{"id":37663,"date":"2019-11-12T15:43:47","date_gmt":"2019-11-12T15:43:47","guid":{"rendered":"http:\/\/jomec.co.uk\/thecardiffian\/?p=37663"},"modified":"2019-11-12T15:43:47","modified_gmt":"2019-11-12T15:43:47","slug":"patient-considers-move-to-england-for-life-saving-drug","status":"publish","type":"post","link":"https:\/\/cardiffjournalism.co.uk\/thecardiffian\/2019\/11\/12\/patient-considers-move-to-england-for-life-saving-drug\/","title":{"rendered":"Patient considers move to England for life-saving drug"},"content":{"rendered":"\n<h3 class=\"wp-block-heading\">Wales is last home nation to agree deal for \u00a3100,000 Cystic Fibrosis treatment<\/h3>\n\n\n<p>A CYSTIC fibrosis patient waiting to see whether a life-saving drug will become available in Wales says she would move to England if her life depended on it.<\/p>\n\n\n<p>Campaigners say the wait for the drug Orkambi to become available to Welsh patients is too long. Lucy Taylor says that she would &#8220;consider moving to England if a deal couldn&#8217;t be done&#8221;.<\/p>\n\n\n<p>Talks are continuing between NHS Wales, the Welsh Government and Vertex Pharmaceuticals. At the end of October, Northern Ireland secured a deal meaning Wales is the last home nation to get access.<\/p>\n\n\n<figure class=\"wp-block-image\"><img decoding=\"async\" width=\"960\" height=\"539\" loading=\"lazy\" src=\"https:\/\/jomec.co.uk\/thecardiffian\/wp-content\/uploads\/2019\/11\/Image-4-1.jpeg\" alt=\"\" class=\"wp-image-37820\" srcset=\"https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2019\/11\/Image-4-1.jpeg 960w, https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2019\/11\/Image-4-1-300x168.jpeg 300w, https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2019\/11\/Image-4-1-770x432.jpeg 770w, https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2019\/11\/Image-4-1-500x281.jpeg 500w, https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2019\/11\/Image-4-1-293x165.jpeg 293w\" sizes=\"auto, (max-width: 960px) 100vw, 960px\" \/><noscript><img decoding=\"async\" width=\"960\" height=\"539\" src=\"https:\/\/jomec.co.uk\/thecardiffian\/wp-content\/uploads\/2019\/11\/Image-4-1.jpeg\" alt=\"\" class=\"wp-image-37820\" srcset=\"https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2019\/11\/Image-4-1.jpeg 960w, https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2019\/11\/Image-4-1-300x168.jpeg 300w, https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2019\/11\/Image-4-1-770x432.jpeg 770w, https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2019\/11\/Image-4-1-500x281.jpeg 500w, https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2019\/11\/Image-4-1-293x165.jpeg 293w\" sizes=\"(max-width: 960px) 100vw, 960px\" \/><\/noscript><figcaption>Lucy Taylor, from Newport, lives with cystic fibrosis<\/figcaption><\/figure>\n\n\n<p>Ms Taylor, 26, from Newport, said: \u201cIt seems to be taking too long and people\u2019s lives do depend on it, it\u2019s not fair to keep us people in Wales waiting so anxiously.\u201d<\/p>\n\n\n<p>While Orkambi has been making the headlines, more work needs to be done to make people aware of cystic fibrosis, she added.<\/p>\n\n\n<blockquote class=\"wp-block-quote is-layout-flow wp-block-quote-is-layout-flow\"><p>People have heard of the illness, but a lot of people still don&#8217;t know what it really is and how it affects people &#8211; Lucy Taylor<\/p><\/blockquote>\n\n\n<p>Ms Taylor, who was diagnosed when she was six weeks old through a sweat test, said: \u201cPeople have heard of the illness, but a lot of people still don\u2019t know what it really is and how it affects people.\u201d<\/p>\n\n\n<p>Cystic fibrosis is an inherited gene condition that causes thick\nmucus to build up in the lungs and digestive system, leading to a range of symptoms.\n<\/p>\n\n\n<p>After her diagnosis, Ms Taylor had countless chest infections that were treated by IV antibiotics.