When traveling to Fuyang, Anhui, China for work 12 years ago, Professor Kay Johnson- PATS co-founder- met a 12 year old girl named Nan Nan, who was HIV-positive and extremely sick. It was disheartening to learn that there were no medications for pediatric HIV/AIDS in China at that time (when they were available elsewhere in the world) and there was nothing the local CDC in China could do to help her. Like countless HIV-positive children before her in China, she would die. ‘You don’t just walk away from a very sick child’ Kay reflects. Trying to find help to treat Nan Nan, Kay rolled up her sleeves and extensively reached out to her network of doctors, friends, colleagues, and friends’ friends. One day, a colleague introduced Kay to AID for AIDS (AFA, https://aidforaids.org/), a nonprofit dedicated to improving the lives of people affected by HIV, headquartered in New York. Kay got an email from them saying they could help with pediatric medications for Nan Nan: “It’s not easy but we will try” she remembers them saying. AFA has high requirements before donating medications and they needed a doctor’s prescription and lab tests before they could send them out. It was a challenge to meet these requirements, but Kay was committed to giving Nan Nan a chance to survive. The first hurdle was that there was no pediatric AIDS doctor in Fuyang or any city close by who could write the required prescription. There was one doctor in Beijing who had been trained by Harvard doctors. On New Year’s Eve of 2004, when people traditionally gathered with families to celebrate the New Year over meals and toasts, the Director of PATS’ local partner AOS took Nan Nan on a quiet empty train and went to Beijing. Nan Nan was 13 years old then, but due to sickness, malnutrition and lack of care, she was so small she looked like a 7 or 8 year old. The doctor confirmed that Nan Nan had full blown AIDS and provided the prescription to AFA. Very soon AFA sent out the pediatric medication to Nan Nan. Kay recalls: “without intervention, she wouldn’t have survived that winter.” Not only did Nan Nan survive but she thrived. Thanks to life saving medication and the supports provided by the PATS program, her CD4 count increased until the HIV virus was undetectable and she was able to attend school, study painting and eventually marry. Today she is the proud mother of a toddler who is HIV-free! Though pediatric ARV medication is now available in China for HIV-positive children, changing the prescription could jeopardize the health of Nan Nan, whose body has responded so well to her imported drug regimen. Consequently Aid for AIDS has continued to faithfully send regular packages with the medication she needs to maintain control of her illness. PATS is extremely grateful to partners such as AID for AIDS who allow us to provide the medication needed by Nan Nan and others to not just survive but thrive.
For the last decade, PATS local partner AOS has brought many of the PATS children to Beijing each summer for "camp". It is a great opportunity for the children to see something outside of their small rural town and see important historical and cultural sites. The children look forward to this trip all year and it is the only opportunity most have to travel anywhere.
Many local university students volunteering with the Red Cross signed up to help with the summer camp and were on hand to engage with the children, serving as tour guides. The kids called them “GeGe” and “Jiejie” (Elder Brothers and Sisters) and had a very fun week in their company.
They visited the Beijing Zoo where they said hi to the pandas and the Science and Technology museum where they participated in some very cool hands-on scientific exhibits. They also took some art classes and toured many scenic and historical places in Beijing where they loved getting photos to bring back to show friends and family.
The highlight of the trip was meeting Yao Ming! When the kids first met Yao in person, they were so surprised that 'He was so tall!' Yao played basketball with the kids, and put some kids up on his shoulders so they could shoot baskets. They also met with Peng Liyuan (China’s 1st lady)- which was an incredible honor.
As you can imagine the kids had a blast on the trip and for a short time could focus on the fun of childhood rather than on the heavy and often difficult day-to-day existence they live back home. Thank you for your support that allows us to provide our kids not only with critical medical and educational support, but also from time-to-time with a chance to experience childhood.
Below are some group pictures. We hope you enjoy them!
PATS has been extremely fortunate to have Dr. Jessica Haberer on our Board of Directors since its inception. Dr. Haberer worked previously with the Clinton HIV/AIDS Initiative in China where she was a Clinical and Research Advisor to the Chinese Center for Disease Control. She was a leader in the initial rollout of pediatric ARVs across China, as well as the Clinton Pediatric HIV/AIDS Program. In this role she met several of the PATS children and supported their medical care. Jessica now splits her time between Massachusetts General Hospital and Harvard Medical School in Boston, USA where she continues her work in support of HIV-positive children and adults around the world.
Dr. Haberer has been key to supporting the PATS program. In the early years of PATS she provided medical expertise when we created our bilingual HIV education manual that would become an important go-to information source for our workers. She also reviewed and gave important input to a picture-based manual we put together for illiterate caretakers of HIV-positive children and she has ensured that all surveys and other program documents were medically accurate and ethically appropriate. Most importantly, for several years she has participated in conference calls with our staff in China, answering questions and concerns the workers have about specific children or their parents. These calls were translated by bilingual PATS volunteers and were followed up by e-mails as needed.
An example of questions that the workers recently asked Jessica include the following:
1. A child’s mom just changed to 2nd line medication and her platelet count has drastically decreased. So she switched back to first line drugs. Do you have any suggestions on how to proceed?
2. A child’s mom is on ARV meds and her blood cholesterol level is very high. So she is taking a lot of different medicine to control her cholesterol levels. Will that affect her ARV medication?
3. Many parents asked how come their kids have been taking their ARV meds for a long time, but their CD4 haven't risen very fast. Is there a reason for that? Do ARV meds and CD4 actually correlate?
Dr. Haberer has also been essential to providing advice to several children who were critically ill: one child developed cancer and another was hospitalized with a very low CD4 count and was in need of changing her ARV drugs which PATS supplies from the US. She provided real time advice about how the workers should work with local physicians to respond to these challenging situations. She gave them the support they needed to help families and their doctors make good decisions about their care. While PATS always works with local doctors and the Ministry of Health system, sometimes they do not have the expertise or the time to provide our workers or the PATS children with the one-on-one attention they need. Dr. Haberer has provided PATS workers, children and their families with an important supplement to the care they have available locally and the good health of many of our children and their families is a direct result of her medical support.