媒體報導
New foundation caters to those with rare cancers
2016.05.07
Cancer information and consultation for patients with any kind of cancer is available through a new foundation launched yesterday, which also aims to address the predicaments of people afflicted with lesser-known cancers who often find themselves having nowhere to turn.
癌症孤兒，八成癌友無人發聲
2015.05.07
根據國民健康署統計，民國101年新增約9萬多名罹癌個案。台灣全癌症病友連線（簡稱全癌連）理事長林葳婕表示，目前全台有近50萬癌症人口、有80種癌別，但卻有8成癌友，無病友團體為其發聲，形同癌症孤兒。為此，全癌連的成立提供癌友各方面的幫助、並為其發聲。
一家八人七罹癌 全癌連今成立
2015.05.06
一家八口七人罹癌，71歲胡先生罹患皮膚癌、肺腺癌，家人則分別罹患肝癌、乳癌及甲狀腺癌等，除了乳癌有病友協會，其餘癌症均找不到「家」，缺乏病友間的打氣鼓勵。據統計，台灣約有80種癌別，僅16種癌別病友成立病友組織，八成癌友找不到病友夥伴，國內癌友團體上午成立台灣全癌症病友連線（全癌連），提倡癌友病權，推動醫療政策透明。
New foundation caters to those with rare cancers
| New foundation caters to those with rare cancers | ||
| Thu, May 07, 2015 - Page 3 (TAIPEI TIMES/By Stacy Hsu/Staff reporter) 原載：TAIPEI TIMES/Taiwan News |
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| Cancer information and consultation for patients with any kind of cancer is available through a new foundation launched yesterday, which also aims to address the predicaments of people afflicted with lesser-known cancers who often find themselves having nowhere to turn. “There are more than 80 kinds of cancer [reported] in Taiwan, but only 16 of them have specific patient groups in which people with the disease can resort to for support and treatment information,” said Lin Wei-chieh (林葳婕), chairwoman of the newly founded Taiwan Association of Cancer Patients, at a news conference in Taipei. Lin said the lack of variety of support groups means many individuals who are suffering from less common cancers are left stranded, with no one to help them fight for their medical rights. Citing the example of a 71-year-old man surnamed Hu (胡) from Kaohsiung, Lin said that seven out of Hu’s eight family members were diagnosed with cancers, including liver, breast and thyroid cancers. “Hu was diagnosed with skin cancer seven years ago, before coming down with four other types of cancer, including adenocarcinoma — a type of lung cancer — two years ago. However, he only managed to find one cancer patient support group matching his types of diseases for support,” Lin said. The association was established because of the many cancer patients who had approached Lin to vent their frustration over being an orphan in the cancer patient community, and also because government officials said that they had trouble finding “representative voices” for people with certain cancers, Lin said. One of the founding members of the association, Mental Health Association Taiwan director-general Chang Chueh (張玨), said she only realized how many tasks a cancer patient must take on after she was diagnosed with endometrial cancer several years ago. “Thanks to rapid advances in medicine, patients can now live with cancers as a chronic disease rather than a death sentence. However, we as cancer patients not only require mutual support, but also a place in the government’s medical policymaking, which is one of the goals the association aims to achieve,” Chang said. Lin said nearly 100 patients with dozens of different cancers have joined the association, which is to provide them with cancer information, spiritual growth classes and a platform to express their opinions and suggestions. |
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癌症孤兒，八成癌友無人發聲
| 癌症孤兒，八成癌友無人發聲 | ||
| 2015-05-07 08:56:24 聯合報 記者黃筱雅／專題報導 原載：聯合報 |
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| 根據國民健康署統計，民國101年新增約9萬多名罹癌個案。台灣全癌症病友連線（簡稱全癌連）理事長林葳婕表示，目前全台有近50萬癌症人口、有80種癌別，但卻有8成癌友，無病友團體為其發聲，形同癌症孤兒。為此，全癌連的成立提供癌友各方面的幫助、並為其發聲。 林葳婕指出，自民國71年起，癌症已蟬聯32年國人十大死因之首，但因為有些癌症惡化速度快，或是癌病人數較少等，使得雖然癌別高達80種，卻只有16種癌別成立團體，意即有8成以上癌症病友，未有相同的病友夥伴、沒有能發聲的團體，甚至在面對醫療體制未能得到幫助時求助無門，成為「癌症孤兒」。 參與昨日全癌連活動的衛生署前署長楊志良提到，自己是攝護腺癌病友，很能體會癌友的感受，不過幸好台灣醫療資源豐富，以及全民健保給予良好的照護，目前遵照醫師指示循序漸進治療，有時甚至會忘了自己是癌症病友，由於目前生活輕鬆自在，也決定參選國民黨內初選總統提名。 不過，像楊志良一樣願意公開得癌症的病友並不多見，為了幫助其他癌友，林葳婕提到，成立台灣全癌症病友連線，提供病友教育、成長課程，還給予許多醫療協助，如瞭解藥品資訊、看懂病理報告等，也給病友們社會支持、經濟就業、急難救助等，更匯集癌友們意見，為大家權益發聲。 此外，中華心理衛生協會理事長張珏表示，全癌連強調癌友全人照顧的重要性，並訴求不單只是勿將癌症醫療化，提供健保療法的選擇，也幫助癌友的心理健康及癌症防治。她也鼓勵年滿20歲以上，並曾有癌症病史或其親屬們申請入會，以凝聚癌友的力量，表達自我的醫療訴求。 |
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一家八人七罹癌 全癌連今成立
| 一家八人七罹癌，全癌連今成立 | ||
| 2015-05-06 12:48 聯合報 李樹人/報導 原載：聯合報 |
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| 一家八口七人罹癌，71歲胡先生罹患皮膚癌、肺腺癌，家人則分別罹患肝癌、乳癌及甲狀腺癌等，除了乳癌有病友協會，其餘癌症均找不到「家」，缺乏病友間的打氣鼓勵。據統計，台灣約有80種癌別，僅16種癌別病友成立病友組織，八成癌友找不到病友夥伴，國內癌友團體上午成立台灣全癌症病友連線（全癌連），提倡癌友病權，推動醫療政策透明。 來自高雄的胡先生在記者會表示，七年前被診斷出皮膚癌，隔兩年又被診斷出肺腺癌，第一次罹癌時，恐懼無助，第二次罹癌，就有經驗，知道該跟醫師問什麼。 胡先生說，不同癌症，在治療和照護上也有所差異，他罹癌後至癌症病房當志工，但迄今僅遇過兩名皮膚癌癌友，缺乏相關病友團體，難以伸張醫療權益。 「有聲音，才有力量」台灣全癌症病友連線理事長林葳婕指出，根據癌症登記，台灣有八種次癌別，卻僅有16種癌別病友成立病友組織，八成癌友找不到病友夥伴，更無幫他們發聲的團體。 罹患子宮內膜癌的台灣大學公共衛生學院副教授張珏說，「大部分的癌友都不知為何會得到癌症，但全部癌友都想要知道，政府可以幫助我們活下去嗎？」 全癌症病友連線已有十幾種癌別、近百位癌友加入，未來將匯集癌友的意見，為癌友權益而發聲，年滿20歲、曾有癌症病史的病友及其親屬均可申請入會。 |
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