Sharon F. Terry
Sharon Terry, president and CEO of the Genetic Alliance, weighs in from Beijing.
GEN’s China Dispatches are issued by Sharon F. Terry, president and CEO of the Genetic Alliance, a network of more than 10,000 organizations, including 1,200 disease-advocacy organizations, that enables individuals, families, and communities to reclaim their health and become full participants in translational research and services. A pioneer of consumer participation in genetics research, services, and policy, Sharon F. Terry serves a leadership role not only at the Genetic Alliance, but also at the Genetic Alliance Registry and Biobank and at PXE International, a research advocacy organization for the genetic condition pseudoxanthoma elasticum (PXE).
We are visiting China to continue several collaborations in biomedical research that we began last year. There are four of us traveling together: Jouni Uitto, Qiujie JIang, Patrick Terry, and myself. Jouni Uitto, M.D., Ph.D., is the chair of the department of dermatology and cutaneous biology at Jefferson Medical College. We collaborate with him for research on pseudoxanthoma elasticum (PXE), the condition that affects our children. Qiujie JIang, M.D., Ph.D., also researches PXE and is an associate professor in Jouni’s department. We will all be giving multiple talks, opening two centers (one for the Genetic Alliance and one for PXE International) and meeting with dozens of researchers over our seven days.
We begin our week in China by visiting the Beijing Children’s Hospital (BCH), a short walk from our hotel near the west side of the 2nd ring road. The hospital, founded 71 years ago, is the largest pediatric hospital in China. Sprawling over three buildings, it encompasses three million square meters, and serves more than three million children a year.
As we turn the corner into the covered courtyard where outpatient registration takes place, we encounter about 500 people standing in 12 lines. This set of lines is the first set of dozens that an individual encounters on their way through the process. Our host, Zhe Xu, an associate chief doctor in the hospital, tells us that about 70% of these children and their families come from outside Beijing, sometimes traveling a long distance. A colorful board above the crowd announces the specialists available that day.
We turn another corner into the entrance of the hospital proper, and thread our way through hundreds of people; it feels like Times Square when the theaters let out. Everywhere we look, there are babies and children, some crying, some laughing. There are 8,000 outpatients here today, and parents and grandparents—doubling, tripling, and quadrupling the number of people—accompany them. The hospital has 1,000 beds—all full. In the summer, during the “peak season,” 15,000 children are treated as outpatients each day.
Zhe brings us to a department that serves children with severe skin diseases. Again we encounter lines, and bypass four different queues (including long and well-managed lines for the elevators) to visit the wards where these children are being treated. They are simply little kids, sitting on small and colorful plastic stools, watching cartoons in their hospital pajamas. They shyly turn to look at us and are soon more interested in us than their TV show. Each doctor in this department sees more than 120 patients a day. The doctor and an assistant stay in one room, and the patients come to them, again standing in line until it is their turn. The doctor makes a decision about what treatment the patient needs, and then sends them to another line to wait for a biopsy, surgery, laser therapy, and the like.
We meet Yongli Guo, M.D., Ph.D., the director of the biobank at the BCH. She enthusiastically describes their biobank. It has just begun and is collecting samples from children with solid tumors, and blood from children with leukemia and genetic conditions. I am very interested in her work, and we strike up an animated dialogue. The world becomes much smaller when she describes her work in the United States at the FDA’s Center for Devices and Radiological Health with Liz Mansfield, the director of personalized medicine. I am a founder of the Genetic Alliance Registry and Biobank, and so I am very interested in this biobank, and more importantly, in establishing a collaboration with Dr. Guo.
We visit the biobank that, in anticipation of ramping up more than 100% per year, is filled with new freezers and liquid nitrogen storage containers. They have 30,000 samples in this, their second year, and they plan on adding about 100,000 samples a year. We determine that U.S. disease advocacy organizations would be very interested in collaborating with them. Here in China, with the pediatric hospitals collaborating fairly well, and such an enormous number of individuals, it is possible to discover large cohorts quickly.
Our afternoon was spent in a completely different environment: the Peking University First Hospital. This gleaming and modern building is a year old and has very modern clinics and labs. We visit the VIP clinic. A visit here costs $60, and entitles the patient to a 30-minute consult with a more senior clinician than the regular clinic. A visit there is fifty cents and five minutes long. The people in the regular clinic sit in rows like those at the motor vehicle department, and wait until a board lights up and announces their name and which exam room they should visit. The people here seem happy and are very interested in us (we have seen no other westerners all day) as we are led by our guide to meet some of the clinicians. Each exam room door has an electronic screen next to it with the patient’s and the doctor’s names on it. So much for patient privacy! This hospital also serves about 8,000 people per day.
A tour of the state-of-the-art labs follows. Discussion with Yong Yang, a professor of genetics, reveals that grant proposals to the Chinese government are successful 50% of the time, and the percentage is increasing due to a strong economy. He also describes the magnitude of these grants: they are usually about $10,000 because the researchers are asking only for laboratory research expenses. Their salaries, and all overhead, are covered by the government.
The day ends with yet another sumptuous and colorful meal. Toasting collaboration and further exploration of areas of commonality, we are mindful of the generosity of our hosts and delighted with the prospects of further collaboration.
Be sure to check out the follow-up to this article, “China Dispatch: Rare Disease Collaborations“.