*cringe* He bit through his tongue and his lip (how he accomplished both at the same time still baffles us). And, there was blood. LOTS of it.

The blood spill wasn’t a big deal. We practice universal precautions in this home and know there has never been a case of transmission in a normal family living situation. ( Bleeding DOES happen in normal families.) However, knowing our son was in serious pain made dealing with his injury difficult for us. Needless to say, we took take a trip to our local children’s hospital emergency room that day.

We chose to drive to an emergency department at a hospital that boasts a quiet, fairly anonymous clinic (except for a page on the website people don’t know it exists in the hospital. Even the people at the front desk didn’t know how to direct us to the clinic upon our first visit there) where HIV+ pediatric patients receive loving comprehensive care from a dedicated team of specialists. This is the same pediatric HIV clinic where our son’s treatment is managed.

So, when we arrived for the first time at the hospital’s Emergency Department our family felt confident we’d receive excellent care. And we did. The staff in the ED treated our son with respect and efficiency. The main concern for our family was whether or not our son would be able to take his oral medications. When it was determined he’d have to stay overnight so he could be monitored the ED staff fondly sent us off to a room on the fourth floor with smiles, waves, and many well wishes.

It was when we got to our room that circumstances changed for my son. During his overnight in the hospital two nurses behaved toward him in a very unprofessional manner. I desire not to convey the details of our experience because I would never want to tarnish the reputation of the fine facility where we CHOOSE to take our children to receive care. These two nurses are not representative of the hospital as a whole. But, what I want to highlight is that after our experiences overnight in the hospital I felt confirmation that the Truth Pandemic WAS indeed very necessary. I was struck by experience that stigma exists even in the most surprising places and can creep up at a moment’s notice.

The statistic* which had first captured my attention – levels of knowledge about HIV/AIDS have not increased in the US since 1987 – was played out right before my very eyes by nurses stuck in a time warp. Any doubts I had about the timing of and need for the Truth Pandemic Campaign had vanished.

Deep sadness washed over me as I considered the little anonymous clinic; the place where parents quietly bring their children for state of the art treatment. The place where they strongly warn families to consider the risks of  disclosing their child’s HIV+ status so as to avoid facing stigma and discrimination at school, in their neighborhoods, or beyond. This little clinic of wonders with no sign, filled with the most wonderful staff no one knows about and tucked into an inconspicuous corner of an amazing facility. The same clinic that rallied to our side to deal with the wayward nurses and help retrain and educate the entire staff of the fourth floor.

Why should the clinic be forced to be so secretive, almost as if shrouded in shame? Why the need for such anonymity? Because clinics can’t deal with social stigma for families.

Families have to be willing to stand in the face of a lot of nastiness to disclose their status. After all, it’s their children who suffer. It is the children with HIV who are demeaned, intimidated, insulted, and abused. No one can make the choice for them. They have to be willing to step out.

You and I can make it easier, though. We can make sure those families don’t stand alone by stepping out with them. We can help combat stigma through education as well. And in so doing we will lighten the load carried by people who are open about their HIV+ status.

I believe in the purpose of the Truth Pandemic Campaign more than ever now! I’ve witnessed the power to change people’s perceptions through education. The Truth Pandemic video offers children (some HIV positive and others negative) themselves an opportunity to be a voice for their many peers who cannot be open about their HIV+ status.

Leading up to World AIDS Day the Project HOPEFUL Blog will be featuring a few stories of families and children who have been affected by stigma. Read for yourself why education is so important! Then, share the facts. Forward the Truth Pandemic video to at least 5 of your friends.

The children THANK YOU!

*Kaiser Family Foundation
2009 Survey of Americans on HIV/AIDS:
Summary of Findings on the Domestic Epidemic