Blue book sheds light on struggles of SLE patients

More than half of the patients suffering from the prototype autoimmune disease Systemic lupus erythematosus, or SLE, are in a severe condition with the function of at least one organ impaired, according to a blue book published on Aug 26.

Produced by the Research Center for Public Health at Tsinghua University in Beijing and published on Wednesday, the blue book aims to provide insights into the strategies for diagnosis and treatment for SLE patient community.

Based on a survey that polled nearly 1,100 such patients in the country, the blue book stated that nearly 80 percent of SLE patients are using hormone drugs, which often produce side effects such as metabolic and electrolyte disorders, osteoporosis, and irreversible organ injuries.

As such, improving the accessibility to innovative therapies is key to solving the practical problems faced by the SLE patient community in the country, medical experts wrote.

Zeng Xiaofeng, director of the department of rheumatology and immunology at Peking Union Medical College Hospital, said that long-term, standard medical treatment is necessary for SLE patients, and delayed and ineffective treatment may cause severe consequences to their health, creating a burden for families and society.

He also called for more related departments to be established at grassroot medical institutions throughout the country to effectively manage and treat local patients.

The blue book also illustrated the living conditions of patients suffering from SLE – they are often women of child-bearing age - and highlighted their unmet medical and social needs.

Su Jing, vice director of the center, said that the team working on the book discovered that many SLE patients are unemployed and do not have the opportunity to get married and start a family because of the disease.

“We hope social systems from different aspects can be improved to raise the living quality of these patients, who have strong expectations to lead a normal life,” she said.