GROWING UP AND GETTING LOUDER: THE STORY OF PHA JAPAN

PHA JapanBy Noriko Murakami, Founder

In March 1996, my daughter, aged 14, was diagnosed with IPAH. Every doctor we talked to in Japan said there was no way to cure her and that she only had six months to live. We were shocked and desperate. Thankfully, we were lucky to have a family member who was a doctor working in the U.S. She told us about Dr. Robyn Barst and Flolan therapy. We took our daughter to New York right away and she started treatment there. She got a lot better and went back to school as soon as she returned to Japan. This is how my daughter became the first Flolan patient in Japan. At the time, no one in Japan — not even the doctors — knew of this therapy. We went to see many doctors to try to convince them how good this therapy was and to show them how it had helped us.

In the beginning, we had great difficulty finding doctors in Japan who would look after my daughter. After hearing about her case, some sent their patients (about 10 patients at that time) to U.S. hospitals to start treatment. They got better, but the medication was still not approved in Japan. We continued to see many doctors to show them the treatment. At the same time we approached the Minister of Health to try to convince him that the medication should be approved and covered by national health insurance.

As we pushed for these changes, we realized we needed a patient’s organization in order to be more effective. So with other parents who had taken their children to the U.S. for treatment, we formed PHA Japan in 1999. Soon after, the founders attended PHA’s 2000 International PH Conference in Chicago, Ill. We were extremely impressed by what PHA was doing to help patients and we wanted to learn from them as a successful model of a PH support organization.

When we founded PHA Japan no one knew what PH was and our children were abandoned, even by the doctors. Because of the lack of a formal government non-profit registry system for small patient groups such as ours, we have had a very difficult time from the beginning. PHA Japan itself is not a non-profit registered organization as we are too small to register here. However we are a member of the Tokyo Municipal Non Profit Organization, an umbrella organization of 15 small support groups like us, representing different diseases. Despite not being able to formally call ourselves a non-profit, we operate as one and have managed to, throughout the years, grow to over 120 members throughout Japan. We are also the only PH organization in Japan.

Even without registration and government support we knew there was a lot that could be done. Talking and teaching others about the disease was the most important. That is how we started: by talking. We knew a few PH patients and family members at that time, so we asked them to come a small meeting we organized in Tokyo. We also invited a PH-treating doctor to this meeting. Everyone talked and talked about personal experiences for hours and asked the doctor about the disease and treatments. Everyone who attended the meeting was so happy and wanted to meet again. That was the start of our organization. We continue to organize the same kind of meetings regularly, approximately once a year.

One of the most important things we did was that every time we organized meetings, we invited doctors known to be “PH specialists” in Japan. We gradually managed to build a partnership with them and, we think, this was a great help for the development of our organization. For example, we asked them to help with the translation when we published the Japanese version of PHA’s Patient’s Survival Guide, and to attend the First National PH Conference in Tokyo held in October 2006.

After years of hard work, we managed to get Flolan approved and covered by the Japanese national health insurance. However, this victory alone was not enough. Because of the very high cost of the medication in Japan, patients are unable to get adequate amounts of this treatment. PHA Japan has worked hard to try to improve this situation, but the problem of expense has not yet been solved. Fortunately, Tracleer has now been approved.

Since we formed PHA Japan, one of our goals has been to teach everyone, including doctors, what is happening outside Japan and to reinforce that it is important to learn from the international PH societies. This is why we continue to be very active in the international PH community and why we attend international conferences.

In order to continue providing updated information we maintain a website, www.pha-japan.ne.jp. We also print newsletters and organize conferences. PHA Japan has taken a leading role for the improvement of life for the PH community here, and we will continue to educate and fight until the day there is a cure. Perhaps you can say that one of the strongest features of PHA Japan is our determination to raise awareness. As long as all of the members of an organization remember the importance of the mission to fight against PH, we fully believe that a patients’ organization can grow and be successful even in a system where it cannot be formally registered and must exist without governmental support.

© 2006


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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.