Sarcoma UK is disappointed to see that life extending cancer drug trabectedin (Yondelis) will not be made available routinely on the NHS to sarcoma patients in Scotland.
Trabectedin, a chemotherapy drug which has been routinely available in the rest of the UK for over a decade, has been denied approval for regular use in Scotland by the Scottish Medicine Consortium.
This means that patients who are unable to use or have already received other chemotherapy drugs, such as doxorubicin, will have to go through a separate approval process to access further chemotherapy, where access is not guaranteed.
Trabectedin is used to treat advanced soft tissue sarcoma (STS) which is a cancer that can develop in muscle, fat, blood vessels, or any of the other tissues that support, surround and protect the organs of the body. It can also be used to treat other cancers, such as recurring ovarian cancer, when treatment with certain other types of chemotherapies have stopped working, or where patients cannot be given these medicines. It works by altering DNA cells in tumours which stops them being able to grow, develop and spread.  This drug is used to extend and enable a better quality of life while patients are being treated for sarcoma.
Sarcoma is an uncommon cancer that can affect any part of the body, on the inside or outside, including the soft tissues, such as muscles, tendons, blood vessels and fatty tissues, or the bone. Sarcoma accounts for 1.3% of all cancers in the UK and approximately 15 people are diagnosed every day. Currently, because of the lack of effective treatment options, only 55% of people survive beyond five years.
Richard Davidson, Chief Executive of Sarcoma UK, said that ‘It’s incredibly disappointing to hear that sarcoma patients in Scotland will not have access to the same treatment options as those in the rest of the UK. For cancers like sarcoma where the number of drugs and treatment options are already limited, we cannot afford for something simple like where a patient lives in to be a limiting factor when it comes to accessing treatment and care.’
‘A diagnosis of sarcoma can be devastating for patients and their loved ones and patients have the right to access the most appropriate evidence-based care for them ’
Lyn, who has received trabectedin for nearly two years as part of her treatment for leiomyosarcoma, said: ‘Since starting trabectedin, I feel as if I have been given my life back, as I can cope so much better with this treatment than any of the others. It makes so much difference to how you live your life, I’ve gone from patient back to wife, and my husband is no longer just a carer.
‘Now I get out and about seeing people, doing the shopping, and I’m beginning to plan a little bit more in advance now, like going away on holiday. I can also lose myself in the garden which is wonderful.’
Sarcoma UK is committed to helping people with sarcoma access the most effective treatments for their cancer and represented the views of sarcoma patients throughout the review process for trabectedin, including at the Patient and Clinician engagement stage of the appraisal.