{"id":2320,"date":"2018-07-23T10:56:27","date_gmt":"2018-07-23T08:56:27","guid":{"rendered":"https:\/\/www.alpha1-deutschland.org\/?p=2320"},"modified":"2024-06-03T12:29:59","modified_gmt":"2024-06-03T10:29:59","slug":"gesundheitspolitik-kampf-um-eine-alpha-1-leitlinie","status":"publish","type":"post","link":"https:\/\/alpha1-deutschland.org\/en\/gesundheitspolitik-kampf-um-eine-alpha-1-leitlinie","title":{"rendered":"Health policy: The fight for an Alpha-1 guideline"},"content":{"rendered":"<div id=\"fws_6a8deea8a9a82\"  data-column-margin=\"default\" data-midnight=\"dark\" data-top-percent=\"3%\"  class=\"wpb_row vc_row-fluid vc_row full-width-section\"  style=\"padding-top: calc(100vw * 0.03); padding-bottom: 0px; \"><div class=\"row-bg-wrap\" data-bg-animation=\"none\" data-bg-animation-delay=\"\" data-bg-overlay=\"false\"><div class=\"inner-wrap row-bg-layer\" ><div class=\"row-bg viewport-desktop\"  style=\"\"><\/div><\/div><\/div><div class=\"row_col_wrap_12 col span_12 dark left\">\n\t<div  class=\"vc_col-sm-12 wpb_column column_container vc_column_container col no-extra-padding\"  data-padding-pos=\"all\" data-has-bg-color=\"false\" data-bg-color=\"\" data-bg-opacity=\"1\" data-animation=\"\" data-delay=\"0\" >\n\t\t<div class=\"vc_column-inner\" >\n\t\t\t<div class=\"wpb_wrapper\">\n\t\t\t\t\n<div class=\"wpb_text_column wpb_content_element\" >\n\t<h1><span style=\"color: #004267;\">Health policy: The fight for an Alpha-1 guideline<\/span><\/h1>\n<\/div>\n\n\n\n<div class=\"divider-wrap\" data-alignment=\"default\"><div style=\"height: 50px;\" class=\"divider\"><\/div><\/div><div class=\"vc_separator wpb_content_element vc_separator_align_center vc_sep_width_100 vc_sep_border_width_5 vc_sep_pos_align_center vc_sep_color_grey wpb_content_element vc_separator-has-text\" ><span class=\"vc_sep_holder vc_sep_holder_l\"><span class=\"vc_sep_line\"><\/span><\/span><h4>Author<\/h4><span class=\"vc_sep_holder vc_sep_holder_r\"><span class=\"vc_sep_line\"><\/span><\/span>\n<\/div>\n<div class=\"wpb_text_column wpb_content_element\" >\n\t<div class=\"cmsms_post_content entry-content\">\n<div id=\"cmsms_row_5e660ba685140\" class=\"cmsms_row cmsms_color_scheme_default\">\n<div class=\"cmsms_row_outer_parent\">\n<div class=\"cmsms_row_outer\">\n<div class=\"cmsms_row_inner\">\n<div class=\"cmsms_row_margin cmsms_11\">\n<div class=\"cmsms_column one_first\">\n<div class=\"cmsms_text fadeInUp animated\" data-animation=\"fadeInUp\" data-delay=\"0\">\n<p><strong>Marion Wilkens<\/strong>, as published in Alpha1 Journal 1\/2018<\/p>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<footer class=\"cmsms_post_footer entry-meta\"><\/footer>\n<\/div>\n\n\n\n<div class=\"divider-wrap\" data-alignment=\"default\"><div style=\"margin-top: 25px; height: 5px; margin-bottom: 25px;\" data-width=\"100%\" data-animate=\"\" data-animation-delay=\"\" data-color=\"default\" class=\"divider-border\"><\/div><\/div>\n<div class=\"wpb_text_column wpb_content_element\" >\n\t<p>In the first half of 2018, we focused more on health policy. It&#039;s a vast field in which we still have much to learn and need to become much more involved. Who is familiar with the German Alpha-1-<a href=\"https:\/\/www.awmf.org\/leitlinien.html\" target=\"_blank\" rel=\"noopener noreferrer\"><strong>Guideline<\/strong><\/a>No one? No wonder, because they don&#039;t exist. We are \u2013 as so often \u2013 part of COPD, although AATD is known to also lead to liver or skin disease. The effects of AATD even occur in children, sometimes with severe courses and in very rare cases requiring transplantation \u2013 all areas not covered by COPD.<\/p>\n<p>But how do you proceed, who do you approach? Our Health Minister, Mr. Spahn, directly? Then we received help from Mr. Alexander Wilke (from the\u00a0<strong><a href=\"http:\/\/www.ifgv.net\/\" target=\"_blank\" rel=\"noopener noreferrer\">Institute for Evidence-Based Health and Care Management (IfGV).<\/a><\/strong>) very right, who together with us a\u00a0<strong><a href=\"https:\/\/www.alpha1-deutschland.org\/wp-content\/uploads\/2_1_Positionspapier-1.pdf\">Position paper<\/a><\/strong>\u00a0wrote.<\/p>\n<p>Knowing that it is virtually impossible to create our own guideline, we would still like to at least in the<strong>\u00a0<a href=\"https:\/\/www.alpha1-deutschland.org\/wp-content\/uploads\/3_020-006l_S2k_COPD_chronisch-obstruktive-Lungenerkrankung_2018-01.pdf\">COPD guideline<\/a><\/strong>\u00a0We will also contribute our points, and we will fight harder for this in the future. But we don&#039;t just want to contribute to the COPD guidelines, but also, for example, to the...