Lottery of care for Scottish cancer patients

Cancer patient Janice Glasswell, husband Alan, and son Aidan. Photograph: Robert Perry
Cancer patient Janice Glasswell, husband Alan, and son Aidan. Photograph: Robert Perry
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JANICE Glasswell was diagnosed two years ago with bowel cancer and has already undergone two operations as well as chemotherapy and radiotherapy. But the disease has now spread to her liver and lungs and 44-year-old Janice has applied for a course of a drug called Cetuximab through an individual patient treatment request (IPTR).

Despite meeting the criteria, she is not hopeful of securing the life-prolonging drug. “My oncologist said, ‘I doubt very much if we’ll get anywhere with it’,” she said.

Screening confirmed her condition is the type that would be expected to respond to Cetuximab. She has also kept herself as fit and healthy as possible, making her a prime candidate for treatment.

“He [her specialist] said they have been sending these forms away and they’ve been coming back rejected for people who should fit the criteria.”

A course of Cetuximab costs around £2,000 per month to fund privately and some patients can be on it for years.

Glasswell, who lives in Darvel, Ayrshire, with nine-year-old son Aidan and husband Alan, said she found the system that decides who should get the treatment on the NHS “ridiculous”.

She needed NHS support because there was no way her family could afford the cost. “If it was a one-off, or you were only going to be [on it] for four months and you knew it was going to be so helpful, you would do it,” she said.

“But there’s no way I would put me or my family into that kind of debt, because I just don’t know what’s going to happen to me. I wouldn’t leave that kind of burden to my family.”

Cetuximab came to prominence in Scotland four years ago, following a petition at Holyrood raised by cancer patient Mike Gray, from Buckie, Moray, who died while MSPs were considering his case.

NHS Grampian had argued Cetuximab would not be cost effective, but later agreed to pay for the drug. It was later approved by the Scottish Medicines Consortium (SMC) for bowel cancer cases, although not for other conditions. Which patients qualify for it remains a lottery.

MSPs have decided to hold an inquiry this week after a series of petitions were submitted to the Scottish Parliament calling for changes in the system of individual patient requests for rare cancers and other diseases. In a recent report, the Rarer Cancers Foundation found that there were 23 cancer treatments which were not routinely available in Scotland, with English patients three times more likely to gain access to newer drugs than patients in Scotland.

The cost of drugs in Scotland for 2010/11 was in the region of £1.3 billion, which represents approximately 12 per cent of total NHS Board expenditure.

In its own submission to the committee, the Scottish Government says it is committed to patients in Scotland receiving medicines of “established cost-effectiveness and therapeutic value”.

Ministers say that the SMC appraises all new medicines as soon as possible following 
licensing and aims to issue 
advice to NHS Boards on their clinical and cost-effectiveness within 18 weeks of receipt 
of the company submission. “These timelines (are) among the fastest of any country in the world undertaking medicines appraisals,” the Government submission says. It 
is then up to health boards 
to decide on financial priorities.

In relation to new medicines not approved by the SMC, it has introduced the IPTR system, in which doctors can submit requests on behalf of patients who fit the treatment criteria. But official claims that the IPTR system is working in Scotland are also challenged by the Macmillan Cancer Support charity in its submission to the health committee.

“The Government continually states that if the Scottish Medicines Consortium does not recommend a treatment, the patient may be able to 
access it through the IPTR process which for most people is incorrect,” the organisation states. “This misconception has led to confusion and disappointment for patients.”

The James Whale Kidney Cancer Fund, in its submission to the charity, suggests that rather than leaving decisions on IPTRs to health boards, there should be a “centrally-governed process for the assessment and funding” of the system.

“The Committee will be well aware of the feelings of inequality felt by many cancer patients in Scotland who see their counterparts south of the border gaining access to treatments not recommended by the SMC through the CDF. We can confirm that this is a view held by many of the kidney cancer patients with whom we discuss these matters.

“Whilst we understand that a CDF in Scotland might not be the solution, it is essential that kidney cancer patients undergoing great deals of anxiety and distress feel that, at the very least, there is sufficient Health Board funding available for approved IPTRs and that the IPTR process is fair across the whole of Scotland. We are concerned about reported inconsistencies across different Health Boards in numbers of IPTRs being submitted by clinicians and approval rates of IPTRs.

“Whatever the reasons, this inconsistency needs to be investigated in detail by the Committee.”