China's 'blue lips' struggle for recognition, treatment

Though their rare disease leaves them dizzy and struggling for breath, Chinese suffering from pulmonary arterial hypertension (PAH) have taken up the fight for recognition and treatment. During the third Pulmonary Hypertension Day on Monday, Chinese PAH patients held a policy seminar in Beijing and lobbied for the country's decision-makers to include PAH treatment in China's healthcare program. "Like any other patients in China, we want to live with dignity and no longer face the dilemma of either waiting for death or plunging into poverty," said Li Ying, a PAH patient from Shenyang in northeast China's Liaoning Province, in an interview with Xinhua. Unable to afford proper drugs for two years, Li's situation worsened until the Shenyang city government began a medical assistance program in 2012 to cover 70 percent of local patients' expenses for PAH drugs. For Li, the move, combined with drug donations by China Charity Federation, has reduced her spending for a monthly dose from 19,998 yuan to 1,200 yuan. FIGHTING FOR VISIBILITY, WAITING FOR HELP Li is a member of the Beijing-based I SEEK, China's first non-governmental organization established by PAH patients. To enhance publicity of the disease in China, Li and her peers in the organization call themselves "blue lips" after one of the more visible side effects of oxygen deficiency. I SEEK has created a series of programs for "blue lips" involving patient registry, patient education, mental health counseling and physician-patient relations management. Li Rong, founder and executive director of I SEEK, said that the organization's highest priority is to enlist all possible support from officials, medical professionals, philanthropists, celebrities and foreign peers to increase the visibility of PAH patients. "Compared to 'blue lips' elsewhere in China who still cannot afford any drugs, I am fairly lucky," said 30-year-old Li Ying, the patient from Shenyang. She worries that others might not be so lucky. PAH treatment is not included in the country's healthcare program, as existing governmental assistance is only experimental, and drug donations are impermanent. With a monthly income of 1,700 yuan, Li, a self-taught acupuncturist, has to care for her mother, who has been confined to a wheelchair by lower limb paralysis for years. Her father has not returned home since mother and daughter fell seriously ill, though he gives them 500 yuan a month. Li's worries are justified, doctors say. For a critical PAH patient, the specter of death always haunts. When the illness attacks, blood pressure in the pulmonary artery rises and causes oxygen deficit, and severe complications such as cardiopulmonary collapse can kill. Citing statistics by the U.S. National Institutes of Health from the mid-1980s, Cheng Xiansheng, professor with Fuwai Hospital for Cardiovascular Diseases, said that without treatment, the median life expectancy of patients at the time of diagnosis was 2.8 years. But based on analysis by the French Pulmonary Arterial Hypertension Network in June 2010, proper treatment will significantly improve the survival rate of these patients, he said.