{"id":159656,"date":"2025-11-10T16:12:00","date_gmt":"2025-11-10T16:12:00","guid":{"rendered":"https:\/\/www.kidneyresearchuk.org\/?p=159656"},"modified":"2025-11-13T13:20:20","modified_gmt":"2025-11-13T13:20:20","slug":"smc-approval-of-mercaptamine-procysbi-offers-new-hope-and-choice-for-people-living-with-cystinosis-in-scotland","status":"publish","type":"post","link":"https:\/\/www.kidneyresearchuk.org\/2025\/11\/10\/smc-approval-of-mercaptamine-procysbi-offers-new-hope-and-choice-for-people-living-with-cystinosis-in-scotland\/","title":{"rendered":"SMC approval of mercaptamine offers new hope and choice for people living with cystinosis in Scotland"},"content":{"rendered":"\n\n\t\t\n\t

In a landmark decision, the Scottish Medicines Consortium<\/a> (SMC) has today (10\u00a0November) accepted a new treatment – mercaptamine (brand name Procysbi) – for people in Scotland living with cystinosis<\/a>, a rare disease affecting about one in every 100,000 to 200,000 newborn babies.\u00a0<\/p>\n

The decision marks a pivotal moment for people – mainly children and young adults – living with cystinosis and their families by introducing a long-awaited choice in primary treatment in Scotland for the first time.\u00a0\u00a0<\/p>\n\t

What is cystinosis?<\/h2>\n

Caused by a genetic mutation, cystinosis results in the build-up of crystals of the amino acid cystine in the body’s cells.\u00a0 These initially form in the kidneys and eyes and later in muscles, pancreas, thyroid gland and white blood cells.\u00a0<\/p>\n\t\t\t\n\t\t\t\t\t\t\tFind out more\n\t\t\t\t\t<\/a>\n\t

What this means for patients<\/h2>\n

Mercaptamine (Procysbi) is taken every 12 hours. Previously, the only other treatment for cystinosis has been cysteamine (Cystagon), which must be taken four times daily – including a dose in the middle of the night – and has a huge impact on patients and their families as it also often leads to repeated vomiting.<\/p>\n

The approval of this 12-hourly delayed release formulation of mercaptamine means patients and carers can now choose whether this better suits their individual circumstances, lifestyles, and tolerability needs.<\/p>\n

“For years, Scottish patients have had no choice in how their condition is managed,” explained Alex Hutchison, a trustee at Cystinosis Foundation UK<\/a>. “The acceptance of this treatment both validates the lived experience of those who advocated for its inclusion and empowers families to make treatment decisions that reflect their daily realities. <\/p>\n

“This is great news for people living with this rare disease and their families.” explained Alison Railton, director of policy and public affairs at Kidney Research UK.\u00a0\u00a0<\/p>\n

“Having access to this treatment could make a meaningful difference, particularly for children and their parents. The twice-daily dosing means families no longer need to wake during the night, supporting a more consistent night’s sleep.\u00a0\u00a0<\/p>\n

“We believe everyone living with cystinosis should have access to the most effective treatments available to prevent them from developing kidney disease and eventually needing dialysis or a kidney transplant.”\u00a0<\/p>\n\t

A significant milestone<\/h2>\n

Laura Smith van Carroll, head of insight and advocacy at Metabolic Support UK<\/a>, said: “As an organisation founded by a family whose child was diagnosed with cystinosis, we understand firsthand the challenges that come with managing this rare and complex condition.” \u00a0<\/p>\n

“The approval of this treatment in Scotland marks a significant milestone for the cystinosis community, offering treatment choice, as well as the potential for improved quality of life of both those living with and caring for. \u00a0<\/p>\n

“We would like to thank everyone who participated in and helped disseminate the cystinosis survey, which was instrumental in providing SMC with clear, reliable evidence of the lived experience”.\u00a0<\/p>\n\t

Important information for patients\u00a0<\/strong><\/h2>\n

If you are prescribed a medicine for cystinosis, please speak to your healthcare professional about how best to manage your treatment. This article is intended to provide general information and does not replace medical advice.\u00a0<\/p>\n

If you experience any side effects, speak to your doctor, pharmacist or nurse. You can also report side effects directly via the\u202fhttps:\/\/yellowcard.mhra.gov.uk<\/a>. By reporting side effects, you help improve the safety of medicines.\u00a0<\/p>\n

 <\/p>\n

Kidney Research UK partnered with the Cystinosis Foundation UK and Metabolic Support UK in contributing to the SMC consultation process.\u00a0<\/p>\n\t\t\t\t\"Kidney

Have you been diagnosed with kidney disease?<\/h2>\n

Request your free Kidney Kit today.<\/p>\n

You’ll find tips and support from kidney patients, delicious recipes, simple exercise plans and more.<\/p>\n\t\t\t\n\t\t\t\t\t\t\tGet your free Kidney Kit\n\t\t\t\t\t<\/a>\n\t\t

Why not make a donation now?<\/h2>\n\t\t

Every \u00a3 counts towards transforming treatments for people living with kidney disease.<\/p>\n\t\t\t\n\t\t\t\t\t\t\tDonate now\n\t\t\t\t\t<\/a>\n\n","protected":false},"excerpt":{"rendered":"

In a landmark decision, the Scottish Medicines Consortium (SMC) has today (10\u00a0November) accepted a new treatment – mercaptamine (brand name Procysbi) – for people in Scotland living with cystinosis, a rare disease affecting about one in every 100,000 to 200,000 newborn babies.\u00a0 The decision marks a pivotal moment for people – mainly children and young…<\/p>\n","protected":false},"author":3,"featured_media":159660,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_searchwp_excluded":"","footnotes":""},"categories":[410,309,29],"tags":[],"class_list":["post-159656","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-cystinosis","category-policy","category-research"],"acf":[],"yoast_head":"\nApproval of mercaptamine for cystinosis patients in Scotland<\/title>\n<meta name=\"description\" content=\"Scottish Medicines Consortium has accepted a new treatment 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