A new Chinese book shines a light on patients with thalassemia in China. It is an anemia that disrupts the production of hemoglobin in the blood and can lead to serious health issues such as bone deformities and cardiovascular problems. China has an estimated 30 million people with traits of the anemia and 300,000 with mild or severe thalassemia.

Blue Book of Thalassemia in China, the first major Chinese book on the subject, was released in Beijing recently.

It talks of prevention, treatment, medical insurance, people's awareness and support for the patients and their families, and is expected to be well-received by not just the country's medical community but the general public as well. The book is based on a study by a group of researchers from Beijing Normal University.

Beijing AngelMon Charity Foundation, a Chinese charity that offers financial help to thalassemia patients, initiated the book project, along with the China Thalassemia Union and China Siyuan Foundation for Poverty Alleviation.

According to the book, people with traits of thalassemia alone don't usually need medical intervention but if both parents of a child have the genetic traits that trigger the anemia, the possibility of the child being healthy is only around 25 percent. In one of two such cases, the child will show similar traits and in one of five, the thalassemia will be severe, requiring bone marrow transplants, blood transfusions, removals of excessive iron from the body or removals of enlarged spleens.

For the book, scholars from the university's China Philanthropy Research Institute conducted surveys and interviews of more than 1,000 patient families across 90 cities in 10 provinces in southern China, where the thalassemia incidence is noticeably higher than in other parts of the country.

The main breadwinners of families with the disease are often farmers or migrant workers who face the burden of medical expenses and find insurance reimbursements difficult to come by.

About 90 percent of the families surveyed for the book earn less than 60,000 yuan ($9,230) a year, and some 80 percent of the families have taken out loans to get their children treated, the book says.

Blood transfusions, a standard treatment for the disease, costs an average of 1,700 yuan per month, and some 3,300 yuan per month is needed to treat excessive iron.

It is seen worldwide that children with thalassemia respond well to proper and timely treatment, but in China's the progress in fighting the disease has been slow.

Young adults with the anemia also find it difficult to obtain professional skills to make a living, and have much shorter life spans than healthy people due to limited access to treatment and poor social support, the book adds.

liuzhihua@chinadaily.com.cn

(China Daily 03/09/2016 page20)