Must they beg for the price of a better life?

A new drug could help thousands of multiple sclerosis sufferers. But th e authorities seem reluctant to pay for it. Liz Hunt finds out why
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Jean Skasick is a difficult patient and makes no apology for it. Since June last year she has bombarded with letters everyone she thinks can help her, from Virginia Bottomley, the Secretary of State for Health, to officials at her local health authority, begging to know why she can't have a drug that she believes may slow the progress of her disease. She and her husband, Jim, have spent hours on the phone lobbying officials, and make regular visits to their local MP's office in Wandsworth, south-west London. Jean, who is 48 and lives in Balham, is desperate and determined: "[The drug] may give me more time, and more time for medical science to find some other better treatment. It will put back a bit of the fight into my body against this cruel disease," she says.

The "cruel" disease that Jean suffers from is multiple sclerosis, a chronic degenerative condition of the nervous system with debilitating symptoms which can affect every system in the body. There are 85,000 people in Britain with MS, and there is no cure. The drug Jean wants is Beta-Interferon, heralded as the "biggest breakthrough in MS for 20 years" by American doctors, and described as "encouraging" by their more cautious British colleagues, who are waiting for the results of European/Canadian trials due in 1996-1999 before giving a verdict.

Beta-Interferon has yet to be licensed in the UK, although it can be prescribed by a GP with a consultant's approval under the "named patient" scheme for new drugs. It is, however, expensive; costs are estimated at between £5,000 and £30,000 a year, depending on the type of injection used and its strength. About 25,000 people with a form of MS known as relapsing or remitting MS are potential candidates for treatment with the drug. Demand will be high and the cost to the health service substantial at a time when the Government is determined to control a rising drugs budget.

The Myelin Project is a charity that supports research into demyelinating diseases; those that damage myelin, the insulating tissue around nerve fibres. The charity fears that health authorities and trust hospitals in the market-orientated NHS will be reluctant to pay for Beta-Interferon when it is licensed. The Multiple Sclerosis Society acknowledges the problem and says it is in discussion with the Department of Health. But some consultant neurologists think it is too late. They believe that the department has quietly begun a campaign to deter some providers from funding the drug, and that the authorities are in turn putting pressure on GPs not to prescribe it.

Jean Skasick's experience of "stonewalling and being fobbed off", of ignored letters and unreturned phone calls, of doctors who say they will prescribe it and then change their minds, is far from unusual. It is also unfair. At least 20 MS patients aroundthe country are receiving Beta-Interferon, paid for by their district health authorities, family health service authorities or trust hospitals. Another 15 or more are paying for it themselves. "It is making a mockery of a so-called equitable healthcare system," says one consultant. "In terms of someone being disabled, this is cheap. It's a case of `not on my budget' syndrome."

Maggie Venables is a victim of that syndrome. The 37-year- old staff nurse from Burton-upon-Trent was diagnosed with MS last year. She read about Beta-Interferon in medical and nursing journals, and with three young sons to care for and her salary essential to the family she wanted the chance of a few more years free from disability.

Initially Mrs Venables asked to be included in clinical trials, which at that stage were still recruiting British patients. "But my neurologist didn't agree because some people get a placebo rather than the active drug. He said that without it [Beta-Interferon] I'd be in a wheel-chair in two years. Another consultant supported me, and my GP was willing to write the prescription, but the health authority won't pay for it," Mrs Venables says.

Michael Lane, medical director of Staffordshire Family Health Service Authority, insists that it is "inappropriate" for the consultant to ask her GP to write the prescription. "The last thing we want is for the patient to be `pig in the middle'," he says. But that is exactly what Maggie Venables has become: the North Staffordshire Hospital NHS Trust feels it is equally inappropriate for them to pay.

She is frustrated and depressed. "Maybe I should just move houses. I've heard about people just a few miles from here getting it, and MS people in Bradford have had it on the NHS. It is just so unfair."

Dr Simon Ellis, a consultant neurologist at the North Staffordshire, agrees. Mrs Venables is one of four patients he has recommended as suitable for Beta-Interferon but who cannot get it because no one will pay for it. He says that the authorities are being "disingenuous" when defending their decision. They hide behind concerns that the drug, which has been used in clinical medicine for other diseases for more than a decade, is not safe. And they patronise patients who want it, disregarding the fact that a lot of them know as much about it as the doctors.

"They misquote the literature and use out-of-date results and inflated costs. One of my patients is so desperate that he is going to pay for it himself. He first came to see me privately and I transferred him to my NHS list because he was chronically ill. Now he can't get the treatment on the NHS. It is bizarre," Dr Ellis said.

Mrs Skasick has had a similar roller-coaster ride. Towards the end of last year she believed she was close to getting the drug after a six-month campaign. Initially Merton, Sutton and Wandsworth Health Authority had ruled out any hope of Beta-Interferon.Then Dr Hilary Stirland, director of public health medicine, suggested that Mrs Skasick saw a consultant neurologist, Dr Stephen Wilson, at the Atkinson Morley Hospital in Wimbledon.

In a letter dated 7 October 1994, Dr Stirland writes that Dr Wilson "does recommend it [Beta-Interferon] for a very specific group of patients ... I have spoken to Dr Tan [Mrs Skasick's GP] and she would be willing to refer you to Dr Wilson if you wish.

"If he were to recommend Beta-Interferon to you, it should be possible for an agreement to be reached between him and Dr Tan about necessary supervision and prescription arrangements. Then either the District Health Authority or the Family Health Services Authority would be able to meet the costs ..."

The Skasicks made several attempts over five weeks to obtain an appointment with Dr Wilson. They failed. Dr Alec Forti, a locum GP with extensive experience of MS who had looked after Mrs Skasick since her diagnosis in 1987, was equally unlucky in contacting Dr Wilson. Dr Forti says that in his opinion Mrs Skasick would benefit from the drug. Then came a letter dated 15 November from Dr Wilson to Jean, stating there was "little point in your being referred to see me to facilitate the prescription of this drug when I am strongly of the opinion that it should not be used ..."

A subsequent letter from the health authority confirmed that Dr Wilson did not consider Mrs Skasick a suitable candidate for the drug. She was bewildered: "How could he say that when he had never examined me or spoken to my doctor? As far as I am aware, all he had to go on were my notes from seven years ago when I went into the hospital for tests." Dr Wilson did not return a call to the Independent.

No other patient under the care of Merton, Sutton and Wandsworth Health Authority is receiving Beta-Interferon "as far as I am aware", according to Dr Stirland. She denies pressure from higher authorities not to fund it; the Department of Health insists it is a matter for individual health authorities whether they pay for the drug. The Skasicks, however, are unconvinced. Jean Skasick points to "the most telling letter of all", from John Bowis, a junior health minister, written in September last year. Itstates: "New drugs can be expensive and this includes Beta-Interferon products: money spent on them will mean less for other services."

"How dare they say I am less of a priority than someone who needs a hip replacement or something," Jean Skasick says angrily. She and her husband have launched a private appeal in one last ditch attempt to get Beta-Interferon. "All I want is the chance of a bit of normality and to know that I'm not just sitting here letting the disease do its worst."