A YOUNG father of two from Heath End is battling Surrey Primary Care Trust over its refusal to fund the drug he sees as his only chance of life after his current medication started to fail. Craig Welch, 38, who suffers from a rare cancer that has caused liver tumours, believes he is a victim of the type of 'postcode lottery' highlighted last week by Farnham's MP Jeremy Hunt. For the family was told on the Friday before Christmas that the PCT is refusing to pay for the new drug Sumniteb, which Craig's consultant at the Royal Marsden Hospital in Chelsea has requested should be funded for him. The case is set to be re-examined by an appeal panel next Wednesday and Craig has been advised by the Royal Marsden Hospital that his appeal stands a 50:50 chance. The PCT argues that there is limited clinical evidence to support the use of this drug in his situation, but Craig's wife, Georgina, said that in some other areas, the drug has been paid for in similar cases. "Some PCTs have decided to fund it, while many have not, leading to renewed cries of 'postcode lottery' from patients and their families. This certainly seems true in our case. "This drug is Craig's only chance and obviously the sooner he recieves it the better. "We never believed that we would be subjected to this and are angry to be caught up in this bureacracy." The appeal is particularly critical for Craig, who suffers from GIST (gastro intestinal stromal tumours) as the drug Glivec, which has controlled his illness for five years, is no longer working and the disease has progressed. Without the new drug, the couple say the PCT is effectively withdrawing treatment when his current prescription runs out. And withdrawal of Glivec has tended to accelerate the cancer in patients with the same condition. Craig's hope is that the new drug could buy him the time to take advantage of new treatments being developed all the time. "Getting me on this new drug would have the same effect as Glivec has had up until now - ultimately for me to continue living." Georgina said Craig's consultant at the Royal Marsden, Prof Ian Judson, has had a great deal to do with the trial of Sumniteb - a trial which finished seven months early because it was so successful - and the drug is now being used worldwide. "People are giving money to Cancer Research, Cancer Research is giving it to people like Prof Judson to develop new drugs but then these drugs are being withheld from people. "It isn't a National Health Service because we are not being given the same level of care as other people might be, purely because of where we live." Craig, a former pupil at Hale and Heath End schools, first became ill six years ago, but the couple say it took more than a year for the diagnosis at Frimley Park Hospital of a bowel tumour. Having lost six stone and been sent "here, there and everywhere for some awful tests", he eventually turned up at A & E one Sunday afternoon when he was unable to keep any liquids down, was scanned and diagnosed. "Had they found the tumour and put Craig through a CT scanner earlier, then we probably would not have been in this position now," said Georgina. The 36-year-old former Miss Farnham, who works at Hale School and has put her teaching degree on hold, is a redoubtable campaigner on her husband's behalf. "Christmas Day was spent sending out emails to friends and family, asking them to email Jeremy Hunt," she recalled. Their eldest son Oliver, 11, was among those whose lobbying convinced the South West Surrey MP to back their case. "Craig has all of Farnham rooting for him, and rightly so," said Mr Hunt. "The new drug he wants could make a real difference to his quality of life and is only a little more expensive than the drug he is currently receiving. "If ever there was a case of a bureaucratic system needing to show some flexibility and humanity it is this one. We must continue to fight for Craig's medicine every step of the way." He has written to the chief executive of the PCT, Chris Butler, to urge him to reconsider Craig's case urgently and spoke to the head of medicine management at the PCT directly last week to reiterate his concerns. Following that conversation, he has sent a letter that he hopes will influence the Appeals Board next Wednesday. The comparative costs are understood to be around £33,000 a year for Sumniteb, against £28,000 for Craig's current drug, Glivec. But fundraising by family and friends to pay for the new medication has not been an option because of the national policy, confirmed by the PCT, that patients must be either NHS or private. "If we pay for the drug we will have to pay for all of Craig's treatment including blood tests, CT scans, appointments etc. which could amount to a very large sum of money," Georgina explained. In a statement, Surrey PCT has commented: "We understand what a difficult and stressful time this is for Mr Welch and his family, but it's important to understand that there is currently limited clinical evidence to support the use of this drug in this situation and no published guidance from the National Institute for Clinical Effectiveness (NICE). "We need to be confident that patients are treated with drugs that are clinically effective and have a positive impact on their condition and quality of life." Director of Public Health for the PCT, Dr Ruth Milton, added: "I would like to stress that we take every patient's individual circumstances and clinical merits into account in any funding application and subsequent decision. "Of course we fully appreciate and understand the distress Mr Welch and his family are going through, but we have to follow due process to ensure a fair and equitable solution is reached that is in the patient's best interests." Surrey PCT said it has funded the drug in the past "in different clinical circumstances as part of its process for considering each patient's clinical needs individually. "As with all funding requests, if the patient or family appeals against the PCT's decision, we reconvene a separate panel to re-examine the evidence." "If the appeal fails, we will not just go away," said Georgina. "We would have to seek legal advice. The hard thing is that we don't have time on our side."
