VHL UK/Ireland is delighted to hear the wonderful news from the SMC today, that certain qualifying VHL patients in Scotland will be the first in Europe to be able to freely access the ‘game-changing’ new drug, belzutifan (Welireg), via the NHSScotland.
This is a truly significant day, as belzutifan (Welireg) fulfils a huge unmet need for these VHL patients who until now, have had no medical treatment options. Instead, they face repeated, multiple, high-risk surgeries, often on multiple organs in their bodies including the brain, spine, kidneys, and pancreas, which often have life-changing and sometimes life-threatening consequences.
By reducing the number of high-risk surgeries, belzutifan (Welireg) has the potential to improve not just a patient’s physical outcomes but prolong their life and in some cases save their life. Having such a devastating condition not only affects every aspect of a patient’s life and well-being but also the life of their carer(s). At last, they will have a choice about what risks they take in respect of their condition and much hope for the future.
VHL UK/Ireland would like to thank the Scottish Medicines Consortium (SMC) for its clear guidance and its rapid and patient focussed appraisal process; the excellent contributing clinicians; and Action Kidney Cancer for their expert insights and support.
We now wait with anticipation, for the outcome of the ongoing National Institute for Health and Care Excellence(NICE) appraisal, with hope for VHL patients in England and the rest of the UK and we thank MSD for their tireless efforts in this process.
Graham Lovitt
Chair – VHL UK/Ireland
