April 7-9, 2011
The flight from LAX to Guangzhou was 15 hours or so. It was long and felt a little frightening, heading to a country vastly different from my own. My very limited knowledge of China has been acquired from tidbits on the news. I was aware that for the last 20 years or more, China has practiced family planning as a basic policy. This family planning policy advocates each couple to have one child in accordance with the family planning policy. However, any couple facing genuine difficulties, mainly those in rural areas whose first child is a girl, can apply for the birth of second child by going through the necessary formalities. First is the policy on imposing a social levy. "Does this mean that a couple can have more children if they have enough money?" some people ask. The answer is no. By implementing a social levy, the government will necessarily restrict those people who run counter to state laws and regulations and give birth to more children. Second, the Population and Family Planning law clearly stipulates that those citizens who give birth to more children than permitted by regulation will have to face the consequences of legally imposed economic penalties.
The People's Republic of China is the world's second largest economy after the United States. It is the world's fastest-growing major economy, with average growth rates of 10% for the past 30 years. China is also the largest exporter and second largest importer of goods in the world. China became the world's top manufacturer in 2011, surpassing the United States. For 2010, inbound foreign direct investment into China surpassed $100 billion for the first time, and investment overseas by Chinese companies in non-financial sectors totaled $59 billion. The provinces in the coastal regions of China tend to be more industrialized, while regions in the hinterland are less developed. As China's economic importance has grown, so has attention to the structure and health of that economy.
While China considers their family planning policy a success, significantly controlling their population, there are nearly two billion people living in the People’s Republic of China. If you do the math, there are more than 40,000 boys with Duchenne. There is no infrastructure for accurate diagnosis, genetic counseling, or care (let alone optimal care).
Yin Haifang, PhD, one of the organizers of the conference, worked in the UK on exon skipping in the laboratory of Matthew Wood. In conversations with colleagues, she talked about China, about life with Duchenne in China, about the need for China to join the global Duchenne community. While families in China do not have access to Google and are unable to join Facebook, they would be able to access Duchenne muscular dystrophy related websites. Yin and Volker Staub from TREAT-NMD began to plan this first meeting.
I was invited to China to talk about the patient voice in research, introducing the concept of parents as partners in care and research. While I am typically not at a loss for words, I just did not know where to start. How do you say to physicians that families are equal partners, that they hold the highest stakes, that they know their child better than any physician will ever know their child, and that they are the first to see change –positive or negative. How do you change minds?
It is simply not easy. There are language and cultural differences for sure, but these differences cannot be the barriers. At the end of the day, we are all human and we love our children, our friends. And isn’t ending Duchenne our common, shared goal.
The meeting went well. The families, like all families at these conferences, sat for three days, hanging on every word. On Saturday, the designated family day, the families seemed to relax some, become more comfortable, and more willing to ask questions. They surrounded the speakers, asking for explanation, asking for information, asking for help. Just before closing on Saturday, a representative of the Chinese Parent Organization spoke, listing their needs: newborn screening, molecular diagnosis, genetic counseling, optimal care, and access to trials, treatments, and other families.
This was a big, brave step for China. The families are now aware of UPPMD and PPMD. They now have the Care Considerations Family Friendly Guide in Chinese. Professor Zhang Cheng promised these families he would help them identify experts, develop infrastructure, and promote research. I’m keeping him at his word.