Site Visits

I spent the week traveling with my team and a Pediatric AIDS expert (Herb) from the U.S. to various sites doing patient consultation. So far, we have been to two different provinces – Guangxi and Anhui. Guangxi is a region with rising HIV infection rates since it is along the drug route and intravenous drug use is widespread along the border with Myanmar. Anhui is a Central China province (the area of China where villagers sold their blood for money) that also happens to be one of the poorest in China. To say the experience has been eye-opening would be an understatement. Learning about how doctors treat HIV patients in resource-limited situations and watching them in action has been an incredible experience. The week has been an emotional rollercoaster though. I spent quite a bit of time playing the role of social worker, comforting care-takers (parents, grandparents and other relatives) and children alike, trying to give them hope and bring a smile to their faces. I have heard heartbreaking stories about how these people got HIV, and seen so many babies and precocious kids that have suffered way too much in their short lives.

The Chinese government provides anti-retroviral (ARV) drugs to all Chinese HIV+ patients free of charge, assuming the patients can be found. All the pediatric formulations are donated to China by the Clinton Foundation, courtesy of a grant from UNITAID. The goal is to get 100,000 children on treatment worldwide by the end of the year. Even in the United States, not everyone has access to free ARV drugs, so I was pleasantly surprised. But as I have learned, access to free drugs does not necessarily lead to a successful patient treatment program, especially when it comes to children. China currently has less than a thousand children on treatment.

Admittedly, I knew almost nothing about HIV/AIDS when I accepted the position of Pediatric HIV/AIDS Program Officer, and I did not know a whole lot more when I arrived in Beijing a month ago to start work. I am still developing my knowledge, reading as much as I can about the disease and its treatment, including the WHO and UNICEF guidelines. After seeing dozens of HIV+ children, many just babies, I asked Herb what the average life expectancy of these children is, and his response was “what’s the life expectancy of an average Chinese person?” Advances in medical science has yielded a number of drugs, with even better ones coming down the pipeline, that makes it possible for HIV+ people to live full lives, something that was unimaginable even a decade ago. But much of this depends on drug adherence, and proper storage and administration of the drugs. These affected children depend on the adults in their life to help them with all three.

However, for every child who has a caring care-taker, there is an orphan or a child who has been abandoned by the adults in his/her life. Two days ago, I met a child who had been left at a train station. Another child had no one to take care of him – his father was a gambler, his mother had died of the disease, his grandmother just developed cancer and his stepmother wanted to leave him at an orphanage (but orphanages won’t take children who are HIV+ and have a living parent). Luckily for the first child, they managed to find him a foster home, where an old grandmother has done an extremely good job of caring for 4 HIV+ children. All of these kids were doing well, appeared healthy and were as happy as can be. Their drugs have successfully kept their disease at bay and under control. But the second boy looked forlorn (who can blame him??), was dirty, has no one to give him his drugs on a regular basis and receives absolutely no adult love or attention. Even his doctor did not bother to show up for the consultation. As a result of his poor drug adherence, he is likely to develop resistance to his drugs very quickly and the virus will have the opportunity to take over and, in the worse-case scenario, kill him. I wanted to cry. This is just one example, and of course, the problem is not limited to China. The stigma these children face is huge regardless of location. It is truly heartbreaking.

Poor adherence has led to serious drug resistance in many of the children. We worked until 1am last night trying to figure out what 2nd line drugs we can potentially give a group of children with multiple drug resistance. After listening to the experts talk and helping with translations, I now have a pretty good knowledge of the 1s and 2nd line drugs available. There are fewer drugs available to children than adults and several of the children have few options left. While my hope is that all these children will hang in there and pull through, some of them are in really bad shape, and the future does not look promising for them.

Even in cases where the parents care, many of them don’t have a refrigerator to properly store the medicine. One of the drugs, d4T suspension, requires refrigeration, but in Guangxi (in Southern China), where the temperatures can easily exceed 100 degrees in the summer, only one family we saw at the clinic owned a refrigerator at home (we saw approximately 3 dozen there). We are trying to donate fixed dose combination (FDC) drugs in the future, that combine the 3-drug cocktails into one small pill which would not require refrigeration. By making it easier to take the drugs and to store it, we hope to improve adherence and give more children the opportunity to live to adulthood. The suspensions are also supposed to taste terrible (they make some people drink it to understand why it is difficult to get small children to take their medicine, but I have not had to do that), a problem the FDCs will also resolve.

Many of the children were also malnourished since they come from poor farming families that still reside in rural villages far away from urban centers. Some of the children had to travel 9 hours just to get to the provincial clinic (they normally see their local doctors – but their training and experience is likely more limited). We are looking into whether Chinese children will like “plumpinut” – a peanut butter-like high-calorie nutritional supplement for kids. I had given out some chocolate to the kids during the consultations – for many of them, it was the first time they had tasted chocolate – and they loved it. Hopefully the kids will like plumpinut too so we can donate some to China to help combat malnutrition.

I’ve been spending a lot of time thinking about why the stigma associated with HIV/AIDS is so great. HIV/AIDS children are not allowed in orphanages and many hospitals won’t admit them into care. Some restaurants won’t let them eat there. There are other deadly diseases but people don’t seem to fear it as much. Is it just fear of getting the disease? Is it ignorance about how it is spread? We had to do one consultation secretly at night – 5 orphans with HIV live in a foster home in an apartment building where none of their neighbors knew about their condition. They will get kicked out if anyone found out.

One of the kids I just saw today has a cleft palate, and I am hoping that I can either find an organization to give her cleft palate surgery, or raise enough money to get her the surgery for free. If anyone knows of an organization or wants to help, please let me know.

I have another week of site visits. We’re going to Yunnan Province next, and then heading to help Sichuan Province with their ARV Training for local doctors. We’ve worked throughout the weekend and traveling from site to site has been exhausting, but truly, truly rewarding.