More MS news articles for May 2001

Patients left to suffer while quango delays

13 May 2001
By Camillo Fracassini

DESPITE the huge strides that have been made in the treatment of Multiple Sclerosis, thousands of patients in Scotland are still being denied access to the only medicines which treat the condition because of where they live.

This week Scotland on Sunday’s campaign to raise awareness of MS focuses on the treatments that are currently available for patients, asks why they are only being offered to people in some parts of the country and highlights the new medicines which may bring hope in the future.

Aside from medications used to tackle the debilitating symptoms of MS, the only medicines used to treat the disease are beta interferon and the recently licensed glatiramer acetate (Copaxone).

Although neither is a cure, both have been shown to slow the progression of some forms of the condition by reducing the number and severity of the relapses experienced by people with MS. These relapses can involve pain, paralysis and blindness and leave behind increasing disability.

Beta interferon has been shown to cut the number of relapses by about a third and their severity by around half.

Neurologists believe that up to 20% of MS patients can benefit from taking beta interferon or glatiramer.

Nevertheless, despite their scientifically proven clinical effectiveness, many Scottish health boards are refusing to prescribe them because of their cost - about £10,000 a year per MS patient for beta interferon and around £6,500 a year for Copaxone.

The Scottish Executive has estimated the total cost of providing beta interferon to everyone who could benefit from it at about £7m, which is only about 0.1% of annual health expenditure in Scotland.

At the moment only just over 2% of MS patients in Scotland are lucky enough to receive beta interferon on the NHS from their local health board. In countries such as Greece and France the proportion is 12%, rising to 13% in Germany and 15% in Finland.

Scotland has the highest prevalence of MS in the world yet these drugs are more difficult to get hold of here even than in England, which also lags behind the rest of Europe.

In an effort to address the problem of so-called ‘postcode prescribing’, two bodies - England’s National Institute for Clinical Excellence (NICE) and the Health Technology Board for Scotland (HTBS) - were tasked by the government in 1999 with assessing the clinical effectiveness and cost effectiveness of beta interferon and glatiramer acetate.

Two years later on, however, both NICE and the HTBS are still to make their rulings on whether the medicines should be available through the NHS.

In Scotland a decision will not be made until 2002. Campaigners say ministers are absolving themselves of the responsibility of making the decision by passing it on to an unelected quango.

Pending the rulings, it has become even more difficult for MS patients to get hold of beta interferon. Many Scottish health boards have stopped prescribing it altogether or limit it to MS patients who were already receiving it before the review was announced.

The Greater Glasgow Health Board and Lothian Health Board - which together have more than 3,000 MS patients, almost a third of the Scottish total - are not prescribing beta interferon to new MS patients.

The delay means many people with MS who could have benefited from taking beta interferon will now never have the opportunity because their condition will be too serious by the time a decision is made.

Mark Hazelwood, director of the MS Society in Scotland said: "There is no doubt that these drugs reduce relapses and slow the progression of the disease. They may enable a young mother to continue to take care of her children and live independently.

"Although prescribing beta interferon would make a mark on health boards’ budgets, in the long term the cost is offset by wider savings to society."

He added: "Unfortunately, cost-effectiveness calculations by health boards often miss this point as they focus narrowly on their own budgets.

"Quality of life improvements are also difficult to put monetary values to and so are often just ignored by economists and decision-makers.

"The most disgraceful aspect of this delay is that some people who could have been helped by receiving beta interferon will have lost their chance."

Dr Jonathan O’Riordan, consultant neurologist at Ninewells Hospital in Dundee said: "The UK’s view that we need cost-effective treatments seems to be at odds with other European countries and the United States which have decided that patients who are eligible should be treated.

"A decision should be taken once and for all. There is enough evidence out there to suggest that these agents should be made available." O’Riordan is currently carrying out trials on a new medicine called Antegren. He describes the results of preliminary trials as "promising" and says the medicine could offer benefits over beta interferon or Copaxone.

Nonetheless, it will be at least five years before it is licensed for use in the UK.

Nationwide trials have also begun on cannabis, which is taken illegally by some MS patients to help alleviate symptoms such as spasms and pain.

Hazelwood says that the use of cannabis by some with MS illustrates the sense of desperation many feel when denied medicines by the NHS.

Whether or not Antegren and cannabis prove a fillip for MS patients, they are a group which has become used to having its hopes raised and then dashed by a series of unfounded ‘miracle cures’.

"There are all sorts of ‘treatments’ trumpeted on websites," said Hazelwood.

"Often there is no evidence of any scientifically proven benefits and quite clear risks. It concerns us that people might do something dangerous."