PATIENTS in Scotland with a rare and deadly form of liver cancer will be the first in the UK to get routine access to a life-prolonging drug on the health service.
Campaigners have welcomed the decision to make sorafenib - brand name, Nexavar - available on the NHS to patients in Scotland, but stressed that the favourable ruling by the Scottish Medicines Consortium highlighted a postcode lottery over treatment which leaves patients in England, Wales and Northern Ireland spending thousands to buy the drug privately.
It had also previously been rejected by the Scottish drugs watchdog on cost grounds in 2010 but has now been approved under the Patient and Clinician Engagement (PACE) process.
Sorafenib is the only medicine on the market to treat a rare form of liver cancer known as hepatocellular carcinoma, which currently affects around 138 people a year in Scotland with cases forecast to rise to 160 by the end of the decade.
The average age of death for patients diagnosed with the condition is 58. Fewer than a third of patients are diagnosed with the disease when it is still possible that they could be cured through medical intervention, and the majority are given only a few months to live.
However, sorafenib - which will cost £18,600 per 25 week course - has been shown in clinical trials to extend survival by an average of 12 weeks and improve quality of life.
It is also taken in a pill form, twice a day, which the SMC concluded would "[reduce] the burden for patients and carers associated with clinic attendance for administration of treatment".
In a statement, the British Liver Trust, a charity which submitted evidence to the SMC in support of the drug, said it was "delighted with the result".
The statement continued: "Currently there is no other treatment available and this medicine helps improve the quality of their life and alleviate some of the symptoms. The average age of death for people suffering from the condition is only 58 and so any increase in length of life is very important.
"However the decision provides another example of the inequalities of NHS care that can exist between the devolved countries. NICE, the SMC’s equivalent in England rejected the use of Sorafenib in 2010."
Andrew Langford, chief executive of the British Liver Trust, added: “Whilst it’s fantastic news that the Scottish Medicine Consortium has today agreed to the use of sorafenib, the decision highlights a two tier system where patients in England are denied access to this treatment that can improve their end of life care.”
The drug is also unavailable in Wales and Northern Ireland, although the Welsh authorities are currently reviewing their position with a decision expected in February.
Sorafenib was one of five drugs approved for use by the SMC. The watchdog also gave the go ahead for tolvapta, brand name Jinarc, to be made available to patients with a rare disorder known as Autosomal Dominant Polycystic Kidney Disease (ADPKD). Tolvapta is the only licensed treatment available which can slow the rate of decline in kidney function and delay the need for kidney dialysis.
The Committee also approved netupitant/palonosetron (Akynzeo), a combination of two medicines which can be used to prevent and treat nausea brought on by cancer chemotherapy, and two injectable medicines for the treatment of type 2 diabetes - dulaglutide (Trulicity) and albiglutide (Eperzan).
Professor Jonathan Fox, chairman of the SMC, said: “I am pleased the Committee has been able to accept these five medicines for routine use in NHSScotland. We know from the testimony given by patient groups and clinicians at the PACE meetings that sorafenib for liver cancer and tolvaptan for ADKPD will be welcomed. The patient group contribution played an important part in helping the Committee reach its decisions on these medicines.”
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