儿童白血病治愈率超80% 很多进口药未能进医?！嗣裾?/title> <link href="/css/css.css" rel="stylesheet" type="text/css" /> <link href="/css/xywy_header.css" rel="stylesheet" type="text/css" /> <link href="/css/news_list_content.css" rel="stylesheet" type="text/css" />  <script type="text/javascript" src="http://www.rmzxb.com.cn/js/jquery-1.8.3.min.js"></script> <script>window.jQuery || document.write('<script src="http://www.rmzxb.com.cn/js/jquery-1.8.3.min.js" type="text/javascript"><\/script>')</script> <script src="/js/jquery.soChange1.js"></script> <script src='/js/roller.js'></script> <script src="http://www.rmzxb.com.cn/js/js.js"></script> <script src="http://www.rmzxb.com.cn/js/detailPagePublicJs.js"></script> <script src="http://www.rmzxb.com.cn/js/advPublicJs.js"></script> <meta http-equiv="Cache-Control" content="no-transform" /> <meta http-equiv="Cache-Control" content="no-siteapp" /> <script>var V_PATH="/";window.onerror=function(){ return true; };</script> </head> <body> <h1><a 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class="jiathis_button_weixin"></a> <a class="jiathis_button_renren"></a> <a class="jiathis jiathis_txt jtico jtico_jiathis" target="_blank"></a> </div> <script type="text/javascript" src="http://v3.jiathis.com/code_mini/jia.js?uid=1399539302485450" charset="utf-8"></script> </span><span id="i2i2jyu4k" class="fr">分享到：<img src="/images/fx.jpg" /> </span> </div> <div id="i2i2jyu4k" class="text_box"> <p align="center"> <p style="text-indent: 2em; text-align: left;">上周，作家罗尔通过“卖文救女”为身患白血病的女儿筹集医疗费用，数以万计的网友通过各种方式进行捐赠。不料，剧情发生变化，此事被指涉嫌营销和诈捐。</p><p style="text-indent: 2em; text-align: left;">如今，罗尔的女儿因病情危重仍躺在重症监护室，她代表的白血病患儿群体也再一次引起公众的关注。</p><p style="text-indent: 2em; text-align: left;">近日，新京报记者采访了白血病患儿家属及血液病专家，针对白血病的发病、治疗、医保等多方面内容全面解析儿童白血病。</p><p style="text-indent: 2em; text-align: left;"><strong>困惑 1</strong></p><p style="text-indent: 2em; text-align: left;"><strong>白血病与装修污染有关？</strong></p><p style="text-indent: 2em; text-align: left;"><strong>专家发病原因不明，勿与装修污染画等号</strong></p><p style="text-indent: 2em; text-align: left;">在罗尔“卖文救女”事件闹得沸沸扬扬的质疑声中，有人爆料说，罗尔的女儿之所以患上白血病，很有可能跟一家人过早搬入刚装修好的新家有关，因此，一些文章将白血病与装修污染挂上了钩。</p><p style="text-indent: 2em; text-align: left;"><strong>装修污染真的是白血病的致病原因吗？</strong></p><p style="text-indent: 2em; text-align: left;">“这种说法太恐怖，会让人人皆危，媒体一定要坚决刹住这种说法，不要过分宣传家装污染。”北京儿童医院血液肿瘤中心主任医师吴敏媛强调，白血病的病因复杂，至今不明确，一般认为“多次打击”学说比较靠谱，也就是说，在妊娠过程中胎儿基因发生了一些复杂的问题，导致孩子可能在受到一些打击后发病。生活中宣传绿色环保，但这并不意味着健康人呆在装修污染的屋子里就会得白血病，否则白血病的发病率不会只有39/100万。</p><p style="text-indent: 2em; text-align: left;">另外，还有一些因素是比较公认的白血病的可能诱因，比如杀虫剂、苯及辐射等?！爸郧康骺赡埽丶且蛭虺鱿治侍獾贾铝送换肪诚拢械娜司突岱⒉??！?/p><p style="text-indent: 2em; text-align: left;">发病原因不确定，是否意味着白血病无法预防？</p><p style="text-indent: 2em; text-align: left;">对此，吴敏媛认为，既然发病的机理尚不清楚，不用太纠结预防，否则人人自危，更不利于身体健康。</p><p style="text-indent: 2em; text-align: left;"><strong>困惑 2</strong></p><p style="text-indent: 2em; text-align: left;"><strong>白血病是否意味着绝症？