European Liver Patients' Association ELPA, F. De Renesselaan 57, B - 3800 Sint-Truiden, Belgium.
J Hepatol. 2009 Dec;51(6):1068-73. doi: 10.1016/j.jhep.2009.09.010. Epub 2009 Oct 8.
Since its foundation in 2005, the European Liver Patients' Association (ELPA) - a not-for-profit-organisation with 21 members across Europe - has been at the forefront of raising awareness of liver diseases, in particular hepatitis, throughout the EU. In line with the main challenge for hepatitis carriers, which is to "become a patient", ELPA calls for targeted screening of risk groups in order to facilitate early diagnosis and, if appropriate, treatment. To this end, ELPA and its members have embarked on a multi-level lobbying campaign, involving EU and national policymakers, liver specialist associations and public health experts. First successes include the adoption of the European Parliament's Written Declaration on Hepatitis C and the European Centre for Disease Prevention and Control's (ECDC) decision to include viral hepatitis in its annual work plan as of 2008, as well as a compilation of expert recommendations on screening, which were endorsed by the European Association for the Study of the Liver (EASL). For a sustainable change in the perception of liver diseases by the public and decision-makers in public health and a subsequent improvement of the situation for patients and specialists, it will be important for both to move beyond the immediate doctor-patient relationship and address jointly a wider audience. Essential in this context is the link to cancer. Policymakers have to know that by taking preventative measures (primary and secondary) against liver disease they prevent liver cancer, one of the few cancers on the rise in Europe.
自 2005 年成立以来,欧洲肝脏患者协会(ELPA)——一个拥有 21 个成员的非营利组织——一直处于提高欧盟对肝脏疾病(尤其是肝炎)认识的前沿。ELPA 呼吁对高危人群进行有针对性的筛查,以促进早期诊断和适当的治疗,这符合肝炎携带者的主要挑战,即“成为患者”。为此,ELPA 及其成员已经开展了多层次的游说活动,涉及欧盟和国家政策制定者、肝脏专家协会和公共卫生专家。初步成功包括欧洲议会通过关于丙型肝炎的书面声明,以及欧洲疾病预防控制中心(ECDC)决定自 2008 年起将病毒性肝炎纳入其年度工作计划,以及关于筛查的专家建议汇编,该汇编得到了欧洲肝脏研究协会(EASL)的认可。为了使公众和公共卫生决策者对肝脏疾病的看法发生可持续的变化,并随后改善患者和专家的状况,双方都必须超越医患关系,共同面向更广泛的受众。在这方面至关重要的是与癌症的联系。政策制定者必须认识到,通过采取预防措施(初级和二级)来预防肝脏疾病,他们可以预防肝癌,这是欧洲为数不多的几种发病率上升的癌症之一。