\u00a0<strong><a href=\"https:\/\/www.lungeninformationsdienst.de\/aktuelles\/news\/artikel\/erste-europaeische-leitlinie-fuer-bronchiektasen\" target=\"_blank\" rel=\"noopener noreferrer\">Guideline for the treatment of bronchiectasis<\/a>\u00a0(<a href=\"https:\/\/www.alpha1-deutschland.org\/wp-content\/uploads\/4_brochiectasis-en.pdf\">European Lung Foundation: Bronchiectasis<\/a>).<\/strong><\/p>\n<p>Both guidelines mandate testing for AATM \u2013 there is sufficient data to support this.<\/p>\n<p>Incidentally, there is an international...\u00a0<strong><a href=\"https:\/\/www.alpha1-deutschland.org\/wp-content\/uploads\/5_Guidelines_AATD_intern.pdf\">Alpha-1 guideline<\/a>.<\/strong><\/p>\n<p>The position paper, entitled \u201eOpening of the\u00a0<strong><a href=\"https:\/\/www.g-ba.de\/institution\/presse\/pressemitteilungen\/632\/\" target=\"_blank\" rel=\"noopener noreferrer\">DMP<\/a><\/strong> \u2013 Part COPD for patients with alpha-1 antitrypsin deficiency in Germany\u201c was a start, but it didn&#039;t stop there, because in March Mr. Wilke and I presented at the <strong><a href=\"https:\/\/www.g-ba.de\/\" target=\"_blank\" rel=\"noopener noreferrer\">Joint Federal Committee (GBA)<\/a><\/strong>\u00a0We presented our concerns in Berlin and were met with a great deal of understanding.<br \/>\nOur arguments were taken to the GBA subcommittee and discussed there; at the beginning of April we received a\u00a0<strong><a href=\"https:\/\/www.alpha1-deutschland.org\/wp-content\/uploads\/8_Antwort-GBA.pdf\">very positive response<\/a><\/strong>. The committee members advocated opening the COPD disease management program (DMP) to patients with alpha-1 antitrypsin deficiency.<br \/>\nAccording to Mr. Wilke, we have already achieved a great deal \u2013 the door is open. In my opinion, everything takes far too long.<\/p>\n<p>On April 24th, Alpha1 Global organized a meeting at the European Parliament. Approximately 30 of us participated (Alpha1 experts, patient representatives from various countries, and 1-2 EU parliamentarians). Patient representatives from six countries reported on their experiences with Alpha-1 antitrypsin deficiency in their respective countries.<\/p>\n<p>This also showed that there is still much to be done to be heard by health policymakers and even more to achieve a better situation.<\/p>\n<p>On April 25th, the company CSL introduced a\u00a0<strong><a href=\"https:\/\/www.alpha1-deutschland.org\/wp-content\/uploads\/9_Report-EU-Alpha-1-Awareness-Day-Roundtable-Discussion.pdf\">Alpha-1 Awareness Day<\/a><\/strong>\u00a0(European Alpha-1 Awareness Day) was held with a roundtable discussion. This also consisted of patient representatives, Alpha-1 experts, and representatives of other organizations, and aimed to deepen the understanding of this rare genetic disorder.\u00a0<strong>(<a href=\"https:\/\/www.alpha1-deutschland.org\/wp-content\/uploads\/Summary-report-EU-Roundtable-on-AATD-25th-April-2018-Brussels.pdf\">EU Roundtable on Alpha-1 Antitrypsin Deficiency (AATD)<\/a>).<\/strong><\/p>\n<p>What good did that do? \u2013 I don&#039;t know. But in any case, raising awareness is important, and we see part of our responsibility as constantly drawing attention to ourselves and our illness.<\/p>\n<p>\u201e&quot;Constant dripping wears away the stone&quot;\u201c<\/p>\n<p>Eventually everyone will know about Alpha-1 Antitrypsin Deficiency \u2013 we&#039;re working on it.<\/p>\n<p>Marion Wilkens, as published in Alpha1-Journal 1\/2018.<\/p>\n<\/div>\n\n\n\n\n\t\t\t<\/div> \n\t\t<\/div>\n\t<\/div> \n<\/div><\/div>","protected":false},"excerpt":{"rendered":"Gesundheitspolitik: Kampf um eine Alpha-1-Leitlinie AutorIn Marion Wilkens, so erschienen im Alpha1-Journal 1\/2018 In der ersten H\u00e4lfte 2018 haben wir uns vermehrt um die Gesundheitspolitik gek\u00fcmmert. Es ist ein weites...","protected":false},"author":1,"featured_media":3745,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1,24,47],"tags":[],"class_list":["post-2320","post","type-post","status-publish","format-standard","has-post-thumbnail","category-allgemein","category-alpha1-journal","category-politik"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.3 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Gesundheitspolitik: Kampf um eine Alpha-1-Leitlinie<\/title>\n<meta name=\"description\" content=\"Wer kennt die deutsche Alpha-1-Leitlinie? \u2013 Niemand? Kein Wunder, denn es gibt sie auch nicht.Was wir dagegen tun k\u00f6nnen und schon tun, gibt es hier.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/alpha1-deutschland.org\/en\/gesundheitspolitik-kampf-um-eine-alpha-1-leitlinie\/\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Gesundheitspolitik: Kampf um eine Alpha-1-Leitlinie\" \/>\n<meta property=\"og:description\" content=\"Wer kennt die deutsche Alpha-1-Leitlinie? \u2013 Niemand? 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