Cancer crisis as patients beg for their lives

Cancer experts blast SNP’s failure over pledge to stop drugs postcode lottery.

Cancer patients are forced to “beg for their lives” despite a promise to end the postcode lottery for vital drugs.

The country’s most senior cancer specialists have warned SNP ministers a promised relaxation of complex rules on accessing expensive medicines not yet officially approved has failed to result in more patients getting help.

Health Secretary Alex Neil announced a fairer system to replace the controversial individual patient treatment request (IPTR) process last October and vowed no patients would be disadvantaged in the transition period.

But a group of consultants at the Beatson Oncology Centre in Glasgow, which serves more than half of Scotland, have revealed it has been “business as usual” with lifesaving treatments still regularly being rejected.

The consultants claim the “injustice” for their patients is that other health boards across the country have increased the number of medicines they dish out under IPTR.

Patient groups last night threw their weight behind the consultants.

The warning comes as questions have been raised over funding for the new approval system for rare drugs as experts admitted it could cost up to £50 million more than first expected. Labour MSP Duncan McNeil, convenor of Holyrood’s health committee, said: “This is very worrying. It appears that patients are being denied medicines that they would be receiving if the new system were in place.”

Dr Jean Turner, executive director of the Scottish Patients Association, added: “We were promised changes to the system but it is clear from this letter that people are still having to beg for their lives to try and get these drugs, it is a heartbreaking situation for the patient, their families and clearly their doctors.”

Patients currently have to apply for drugs not approved for widespread use by the Scottish Medicines Consortium (SMC) on a case-by-case basis by submitting an IPTR.

A new clinician-led approach, which is hoped will help 1,500 people a year, is meant to come into force in May and is designed to end the much-criticised postcode lottery of treatment decisions.

Just after the change was announced last year, Chief Medical Officer Sir Harry Burns wrote to health board chiefs and said: “The Scottish Government does not think that it is acceptable for these patients to be disadvantaged.”

Sir Harry added that IPTR panels should “exercise flexibility in their decisions” to reflect the new system coming into place and added the previous requirement for “exceptionality” should not be a factor in deciding cases.

However, in a letter to Holyrood’s health and sport committee the Beatson Oncology Centre Consultant Committee said access to the drugs remains “highly problematic”.

It stated: “We have seen no evidence of any difference in approach to date. None of us is aware of patients who have had these medicines approved for use in circumstances where they would previously have been rejected.

“Colleagues in oncology departments elsewhere in Scotland report that their access to these medicines has improved since November 2013.

“We are concerned that despite the suggestions from Scottish Government that the system of application requesting use of these medicines is now less restrictive and access to these drugs is more open, our local experience is that the system remains inflexible, opaque and unfit for purpose.”

Giving evidence to the health committee last week, the SMC said it was still awaiting £1m of funding needed to get the new system up and running.

The new licencing approach was estimated to cost up to £70m when it was first unveiled but it has also been revealed that an extra £50m could be needed if all of the pharmaceutical firms which have had new medicine applications rejected in the past, resubmit their applications and are successful.

A Scottish Government spokesman said: “We are committed to improving access to new medicines for patients.”

The agony faced by those rejected under the IPTR system is well known to Lesley Loeliger, who suffers from a rare blood disease and runs a support group for others affected by Paroxysmal Nocturnal Haemoglobinuria (PNH).

The mum of two from Newton Mearns explained: “I have sat in my patient group with two patients one who was on her knees and another who was racing back to go to work.

“The second patient asked the first patient, “Why are you well and I’m not?” and he said, “I’m not in your health board.” That was it. “This is why IPTR is not right and needed changed.

“We are moving to the new system which everyone is agreed on but we still don’t understand how it will work.” Mrs Loeliger was diagnosed with PNH in 2005 with the condition leaving her utterly exhausted to the point where she had to be carried to bed every night.

She was initially given the traditional treatment, blood transfusions every four to eight weeks, but eventually NHS Greater Glasgow and Clyde funded the drugs needed to treat PNH, which affects just 30 people across Scotland.