Sarcoma UK and GIST Cancer UK welcome today’s decision by NICE to approve Ripretinib (Qinlock®) for use within NHS England, providing a crucial treatment option for patients with advanced gastrointestinal stromal tumours (GISTs) who have exhausted three or more prior kinase inhibitor treatments.
Ripretinib, developed by Deciphera Pharmaceuticals, will provide a vital fourth-line treatment option for GIST patients after they have exhausted the currently available three lines of therapy (imatinib, sunitinib and regorafenib). Clinical evidence indicates that Ripretinib can both extend life and improve quality of life for patients with reduced side-effects compared to existing treatments.
Both Sarcoma UK and GIST Cancer UK have actively participated in the NICE appraisal process, submitting written evidence about patient experiences and supporting the case for approval throughout.
Richard Davidson, Chief Executive of Sarcoma UK, said: ‘We are delighted that NICE has made this positive recommendation, which is excellent news for GIST patients in England who have had very limited treatment options after progressing through the three currently approved therapies. Ripretinib offers real hope for extended survival with fewer side-effects. After exhausting existing treatments, these patients may have just weeks to live. This treatment can provide both extended survival and improved quality of life for patients with a rare cancer like GIST.
‘Sarcoma UK’s 2020 National Sarcoma Survey found that 95% of GIST patients reported that their diagnosis and treatment negatively affected their mental health and emotional wellbeing. A fourth-line treatment option will provide not just physical benefits but crucial psychological support in knowing that further options exist.’
Nic Puntis, Chair of GIST Cancer, said: ‘People with GISTs experience significant challenges with existing treatments, including severe side-effects that often require dose reductions, treatment resistance that develops over time, and disease progression. Knowing there is now an approved fourth-line treatment available in England and Wales will help give people with a GIST diagnosis more hope than having to rely solely on the limited treatments that have existed until now.
‘This is fantastic news for the whole GIST Community, and I would like to express my gratitude to the patients and medical professionals who contributed to the NHS Appraisal, which finally approved Ripretinib. GIST Cancer UK supports and represents a community of patients, some of whom were relying on this positive outcome in order that they might enjoy a fulfilling life for longer.’
Cathy Hampshire, 63, from West Yorkshire, is Vice-Chair of GIST Cancer UK and has lived with GIST cancer for five years. She underwent major abdominal surgery in October 2021 to remove a large tumour. About two years later, the cancer returned and spread to her liver and other areas of her bowel.
Cathy has since tried all three currently available treatments. She reacted badly to Imatinib, the standard first-line therapy, and experienced the same difficulties with Sunitinib. She is now on Regorafenib, the last treatment option currently available – which she has been taking for two-and-a-half years.
‘Regorafenib has a limited window of effectiveness,’ she explained. ‘At every scan and every consultation, I brace myself for the moment I’m told the drug has stopped working, that the tumours are growing again and that there is no further treatment options left. Today’s NICE decision changes that picture entirely. I was literally dancing around the room when I heard. When you’re on the third of the three available treatments and been told there are no more options, you feel like the system has given up on you. After a two-year battle, NICE has recognised the importance of making Ripretinib available. For people like me across England and Wales, this opens up a new treatment pathway and with it, renewed hope. I feel as though a huge weight has lifted from my shoulders. For the first time in a long while, there is light at the end of the tunnel.’
GIST is the most common form of soft tissue sarcoma with 600 people diagnosed in the UK each year. These tumours develop in the gastrointestinal tract and can cause symptoms including fatigue, pain and bleeding.
Ripretinib was approved for medical use in the United States and Australia in 2020 and in the European Union in 2021. It was also approved by the Scottish Medicines Consortium in August 2025 for use within NHS Scotland.
