It has been a long, tangled and dreadfully painful story, and it is not over yet. Jaymee and her father remain outraged by their health authority's refusal to pay for her to have a second bone-marrow transplant in February. The question of the cost - pounds 75,000 - clouded every other aspect of the case, and the health authority has emerged as the villain. But that may be a harsh judgement. This story is partly about money, but more about conflicting views on medical ethics.
Jaymee has a very rare secondary leukaemia with chromosomal abnormality. Some 60-70 per cent of children now survive leukaemia after a single chemotherapy treatment; thefew who fail, like Jaymee, go on to have a bone-marrow transplant. When Jaymee relapsed in January, less than a year after her bone-marrow transplant, she had already had every available conventional treatment and doctors told her father that she had reached the end of the line.
It appears Jaymee's doctors suggested she had a 2.5 per cent chance of survival, although this figure is much disputed. Jaymee's father took the view that while there was any hope at all, she should have a second bone-marrow transplant, a procedure which, leading cancer specialists say, they would never offer. It is painful, and there are no known cases of survival.
On the advice of the leading doctors in the field who belong to the UK Children's Cancer Study Group, palliative treatment only was offered to Jaymee. She might, they told her father, go into remission for a while spontaneously, but probably sooner rather than later she would die. Refusing to accept this verdict, he took her to the Royal Marsden, the specialist cancer centre in London, who gave the same opinion. A third doctor at the Hammersmith Hospital also refused to treat her, but seeing her father's despair, suggested a man in the private sector with a reputation for having a go against any odds. That man was Dr Peter Gravett, of the private Portland Hospital, near Harley Street in central London. Recently retired from the army, Dr Gravett went straight into private practice, out of the orbit of the NHS child cancer specialists.
Unlike the more shambolic and erratic treatment of adult cancers scattered in non-specialist hospitals, the children's cancer consultants have for many years been a tightly knit group working out of highly specialised centres with strict protocols for trials of new treatments. The system enables rapid transmission of new information from centre to centre - one reason why Britain has been at the forefront of childhood leukaemia cures.
Not surprisingly, the things the NHS doctors say about the outsider Gravett don't bear printing. However, yesterday they were all having to eat just a crumb or two of humble pie. "The child has done considerably better than could have been expected"; "This is a remarkable and exceptional case," they have been saying, expressing pleasure in the child's survival between slightly gritted teeth.
Back in March Dr Gravett had set their teeth on edge with a defiant press conference, announcing that he would treat Jaymee (then known as Child B) with a second bone-marrow transplant. A private benefactor put up the money. However, taking a closer look at the exceedingly bad figures for second transplants, Gravett changed his mind. He met with Professor Grant Prentice of the Royal Free, who recommended instead a brand new treatment - donor lymphocyte infusion. It involved taking blood from Jaymee's sister, treating it, and infusing the white blood cells.
Throughout Europe 52 people have had this treatment since it was invented four years ago, of whom 11 are still alive two years later. The 20-30 per cent survival figure Dr Gravett has quoted for Jaymee's current survival prospects is drawn from this small sample. Professor Prentice says: "My longest surviving patient is now at two and a half years. We are just guessing what the ultimate survival rate may be, perhaps closer to 20 per cent."
The official view of the UK Children's Cancer Study group remains that this treatment should only be offered as part of a clinical trial in a specialist centre. This raises the ethical question: if a patient has reached the end of every conventional therapy, and this new treatment may offer a slender extra hope, shouldn't it be offered to anyone in Jaymee's condition? No, the UKCCS still says.
Professor Clifford Bailey, chairman of the UKCCS, explains: "Very little has been published on this. If we followed up every suggestion of a breakthrough without a proper trial, we would waste our energies on too many false starts." That, however, is unlikely to be the view taken by any parent of a child close to death.
Jaymee's health authority, Cambridge and Huntingdon, maintain that they would always have paid for an approved treatment in a reputable centre - it was the medical advice that led them to refuse to fund a second bone-marrow transplant. But the health authority did also have to consider the treatment's "effectiveness", which includes cost-effectiveness. The low odds plus the extra suffering combined, they believe, would not have been worth the money. The chief executive, Stephen Thornton, is keen to point out that in the week they turned down Jaymee's pounds 75,000 operation, they agreed a pounds 300,000 treatment for a haemophiliac boy.
Cambridge and Huntingdon is now paying all Jaymee's bills, including treatment at the Portland Hospital, where she went yesterday for a 48- hour adjustment to her drug regime. If she needs a further donor lymphocyte infusion, and a "reputable centre" recommends it, the health authority will pay for that, too.
Jaymee's father this week went to court to lift the legal ban on identifying her so that he could raise money from newspapers to pay for more treatment. The judge said he regretted this, but in the circumstances, he felt obliged to agree. However, it appears that the money is unlikely to be needed for her care, as the health authority will now pay for any further treatments currently envisaged. If asked again, however, they would still refuse a child a second bone-marrow transplant.
Unfortunately, Jaymee's treatment is unlikely to prove a miracle cure. Most experts think that if donor lymphocyte infusion does prove useful, it will be just another weapon in the armoury against leukaemia, as they continue to roll back the death rate, extending survival time little by little.
Jaymee's case highlights two intractable dilemmas. First is the public's emotional rejection of the idea that any treatment, however expensive and unproven, should be denied by the NHS. As rationing becomes an increasingly pressing issue, this problem will recur. But just as difficult, any new development will always be demanded by the desperate: the question for doctors is at what point, ethically, to agree to its use, bearing in mind the extreme pain and suffering any patient may have to endure. There simply is no easy answer.Reuse content