By Seanan Fong
The first thing that strikes you when you see Peng Peng is the apparent size of his cranium – unlike healthy babies his age, who are blessed with thick layers of fat, Peng Peng’s gaunt cheeks let his cranium loom large in comparison. At eleven months old, he weighs only eight kilograms—half the weight expected for his age.
“He is still wearing the same shoes as when he was 5 months old,” his grandmother remarks. And she is worried that he hasn’t started crawling.
The two sit quietly by the window of the quiet hospital room—they are anxiously awaiting surgery. Peng Peng is one of thousands born every year with a congenital heart defect in Gansu province, China, and now, he is one of the few who to find treatment in the province’s capital, Lanzhou. His case—a hopeful exception to the rule—provides a glimpse into the complex public health challenge in treating congenital heart disease in rural China. The combination of a prevalent disease with high barriers to access has produced a massive challenge that is only beginning to be addressed.
Caused by diverse and difficult to identify factors, including both genetics and environment, congenital heart defects come in many forms and levels of severity. Peng Peng has two of the most common forms—a hole in the wall between his heart’s two atriums, and another hole between his ventricles.
As a result of these holes, his heart struggles to provide the normal blood flow that his body needs. Because his heart works so hard, yet can only deliver minimal amounts nutrients and oxygen to the rest of his body, his growth is stunted and his energ
y is low. His legs feel like bags of water, swollen from the inefficient pumping of his heart.
There are many more like Peng Peng. In Gansu province, where Peng Peng lives, as many as one in 125 children may be born with congenital heart disease (.8%), according to Gao Bingren at Lanzhou University’s Second Hospital. Many of these children die early in life, so between ages 2 to 19, Gao states that approximately one in every 175 children survives with congenital heart disease (.57%). That leaves thousands of children in the province with heart defects.
The incidence of the disease alone is not itself too remarkable, however. The .8% estimated incidence in Gansu is roughly even with the incidence of congenital heart disease in the U.S. Moreover, well-established open-heart surgical operations can treat most forms of congenital heart disease; if caught in time, patients usually recover fully and do not have any long-term health problems. In Gansu’s capital, Lanzhou, several medical facilities have the infrastructure and expertise to carry out these treatments, and in fact, most patients with a defect are diagnosed soon after birth.
Nevertheless, treatment for congenital heart disease lags far behind what the province demands, forming the crux of the public health challenge. In 2009, no more than 2,000 children received treatment in all of Gansu province, according to Gao. Ten years ago the situation was even worse: in 2000, no more than 1,000 children received treatment in all of Gansu. Though the province has begun to be able to provide the needed treatment due to recent advances in city hospitals, Gansu is still far from meeting the needs of all the children in the province with the disease. Given that treatment exists, why are so many children missing the opportunity to lead healthier, productive lives? The problem lies in access: the socioeco
nomic barriers standing between a sick child and ready treatment are simply too high.
Among these barriers are the geographic separation of poor rural families from urban centers equipped to do surgery, lack of connections or knowledge of how to get treatment, and the infeasibility of families taking time away from work to bring children to treatment. The most significant barrier, however, is cost: the primary reason that the vast majority of children fail to receive treatment is that families simply cannot afford surgery. Many rural families do end up in hospitals in the cities, seeking medical treatment for their children. There, they may receive stopgap measures, such as emergency me
dication, that temporarily address some of the consequences of congenital heart disease. For lasting treatment, however, most children with significant defects will need open-heart surgery.
For most families, however, the cost of this surgery is simply beyond reach. With both parents working away from home, a family’s yearly income might be 1,000 to 2,
000 yuan (~$150-$300) in total, according to conversations with villagers, while open-heart surgery to treat the most common defects usually cost more than 20,000 yuan (~$3,000)—ten years’ worth of income. Before surgery is performed, families have to scrounge up the money to make a down payment to the hospital first. This comes from meager savings as well as loans from relatives, friends, neighbors, and, as a last resort, the bank. (Most families have government-run insurance coverage, but insuran
ce only covers up to 30% of the cost of surgery done in the city. Moreover, families have to come up with the initial cash down payment themselves, and will only be reimbursed up to a year later.)
This is beyond the means of most families, who might keep on going to the hospital to receive stopgap measures for emergencies, but stop short of getting surgery. Eight out of ten children who come to Lanzhou to receive treatment for severe defects will end up going home without the needed surgery, according to Gao. Many more do not receive any treatment at all.
Things are slowly getting better. Taking an approach from private charity, one group called the Little Red Scarf Alliance searches for and fully funds surgery for eligible children from poor rural families—in 2010 alone, the group paid for 187 successful surgeries. They also provide social support for the families of the children as they navigate the medical system, and when these families return home, the program enlists parents’ aid in creating a grassroots network that helps spread access for families in similar situations. Approaches like these have made a significant dent in the public health problem, but in the face of growing inequity, they are only one step toward the systematic change needed in equity and access to healthcare for these families.
Gao Bingren is the director of cardiothoraic surgery at the Second Hospital of Lanzhou University, and Gansu province’s leading researcher in congenital heart disease. He was interviewed in November 2010.
Seanan Fong was a student media intern at the Little Red Scarf Alliance during the fall of 2010. He spent 10 weeks on the ground shadowing and blogging about the experiences of the children going through the program.