A blue book released on Feb 29 in Beijing documents the plight of patients suffering from thalassemia, a blood disorder caused by variant or missing genes and commonly known as Mediterranean anemia.

It is the first book on thalassemia prevention and treatment in China. The medical community estimates China has more than 30 million people with thalassemia traits, and 300,000 patients with mild or severe thalassemia.

Breadwinners of families with the disease are often farmers or migrant workers who have received poor education. It is common for such a family to become impoverished, due to the expense and limited access to treatment, and restricted reimbursement from medical insurance, the book shows.

About 90 percent of the families have yearly incomes of less than 60,000 yuan ($9,000), and about 80 percent of the families incur debts to treat the children, according to the book.

Blood transfusion, the standard treatment for the disease, costs 1,700 yuan per month on average, while about 3,300 yuan per month is needed to reduce an iron overload in the body, which is caused by the disease itself and blood transfusions, the book says.

If children with thalassemia get proper treatment, they are able to live a normal life, however, the disease defies detection because it develops slowly, and affected children are usually underweight. As they grow, they cannot obtain professional skills to make a living, and have a much shorter life span than healthy people, due to limited access to medical treatment, education, and social support, according to the book.

The book is jointly produced by Beijing AngelMom Charity Foundation, China Philanthropy Research Institute at Beijing Normal University, China Thalassemia Union and China Siyuan Foundation for Poverty Alleviation.

Related:

Study: Chinese eating less salt, but still too much