</strong></p><p style="text-indent: 2em; text-align: left;"><strong>专家儿童白血病治疗技术成熟，治愈率超80%</strong></p><p style="text-indent: 2em; text-align: left;">“刚开始我认为白血病是一种绝症，除了哭还是哭?！焙匣级焯炝?化名)的妈妈说，儿子今年1月被确诊为“高?！毙图毙运柘赴籽。∏橐丫⒄沟侥圆恐惺嗌窬?，且有FLT3基因突变。她没有放弃，带着儿子北上，住进了北京大学人民医院，当天，她在医生的搀扶下签完了三张病危通知单。然而，徐天良幸运地活了下来，而且恢复得很好，能一口气爬楼梯到8层，踩自行车1公里。</p><p style="text-indent: 2em; text-align: left;">新京报记者采访的多位血液病专家均表示，儿童白血病已经不再是“绝症”，目前总体治愈率能达到80%以上。</p><p style="text-indent: 2em; text-align: left;">北京大学人民医院儿科副主任医师吴珺介绍，与成人白血病不同，儿童白血病最常见的类型是急性淋巴细胞白血病，这种白血病对普通化疗药物十分敏感，因此，采用多种药物联合化疗是最佳办法。只有少数高危型的急性白血病、慢性粒细胞白血病、反复发作或不能缓解的患儿，才有必要进行骨髓移植。目前骨髓移植风险也比以前大大降低。</p><p style="text-indent: 2em; text-align: left;">吴敏媛同时也强调，即便是难治、复发的患儿，造血干细胞移植同样很成熟，尤其是脐带血造血干细胞移植，因其采集方便、无伤害、配型成功率高、实物储存、移植后排异率低且程度较轻等特点，适合儿童疾病的治疗。</p><p style="text-indent: 2em; text-align: left;"><strong>困惑 3</strong></p><p style="text-indent: 2em; text-align: left;"><strong>医保报销能解决多大问题？</strong></p><p style="text-indent: 2em; text-align: left;"><strong>专家预防感染和抗感染的很多进口药不能进医保</strong></p><p style="text-indent: 2em; text-align: left;">2010年，我国开始对儿童白血病和儿童先心病进行提高住院补偿水平的试点工作，规定新农合对包括白血病在内的试点病种报销比例要达到限定费用的70%，并由大病救助基金给予贫困家庭再进行不低于限定费用20%的医疗救助，最高可达到90%甚至更高的补偿。</p><p style="text-indent: 2em; text-align: left;">罗尔女儿目前的治疗就享受到该政策带来的实惠。深圳市儿童医院提供的住院费用显示，截至11月29日，小姑娘的三次住院的总费用为204244.31元，其中医保支付168050.98元，自付36193.33元。</p><p style="text-indent: 2em; text-align: left;">“其实治疗儿童白血病的化疗药基本国产化，并不贵，且很多可以报销，关键在后面的预防感染治疗和抗感染阶段，很多进口药不能进医保。而这些孩子如不进行预防性抗感染治疗，一旦感染将花钱更多。目前，罗尔的女儿正处在感染期，花费将会很高。”吴敏媛说。</p><p style="text-indent: 2em; text-align: left;">尽管在本地治疗，北京患儿田峥嵘(化名)从7月确诊至今，医保报销之外仍花出了60万元，刚做完移植的他尚未出无菌仓?！疤蛋籽”ㄏ?0%，但住院报销封顶17万元/年，门诊2000元/年，很多无法报销。”田峥嵘的爸爸称，有很多患儿每年可报销的钱没超报销封顶线，但实际治疗支出远超17万元。</p><p style="text-indent: 2em; text-align: left;"><strong>专家合理的预防性用药应纳入医保</strong></p><p style="text-indent: 2em; text-align: left;">很多白血病患儿家庭受医保报销目录、封顶线、异地就医等因素影响，实际报销比例远远低于“名义上的报销比例”。</p><p style="text-indent: 2em; text-align: left;">“大夫说，移植不是治疗的结束，而是开始。生活费用、维持药和检查费、抗排异药和抗感染药费，这一座座大山压着我们?！毙焯炝悸杪杷?，由于是跨省治疗，他们需要先垫付费用，再回当地报销，最终能报多少不清楚。尽管新农合报销封顶为15万元，大病保险封顶为20万元。但实际上，很多费用不能报销，比如关键的进口抗感染药?！拔颐羌一顾闼忱?，好多孩子因为拿不出钱只能放弃或中断治疗?！?/p><p style="text-indent: 2em; text-align: left;">2013年，中国青年政治学院青少年研究院联合中国红十字基金会发布的《中国贫困白血病儿童生存状况调研报告》显示，白血病儿童家庭平均负债超过14万元，过半家庭的报销比例不到一半。经济窘迫直接影响到治疗效果，需要进行造血干细胞移植的白血病患儿中，只有30.81%的患儿完成了移植手术。</p><p style="text-indent: 2em; text-align: left;">“在合理应用的前提下，有些预防性用药应该纳入医保。此外，还应有商业保险和慈善机构的介入?！蔽饷翩禄怪赋?，由于经验不足、医院硬件条件等问题，目前白血病治疗的感染率仍比较高，致使很多钱花在了支持治疗和抗感染上，因此医院也应加强硬件改造。</p><p style="text-indent: 2em; text-align: left;">本版采写/新京报记者王卡拉</p><p><br style="text-indent: 2em; text-align: left;"/></p> </div> <p class="Editor">编辑：赵彦 </p> <div id="i2i2jyu4k" class="Paging"> </div> <p class="Keyword">关键词：儿童白血病治愈率进口药医保</p> <h1 class="pv_title_2 mt_15"><a href="/index.shtml" target="_blank" class="more mtb_14">更多</a><span id="i2i2jyu4k" class="t" id="a3"><a href="/index.shtml"><img src="/images/xg_t1.jpg" /></a></span></h1> 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