Stop playing 'Russian roulette' over drugs

Published on Monday 19 January 2009 18:23

A PRESCRIPTION postcode lottery persists across Scotland, meaning some patients are denied life– prolonging treatments available elsewhere in the country, The Scotsman can reveal.

The Scottish Medicines Consortium (SMC) assesses new drugs and recommends whether they should be available on the NHS, taking into account their cost-effectiveness.

Information from health boards now shows that, even where drugs are not recommended, many boards agree to fund such treatments under special or "exceptional" prescribing measures. But the data also suggest some boards are much more likely than others to agree to exceptional funding.

NHS Ayrshire and Arran said it had approved 118 applications for non-recommended treatments since the start of 2007.

But other health boards authorised only a handful of non-recommended drugs, while some endorsed none at all.

Doctors and campaigners condemned the lack of transparency in how boards made decisions to fund expensive treatments.

The SMC, set up in 2001, makes recommendations on whether new treatments are cost-effective. NHS boards are expected to follow its guidance but can agree to fund drugs that are not recommended in exceptional circumstances. But the information received by The Scotsman suggests wide variations in boards' willingness to approve applications for non-recommended drugs.

The non-recommended drugs approved by NHS Ayrshire and Arran

include Sutent, for kidney cancer, Exubera – inhaled insulin for diabetes – and Lyrica, used for neuropathic pain. It also approved the use of Intrinsa, a testosterone patch used to treat women with a "low level of sexual desire".

During the same period, NHS Dumfries and Galloway said it had agreed to fund non-SMC-recommended drugs on 80 occasions but turned down 18 requests. Like Ayrshire and Arran, it approved the Intrinsa sex patch – but twice refused to fund the cancer drug Sutent.

Other areas had a much smaller number of approvals. NHS Borders said it had funded seven non-SMC-approved drugs since the start of 2007. The board said it had not refused any requests.

NHS Fife said it had approved six non-SMC-recommended drugs but did not provide details of what they were.

NHS Lanarkshire said it had approved non-SMC-recommended drugs 13 times. On seven occasions, it funded Revlimid (lenalidomide) for multiple myeloma, a cancer of the bone marrow.

NHS Forth Valley said it had approved three requests, including one prescription of Sutent for kidney cancer.

NHS Highland approved six non-SMC- recommended drugs, including Revlimid for multiple myeloma, but it twice refused to fund Sutent.

NHS Greater Glasgow and Clyde – Scotland's biggest health board – listed 20 drugs it agreed to fund, but was unable to say on how many occasions each was used since the start of 2007, or how many it had refused.

NHS Lothian also had problems working out the exact number of non-SMC- recommended drugs it had funded. Since 2003-4, four drugs had been approved after going to a full committee hearing, but the board said others would have been funded without going this far.

However, in the same period, NHS Lothian did refuse 30 requests for drugs, including several cancer treatments such as Sutent and lenalidomide.

NHS Grampian was also vague in its response. Since March 2008, it said fewer than five requests for non-recommended treatments had been refused. These decisions were appealed and the drugs were later funded by the board.

NHS Tayside gave a limited response, revealing that of three requests for Sutent and three requests for Nexavar – for liver cancer – received in 2007-8, none had been approved. But the board did approve one application for Erbitux for bowel cancer.

NHS Western Isles said it had approved one drug – Nexavar, used to treat liver and kidney cancer – but had refused two others, including Sutent.

NHS Shetland and NHS Orkney did not agree to fund any treatments.

The results prompted anger among campaigners, doctors and MSPs.

Ross Finnie, the Scottish Liberal Democrats' health spokesman, said: "This information points to a postcode lottery for access to drugs in Scotland. It is simply not fair that some patients can receive licensed, but yet-to-be health board approved, drugs free on the NHS, when just a few miles down the road, a similar patient is denied it purely because of the area in which they live."

Margaret Watt, of the Scotland Patients Association, said the variation in drug prescribing meant the NHS was playing "Russian roulette" with people's lives.

"It is a disgrace in this day and age that we have this postcode lottery," she said. "We also need to be looking at why these drugs are so expensive in the first place."

Professor Jim Cassidy, a bowel cancer specialist working in Glasgow, said doctors increasingly found themselves in a situation where they had to decide which patients were "exceptional" and which were not. "The system puts us in the driving seat to decide which patients for which it is worth applying for exceptional funding," he said.

"I will sit down with a patient and discuss with them that we can apply for funding, but it is unlikely it will be approved.

