{"id":12148,"date":"2026-01-23T11:14:04","date_gmt":"2026-01-23T11:14:04","guid":{"rendered":"https:\/\/www.kkltrust.org\/?p=12148"},"modified":"2026-03-30T11:29:30","modified_gmt":"2026-03-30T11:29:30","slug":"people-with-sickle-cell-disorder-celebrate-new-nhs-treatment","status":"publish","type":"post","link":"https:\/\/www.kkltrust.org\/?p=12148","title":{"rendered":"People with sickle cell disorder celebrate new NHS Scot\u00adland treatment"},"content":{"rendered":"\t\t
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PEOPLE liv\u00ading with sickle cell dis\u00adorder have praised a decision by NHS Scot\u00adland to approve a ground\u00adbreak\u00ading gene ther\u00adapy treat\u00adment.<\/span><\/p>

After months of delib\u00ader\u00ada\u00adtion, the Scot\u00adtish Medi\u00adcines Con\u00adsor\u00adtium ( SMC) has approved the use of exagam\u00adg\u00adlo\u00adgene auto\u00adtem\u00adcel ( brand name Cas\u00adgevy) to treat people with the chronic blood dis\u00adease.<\/span><\/p>

The gene ther\u00adapy has been accep\u00adted for patients who are older than 12 and are able to have a stem cell trans\u00adplant, but do not have a suit\u00adable donor.<\/span><\/p>

Patrick Eneche, who has lived with sickle cell for more than 40 years, said that the SMC\u2019s decision was a \u201cgreat achieve\u00adment\u201d.<\/span><\/p>

Eneche said: \u201cThere was a lot of excite\u00adment this morn\u00ading. This is good news and a big relief, as someone who has lived with the dis\u00adorder for 40 years.<\/span><\/p>

\u201cIt\u2019s been a chal\u00adlenge to have a very great life, as sickle cell comes with a lot of pain and affects men\u00adtal health, and you have to spend a lot of time in hos\u00adpital.<\/span><\/p>

\u201cIt is a very good thing, I hope to explore it to see how it bene\u00adfits us.\u201d<\/span><\/p>

Around 400 people are believed to be liv\u00ading with sickle cell dis\u00adorder in Scot\u00adland, many of whom are of African or Carib\u00adbean des\u00adcent.<\/span><\/p>

Accord\u00ading to the char\u00adity Anthony Nolan, the genetic dis\u00adorder affects the shape of red blood cells, which sub\u00adsequently get stuck in small blood ves\u00adsels, lead\u00ading to severe pain and organ dam\u00adage.<\/span><\/p>

The Cas\u00adgevy treat\u00adment extracts and mod\u00adi\u00adfies a patient\u2019s blood stem cells, allow\u00ading the cells to pro\u00adduce healthy red blood cells.<\/span><\/p>

Formerly, stem cell trans\u00adplants from donors were the only cur\u00adat\u00adive treat\u00adment avail\u00adable for people with sickle cell dis\u00adorder, but the new treat\u00adment opens the door to relief for those who are unable to find a match.<\/span><\/p>

Christine Membi is the project man\u00adager of The Hope Project Scot\u00adland, a Glas\u00adgow- based char\u00adity that raises aware\u00adness about the dis\u00adease and advoc\u00adates for people liv\u00ading with sickle cell dis\u00adorder.<\/span><\/p>

The group also organ\u00adises cook\u00ading classes, bowl\u00ading excur\u00adsions and other activ\u00adit\u00adies for com\u00admunity mem\u00adbers.<\/span><\/p>

She said that the decision could \u201cchange everything\u201d for those with sickle cell dis\u00adorder in Scot\u00adland.<\/span><\/p>

\u201cThe life\u00adstyle will change, as will the time spent on hos\u00adpital vis\u00adits and the day- to- day chal\u00adlenges,\u201d Membi said. \u201cPeople do not think about how sickle cell affects the fam\u00adil\u00adies of people with the dis\u00adorder.\u201d<\/span><\/p>

