Dad denied liver drug may never see his daughter grow up

Stelios Savva has a very rare liver condition and needs an expensive medicine which the NHS is refusing to give him - despite it being prescribed for overseas patients by his own consultant.

Speaking to the Chad at the home he shares with his partner Cara Morris, Stelios, 32 fears he will not see their three-year-old daughter Sienna grow up.

He said: “I’m currently awaiting a liver transplant. Within two years I will spend the rest of my life unable to walk. Within three years I will most probably be dead.”

He was devastated when he was told the NHS would not fund the only life saving medication for his genetic condition, Tafamidis.

Stelios would need to take one pill a day to stabilize his condition and they would cost the NHS £600 each.

He said: “As well as a liver transplant, my liver consultant recommended we apply for an individual funding request for Tafamidis.

“This drug is fully licensed for use in Europe and is provided by the health systems of many European countries including Portugal, France, Germany, Spain, Italy and Cyprus.

“My consultant Professor Newsome has previously prescribed this drug to private Cypriot patients who have come to the UK for liver transplants fully paid for by the Cyprus Government.”

Mansfield and Ashfield Clinical Commissioning Group (CCG) Chief Nurse, Elaine Moss said: “We can appreciate how devastating it must be for Mr Savva that the treatment has been refused. As commissioners we have a responsibility to our population to ensure that the best services and treatments are accessible to all our patients using the financial resources available to us.

“In this particular case, an individual funding request was considered by a specialist panel taking into account the individual circumstances; and a decision was made based on a range of clinical and cost effectiveness measures. Having reviewed Mr Savva’s case, using these criteria, we have unfortunately been unable to fund this treatment.

“As the CCG does not have a policy for the use of Tafamidis, the panel discussed the recommendations made by the former Advisory Group for National Specialised Services that Tafamidis should not be routinely commissioned nationally for the treatment of familial amyloid polyneuropathy (FAP).”