Hope Burosumab makes q big difference for Jim!

Thanks. Great job!

Great job guys! 👏

Burosumab has made a tremendous difference to our son's bone growth, pain levels and mobility throughout his teenage years, but when he reached eighteen and he stopped growing, it was withdrawn, and he is now back in the XLH treatment Dark Ages of Phosphate Sandoz and Alphacalcidol. So, in consequence; the negative impact this retrograde step has had on his pain levels and mobility is immediate, and it's increasing in severity. The advantages of the Burosumab treatment are actually being erased. Ironically, my partner, his Mum, has the monthly Burosumab injection, given here at home, via discretionary NHS Prescription, and administered by myself. We are currently hoping to get our son back on the monthly Burosumab injections through the Consultant at NGH Sheffield. Both my partner and son are under care of the same Consultant. SCH Sheffield were absolutely brilliant in their care of our son, from his diagnosis at six months of age right up to transfer to adult care at NGH Sheffield. That he is now in pain and debilitated because the Burosumab is discontinued seems to me to be incredibly nonsensical and an actual cruelty, as it reverses the good work of the Children's hospital Consultants. My partner, now forty eight years of age, was one of the first four patients in the UK to be diagnosed with XLH, way back in the 1970's. The positive impact that Burosumab has on her condition simply cannot be overstated! The Consultants and Doctors at the Sheffield hospitals are "the go-to" specialists for XLH in the UK, and they see patients with the condition from all areas of the UK. That a medicine which is clinically proven to actually REPAIR bone damage, rather than just slowing bone deterioration at best, is unavailable to adults with the XLH progressive age related bone degeneration is beyond ridiculous. That it is perhaps not considered viable due to cost is morally indefensible! I understand that it is available to adult XLH patients in the USA, under the name "Crysvita" - but to make it so available there has been a long, hard fought battle. NICE: get your act together, get your morals out of your wallet and license Burosumab for adults!

Great job Sally 👏