<\/p>\n\n\n<p>Ms Taylor developed diabetes at the age of 11, which requires daily insulin injections. In 2012, she had a partial lung collapse that almost required surgery. She takes around 20 medications daily, causing a range of side-effects from wheeziness to tightness of the chest.<\/p>\n\n\n<p>As well as medication, Ms Taylor has physiotherapy twice a day and exercises for an hour daily.<\/p>\n\n\n<p>While the Orkambi drug could have a \u201chuge positive impact\u201d on her life, the medication regime itself won\u2019t change.<\/p>\n\n\n<p>Last week, Cystic Fibrosis Trust were in talks with the Welsh\nGovernment to discuss how many people in Wales could benefit from the\ntreatment.<\/p>\n\n\n<figure class=\"wp-block-embed-twitter aligncenter wp-block-embed is-type-rich is-provider-twitter\"><div class=\"wp-block-embed__wrapper\">\n<blockquote class=\"twitter-tweet\" data-width=\"550\" data-dnt=\"true\"><p lang=\"en\" dir=\"ltr\">The wait in Wales must end. We have asked for clarity from <a href=\"https:\/\/twitter.com\/WGMin_Health?ref_src=twsrc%5Etfw\">@wgmin_health<\/a> and <a href=\"https:\/\/twitter.com\/VertexPharma?ref_src=twsrc%5Etfw\">@VertexPharma<\/a> for people with <a href=\"https:\/\/twitter.com\/hashtag\/CysticFibrosis?src=hash&amp;ref_src=twsrc%5Etfw\">#CysticFibrosis<\/a> in Wales. This week we worked with <a href=\"https:\/\/twitter.com\/WelshGovernment?ref_src=twsrc%5Etfw\">@WelshGovernment<\/a> to provide info on the number of people in Wales who can benefit. <a href=\"https:\/\/twitter.com\/hashtag\/LifeSavingDrugsNow?src=hash&amp;ref_src=twsrc%5Etfw\">#LifeSavingDrugsNow<\/a> \u2013 no more delays.<\/p>&mdash; Cystic Fibrosis Trust (@cftrust) <a href=\"https:\/\/twitter.com\/cftrust\/status\/1191762719634001920?ref_src=twsrc%5Etfw\">November 5, 2019<\/a><\/blockquote><script async src=\"https:\/\/platform.twitter.com\/widgets.js\" charset=\"utf-8\"><\/script>\n<\/div><\/figure>\n\n\n<p>In June, chief executive of Cystic Fibrosis Trust, David Ramsden, said: \u201cFor people with CF and their families in Wales, the joy and optimism of these results was bitterly soured by the fear and anxiety that they will never get to use them.\u201d<\/p>\n\n\n<p>He pressed the importance of a \u201cWelsh solution that works for people in Wales with cystic fibrosis\u201d. Without progress, Welsh patients remain \u201cfrustrated, angry, and distressed\u201d, he added.<\/p>\n\n\n<p>Ms Taylor is hopeful that Wales will make a deal with Vertex as she raises awareness by writing on her blog \u201cto give people more of an idea what it\u2019s like to live with the illness\u201d.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Wales is last home nation to agree deal for \u00a3100,000 Cystic Fibrosis treatment A CYSTIC fibrosis patient waiting to see whether a life-saving drug will become available in Wales says she would move to England if her life depended on it. Campaigners say the wait for the drug Orkambi to become available to Welsh patients is too long. Lucy Taylor says that she would &#8220;consider moving to England if a deal couldn&#8217;t be done&#8221;. Talks are continuing between NHS Wales, [&hellip;]<\/p>\n","protected":false},"author":105,"featured_media":37782,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"footnotes":""},"categories":[92,113],"tags":[582,1385,1106,1386,1387,1388,540,1389,1390,126],"coauthors":[],"class_list":["post-37663","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-city","category-uncategorised","tag-campaigners","tag-cf","tag-cystic-fibrosis","tag-cystic-fibrosis-patients","tag-cystic-fibrosis-trust","tag-cystic-fibrosis-wales","tag-nhs-wales","tag-orkambi","tag-vertex","tag-welsh-government"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v25.2 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Patient considers move to England for life-saving drug - 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