"Sometimes they will insist and, in those cases, I will apply. But mostly they accept what I tell them. It is better than raising someone's hopes for funding which you know they will not receive."

Karol Sikora, a cancer specialist based in London, said one solution to the problem might be to give doctors control of budgets to decide which drugs they want to pay for.

"You can't give everybody everything – most people accept that – but I think we have to get better at deciding who should get these treatments and avoid the wide variations we currently have," he said.

Dr Richard Simpson, Scottish Labour's public health spokesman, said health boards needed clear guidance on their policies for exceptional prescribing to avoid the variations seen in the statistics. "I think we need a national system for making these decisions, with clear and transparent guidance for the public," he said.

A Scottish Government spokeswoman said: "In relation to the availability of new drugs or their equivalents, NHS boards should take full account of the advice provided by the SMC and NHS Quality Improvement Scotland."

She added that the Scottish Government had set out guidance for exceptional prescribing for health boards.

Drugs turned down for NHS on grounds of cost

DECISIONS by the Scottish Medicines Consortium (SMC) on new drugs for the NHS are often controversial. Here are some examples of drugs the body has decided are not cost-effective – but which some health boards will fund in some circumstances:

&#149 SUTENT (sunitinib): The SMC rejected the drug – used to treat advanced kidney cancer – in February 2007, saying the "economic case has not been demonstrated". Sutent is among a group of four kidney cancer drugs not recommended in draft guidance from the National Institute of Health and Clinical Excellence (Nice) last year, but there have been reports this position could change. While Nice produces guidance chiefly for England and Wales, its decisions can also influence watchdogs in Scotland.

&#149 ERBITUX (cetuximab): Used to treat bowel cancer, the SMC rejected the drug in March 2005 saying "cost effectiveness has not been demonstrated". It is the drug that helped give Michael Gray (see panel, right), an extra five months of life after he decided to pay for it.

&#149 REVLIMID (lenalidomide): Used to treat multiple myeloma, a cancer of the bone marrow, this was not recommended by the SMC in May 2008. It said: "The manufacturer did not present a sufficiently robust case and, in addition, the manufacturer's justification of the treatment's cost in relation to its health benefits was not sufficient to gain acceptance by SMC."

&#149 INTRINSA (testosterone transdermal patch): Used for the treatment of "hypoactive sexual desire disorder", the patch was rejected by the SMC in September 2007. It said: "The manufacturer did not present a sufficiently robust economic analysis to gain acceptance by SMC."

'State funds only after we proved it worked'

WHEN cancer patient Michael Gray was refused funding for a drug to help prolong his life, his family did not sit back and accept the decision.

Mr Gray, of Buckie, Moray, and his wife, Tina McGeever, launched a campaign to help those denied treatments to help them live longer.

Mr Gray died in April last year, aged 53, but Ms McGeever said their decision to fund the drug recommended by his doctor helped give him five more months of quality life that the NHS would have denied him.

The case was investigated by the Scottish Parliament's public petitions committee, which agreed with Mr Gray's family and friends that the current decisions made by health boards on the funding of treatment lacked clarity and transparency.

Ms McGeever said that during their campaign they became aware of variations that meant if they lived in another part of the country they may have easier access to the drug Erbitux (also known an cetuximab) used to treat bowel cancer.

"It does not seem like any board has the same process in place to decide who should get the drugs and who should not," she said. "It is also a very long-winded process. We started fighting for the funding in November and we did not find out the decision until the start of February."

Mr Gray's case also raised concerns over the issue of co-payments – allowing patients to pay for part of their treatment privately while continuing to receive other NHS care.

Because the family found the money to pay for Erbitux – more than 15,000 for treatment lasting three months – they had to fund other care that would have ordinarily been free on the NHS. New guidance that will allow co-payments in some cases has now been issued to boards by the Scottish Government, meaning patients should not have to take on more cost.

Ms McGeever said that after three months of treatment that showed the drug was working, NHS Grampian agreed to provide funding.

"Michael had five extra months of good quality life," she said. "I will never, ever forget those times as we had so much to cram in that would have been denied if we had not been able to get the drug. But Michael always wanted this fight to be about more than just him and to highlight the inequity that exists across the country."

She added: "If we could not have found the money to pay for the start of that treatment we would never have been able to show that it worked and the board would not have funded it."

Ms Gray said boards should consider funding treatments in the early stages and stop if they do not work in order to best use their resources.