She added: \u201cWe are happy they actu\u00adally approved it. It is a big deal. This is something for us and they are actu\u00adally look\u00ading at us.<\/span><\/p>

\u201cIt is a good thing that the Scot\u00adtish Gov\u00adern\u00adment has approved it for use, but we will con\u00adtinue to make sure people can access it.\u201d<\/span><\/p>

While the on- off gene ther\u00adapy has a list price of \u00a3 1.65 mil\u00adlion per patient, the NHS in Eng\u00adland reportedly nego\u00adti\u00adated a con\u00adfid\u00aden\u00adtial dis\u00adcount when it was approved for use last year. Speak\u00ading about the sickle cell com\u00admunity in Scot\u00adland, Eneche said: \u201cIt\u2019s a close com\u00admunity. We come together and do reviews and meet\u00adings, but we also find a way to have leis\u00adure time and make things easier.\u201d<\/span><\/p>

Membi added: \u201cWe will con\u00adtinue to cam\u00adpaign to let people know. Many people don\u2019t know about sickle cell and how it affects people.\u201d<\/span><\/p>

In a joint press release with Anthony Nolan, Olalekan Oyedepo, who lives with sickle cell dis\u00adorder and is co- founder and project coordin\u00adator at The Hope Project Scot\u00adland, added: \u201cWe wel\u00adcome today\u2019s decision by the SMC to approve Cas\u00adgevy gene ther\u00adapy for sickle cell dis\u00adease patients in Scot\u00adland … Today\u2019s decision shows what\u2019s pos\u00adsible when health sys\u00adtems recog\u00adnise the needs of sickle cell patients.<\/span><\/p>

\u201cNow we must ensure that this recog\u00adni\u00adtion extends to com\u00adpre\u00adhens\u00adive care pro\u00advi\u00adsion. Scot\u00adland\u2019s sickle cell com\u00admunity deserves noth\u00ading less.\u201d<\/span><\/p><\/div><\/div><\/article><\/div><\/section><\/div><\/div><\/div><\/div><\/div><\/section><\/div><\/div><\/div><\/div><\/div>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t

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PEOPLE liv\u00ading with sickle cell dis\u00adorder have praised a decision by NHS Scot\u00adland to approve a ground\u00adbreak\u00ading gene ther\u00adapy treat\u00adment. After months of delib\u00ader\u00ada\u00adtion, the Scot\u00adtish Medi\u00adcines Con\u00adsor\u00adtium ( SMC) has approved the use of exagam\u00adg\u00adlo\u00adgene auto\u00adtem\u00adcel ( brand name Cas\u00adgevy) to treat people with the chronic blood dis\u00adease. The […]<\/p>\n","protected":false},"author":1,"featured_media":12149,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"elementor_theme","format":"standard","meta":{"footnotes":""},"categories":[1],"tags":[],"class_list":["post-12148","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-uncategorized"],"yoast_head":"\nPeople with sickle cell disorder celebrate new NHS Scot\u00adland treatment - Kevin Kararwa Leukaemia Trust<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.kkltrust.org\/?p=12148\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"People with sickle cell disorder celebrate new NHS Scot\u00adland treatment\" \/>\n<meta property=\"og:description\" content=\"PEOPLE liv\u00ading with sickle cell dis\u00adorder have praised a decision by NHS Scot\u00adland to approve a ground\u00adbreak\u00ading gene ther\u00adapy treat\u00adment. After months of delib\u00ader\u00ada\u00adtion, the Scot\u00adtish Medi\u00adcines Con\u00adsor\u00adtium ( SMC) has approved the use of exagam\u00adg\u00adlo\u00adgene auto\u00adtem\u00adcel ( brand name Cas\u00adgevy) to treat people with the chronic blood dis\u00adease. 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After months of delib\u00ader\u00ada\u00adtion, the Scot\u00adtish Medi\u00adcines Con\u00adsor\u00adtium ( SMC) has approved the use of exagam\u00adg\u00adlo\u00adgene auto\u00adtem\u00adcel ( brand name Cas\u00adgevy) to treat people with the chronic blood dis\u00adease. 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