FROM THE LABORATORY TO THE VILLAGES: THE STORY OF PHA CHINA

PHA ChinaBy Zhi-Cheng Jing, MD, Founder

It is estimated that there are 2,500 to 5,000 new IPAH patients in China each year. For other forms of PH, the numbers are most likely even higher. The average time a PH patient survives without any treatment is about two years. Most patients are misdiagnosed initially and simply wait for the end, because they cannot afford the expensive medication. PHA China is working to change that reality.

While I was doing my PhD training, my mentor’s research interests were COPD (chronic obstructive pulmonary disease), pulmonary-heart disease and pulmonary embolism; this led me to specialize in pulmonary vascular disease and PH. However, in 1996 there was no effective approach to managing pulmonary hypertension in China, so doctors abandoned research in this area. Because of a lack of target-oriented drugs in China, PAH research was wholly silenced. I decided to dedicate myself to this area and initiated work on the genetics of familial PAH in 1998.

As my research progressed I found that the prognosis for PAH patients in China was much worse than in much of the Western world. Western countries began to report that Flolan can improve the outcome for PAH patients, but in China we still had to face the reality that there were no available drugs. We saw the hopelessness in the eyes of the patients and their families. It was then that I decided to do everything in my power to help these hopeless persons. My colleagues and I began to take trips to poor villages to help familial PAH patients. Through more and more clinical practice we realized that these poor patients needed support in the form of an organization that would advocate for them.

It was then that I learned of PHA in the United States. I felt that this was a very good organization, working hard to improve the survival and quality of life of patients. But Chinese culture is very different than that of western countries and patients are unlikely to take action to spontaneously establish an organization.

Facing these cultural issues, I began contact with PHA in the U.S. and established a website. I also began to organize educational programs for patients and we translated the 3rd edition of Pulmonary Hypertension: A Patient’s Survival Guide into Chinese. In 2006 PHA China held our first annual National PH Patient Club Meeting. PHA China has also held a series of PAH training courses for physicians teaching them things such as standard PH test operating procedures and proper management of PH patients. PHA China has facilitated the creation of bigger medical centers and special outpatient clinics and wards for PH patients. We’ve been on the forefront of recruiting more and more physicians to join our team to fight against PH.

Presently, we have set up a PAH hotline for patients. We have also conducted multi-center studies to investigate the efficacy and tolerability of bosentan, iloprost, sildenafil, and vardenafil in PAH patients. Finally, we’ve organized Chinese experts to draft consensus statements on the management of PAH in China. We hope that all of our efforts can change the situation of PH patients in China leading to improved quality of life. Our next step will be to set up a PH University in China in order to train more PH specialists and provide more education to patients. Our aim is to leverage PH research and management onto a higher stage in the world.

PHA China will continue to help patients and their families cope with this devastating disease. We will provide networking opportunities to end their isolation, assist in locating doctors and medical facilities with expertise in treating PH, and form support groups to allow patients to establish contact with others. In PHA China patients have found a way to deal with their hopelessness.

© 2006


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NORD

The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.