Sarcoma UK Policy Briefing 1 Best Care.pdfDownload
Getting patients treated by experts who have experience of treating and managing sarcomas is crucial. All patients with suspected or confirmed sarcoma must have their treatment agreed by a specialist multi-disciplinary team (MDT) at a sarcoma centre, sometimes jointly with age-appropriate teams or those that focus on a particular part of the body, to ensure they receive the most appropriate and best possible care.
Focus on the drug pazopanib
New treatments rarely come up for sarcoma, so for some soft tissue sarcomas, the results of the PALETTE trial were hugely promising. It considered the effect of a new drug, pazopanib, on survival after previous chemotherapy had failed. This is important, as earlier chemotherapies for these sarcomas have a maximum dose, and can cause severe side-effects. Despite pazopanib being shown to increase the time it takes for sarcoma to progress, the only nation in the UK with routine access is Wales. Specialist sarcoma doctors need access to the full range of clinically-effective treatments to ensure that sarcoma patients get the best possible care.
Why is this important?
- National guidelines state that patients with suspected or confirmed sarcoma must be cared for and have their treatment agreed by a sarcoma specialist multidisciplinary team (MDT), yet some sarcoma patients are still seen outside of this specialist setting and receive incorrect care.
- Three reasons why being treated at a sarcoma specialist centre over a non-specialist centre can have life-changing consequences:
- Not receiving a diagnosis from a specialist can lead to misdiagnosis and/or receiving the wrong treatment. Research from France shows that diagnoses from non-specialist centres which were later reviewed by expert sarcoma pathologists resulted in a major change in diagnosis in 20-30% of cases.
- Being treated by a non-specialised team increases risk of local recurrence. Specialist sarcoma surgeons are trained not to leave the patient with sarcoma cells in the edge of the tissue, reducing the chance of recurrence.
- Decisions made about treatment and care by a sarcoma specialist MDT at a specialist centre brings together the experience and knowledge of sarcoma experts to ensure all patients have the most appropriate treatments for their condition. Not having that knowledge could mean that patients who are not referred to a sarcoma specialist centre may not receive the same access to possible future treatments through clinical trials.
- New medicines for sarcoma are scarce, with many medicines currently used having been around for many years. However, even when new medicines do have successful clinical trial results; clinicians are still not able to access them.
- Technology appraisals for new medicines are not adequately set up to consider drugs for less common cancers like sarcoma. Due to the rarity of sarcoma, getting a large enough sample of patients to take part in a trial (meaning the data collected is a good representation of how the drug works) is problematic. Appraisals systems are not flexible enough to allow for uncertainty, so even when drugs are shown to work, they are not accepted for routine use on the NHS.
- Pharmaceutical companies do not feel incentivised to conduct research into new sarcoma drugs, under fear that even if the drug is successful, they will not recoup the money spent on its development.