A MATTER OF LIFE AND DEATH

Chen Jingyu, a lung transplant expert and deputy director of the People's Hospital of Wuxi in Jiangsu Province, said the ongoing lobby is "a matter of life and death."

"Patients are dying," he said. "About one in three of my PAH patients leaves without any treatment. Those who struggle to afford are often debt-ridden and heavily depend on drug donations," said Chen.

Gu Hong, deputy chief of the clinic for congenital heart disease in children with the Anzhen Hospital in Beijing, said treatment of the disease dates back only 10 years in China, and there is little awareness of PAH in the country.

"That might explain why policymakers have not realized the pending demand of PAH patients for healthcare guarantees," she said.

"In roughly ten years, we have proved the effectiveness and necessity of providing PAH patients proper medical treatment. This is the right time to enlist social and governmental support to come to their rescue," Gu said.

Rino Aldrighetti, president and CEO of the Pulmonary Hypertension Association, who was invited by I SEEK to speak about the American patient society at Monday's seminar, said that PAH is a rare disease and often missed in diagnosis in the United States.

"I SEEK is very inspiring. It's a healthy thing for patients to find out they are not alone. Their ability to organize is a value in itself. They can build a better life for themselves and others," said Aldrighetti.

While there is currently no cure for PAH, American patients can access 12 kinds of treatment options with the help of private insurance, Medicare,Medicaid, prescription drug assistance programs, charitable organizations, advocacy groups and fundraising campaigns.

Chinese patients, by contrast, have to purchase drugs on their own unless they've joined a program of the China Charity Federation that offers boxes of drugs on a buy-one-get-four-free basis.

The luckiest minority live in Shenyang in Liaoning Province and Qingdao in Shandong Province, where local governments run a pilot program to reduce local PAH patients' drug expenses by 70 percent.