ISeek Cultural Center is a public welfare organization initiated by patients with PAH (pulmonary artery hypertension), which aims to provide support and service for people with invisible disabilities as PAH.
June 20th to 22nd, 2014, the 11th international pulmonary hypertension science conference was held in Indianapolis, the state capital of Indiana, which is a famous car racing city. Therefore, conference organizer designated “Racing toward the road of healing” as the theme of this event. This is the voice of two and half million patients worldwide and also the common goal of over 60 pulmonary hypertension patient organizations striving for. Of course, every one of our patients, their families, health care professionals, volunteers, and those engaged in this welfare are well aware of achieving this goal is just like car racing, full of challenges.
In the evening of June 18, at the welcome party held for leaders of pulmonary hypertension organizations worldwide, representative Huan Huang of Iseek organization started with sharing his own illness, what has gone through in founding Iseek organization and the progress achieved in the past three years. Then followed up by similar experience sharing by organizations from South Africa, Israel, Brazil, Mexico, Saudi Arabia and other countries. "When my mother was diagnosed with this illness, I know only two such patients in Brazil. I know if I do not do it, nobody will", "In South Africa, we have only two treatments available for this disease", "I was diagnosed just a year ago. This is my first time to participate in International Pulmonary Hypertension Science Conference. I am very happy and I will bring back your stories back to Mexico ". Every face in the conference is new to us and yet their stories are so familiar. Although we are unable to communicate fluently in English or Spanish but we feel the understanding and caring from an old friend. "Hey, how is your daughter ?", "She is fine, and you?". Like Iseek organization, most pulmonary arterial hypertension organizations are founded by patients or their families.
There is barely any trace of hardship left on our faces. In fact, it inspired all of us to be more determined to overcome the challenges, to have more wisdom in operating our organizations. For the whole day of June 19, leaders from over 30 organizations of 23 countries exchanged their experience and shared various aspects of successful projects on how to design fundraising, public advocacy, how to expand media publicity and volunteer management. For issues of common concern facing our work, such as “how to work together with your doctors? What to do when there is disagreement among doctors ?”, doctor Karen told us to establish a set of incentives to energize doctors and encouraging their participation. Dr. Karen is the chief counsel of American Pulmonary Hypertension Association medical consultant group, also the medical director of Respiratory Medicine & Critical Disease at University of South Alabama. In fact, through this platform of patient organizations, we can more effectively promote interdisciplinary and professional exchanges worldwide. This is particularly important for pulmonary hypertension.
With professional treatment center, but limited access to drugs, or drugs are available but affordability is the major concern facing many countries. Accordingly, Iseek and patient organization from South Africa shared the difficulties they encountered in policy advocacy and the accomplishment they achieved during our international strategy seminar on June 21st. In South Africa, the only drug and treatment patients can get is sildenafil and inhaling oxygen. One patient's mother named Gabi Lowe went through cooperation with doctors from various nations and repeatedly submitted materials to the local law agency, and drug and pharmaceutical import agency, to explain the situation. As result, it successful introduced "Flolan" to South Africa. To ensure the continued supply of Flolan to her daughter, the mother quit her job, carried out a lot of fundraising activities and public advocacy. Family, friends and local musical band are also pleased to join the effort and composed a widely circulated charity song "I need more time" and founded the "Jenna Lowe Foundation". In China, because of our unique drug approval and health insurance policies, it often causes delay or neglect in making pulmonary hypertension target drug available on the market. However, these issues don’t stop us from making progress. Like what Jenna's mother said: "Don’t tell me it is impossible, tell me why ? Tell me what are the barriers to introduce the treatment to China and what are the proper way to do so ? Let’s understand this situation and resolve the predicament our patients are facing."
In the evening of June 21 and afternoon of June 22, the patient organizations from 23 countries has round table meeting once again. This meeting concluded 5 preliminary projects for further in-depth cooperation. They are 1). doctor education, 2). early diagnosis, 3). information sharing, 4). drug accessibility, 5). patient registration.
However, the inspiration and motivation from this meeting is more than just that. Patient Chloe Temtchine, who once was a singer, wearing oxygen tube in the opening ceremony with the song "Be Brave" won the applause of more than 1,000 conference participants. At the welcome dinner banquet, a 60-year-old board member patient shared her 40-year experience full of sadness and joy in fighting the disease. Her remarks caused our emotion up and down, laugh and sorrow. "I was diagnosed with idiopathic pulmonary hypertension at age 23. At that time the doctor told me there was no medicine to treat this. I had no choice but to give up my job as a sports coach and became wheelchair bound. The diagnose came right after I was engaged with my boyfriend and not sure what to do next ?”. Aren’t Chinese patients also facing similar difficulties? Fortunately, this patient was later on treated with target drug and was able to resume her work for some period of time and adopted two boys from Korea. But life is not a smooth sailing since then. This patient subsequently suffered multiple critical illness and eye surgery. With the support from her family, she overcame all these hardship. Last year she became a grandmother. “When I was diagnosed, doctor told me I have only few more months to live. Now I am a grand mom.”.
At the closing ceremony, a video by patient family member Steve was played on the big screen. It recorded the good times we spent together in the past few days. Children wearing colorful commemorative badges played car racing games. Adult patients drove their electric wheelchairs and while waving flags. Four doctors put aside their scalpels, started around-the-clock fundraising across the United States for our association. Two classmates ran into each other unexpectedly at the conference after being apart more than 10 years. This conference put them together again with another new level of relationship.
At the end, Dr. Karen encouraged all of us. The growth and development of Pulmonary Hypertension Association is the result of effort by Executive Chairman and its board, but the most important is everyone's participation and long term support ! We plan to meet again two years later. Let’s hold hand in hand and work together racing toward the road of healing.
Original article written by Huan Huang, translated by Joe Hsu, Edited by Yanyan Zhang
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