Sarcoma UK welcomes the Government’s decision to pause a VAT policy that threatened to cut off some of the UK’s most seriously ill patients, including those with rare and life-threatening sarcoma cancers, from access to innovative treatments not yet available on the NHS.
Compassionate use and early access programmes are a vital lifeline for patients with life-threatening conditions, providing access to medicines that are proven to be clinically effective but have not yet been approved for funding on the NHS. For no cost to the NHS, pharmaceutical companies supply these medicines free of charge to eligible patients. For some people with rare cancers, these schemes are the only way to access potentially life-extending treatment.
Maddie Cowie, who has lived with alveolar soft part sarcoma that has spread to both lungs for over 10 years, knows this reality better than most. She said: ‘There are no approved treatments for my type of sarcoma in the UK, and so my survival is completely reliant on clinical trials and compassionate-use drugs. This has often felt very scary, lonely, and hopeless. From 2020 to 2024, I accessed compassionate treatment. When that stopped working, I started a clinical trial, and now that the trial is ending, I am due to start a new compassionate use treatment. I feel extremely grateful to have these options and a chance at living a full life. I hope the government make the right decision and ensure that compassionate use treatment is never subject to VAT. Life-saving treatment for me is already very difficult to access, and this rule could decide the fate of not just me but so many others facing a sarcoma diagnosis.’
Access to these schemes has come under threat since late last year, when HM Revenue & Customs began implementing the payment of VAT on drugs given free of charge, citing legislation dating back to 1994. In direct response to these increased costs, the German pharmaceutical giant Bayer suspended new patient enrolments under its UK compassionate use scheme, leaving new patients without access to life-extending drugs. Other pharmaceutical companies are likely to follow suit, stripping access to free and effective treatments to patients facing life-threatening conditions across the country. Leading oncologists have expressed fears of the devastating impacts of such a decision.
Sarcoma UK has been actively raising the alarm on this issue, engaging directly with key political figures in recent weeks. The charity met with several MPs to urge Government action and highlight the vulnerability of sarcoma patients, many of whom depend on early access schemes to receive treatments for which there are no licensed alternatives.
Sarcoma UK’s Chief Executive, Richard Davidson, said: ‘We are relieved that the Government has listened and has paused the application of these charges. We raised this issue urgently with MPs, and we are pleased to see that action has finally been taken. We now call on the Government to go further and confirm that free-of-charge medicines will never be subject to VAT. A pause is welcome, but it is not a solution. For sarcoma patients, compassionate access programmes are not a luxury; they can be the difference between receiving a potentially life-saving treatment and having no options at all.’
