Parents say they have to go abroad for neuroblastoma treatment the NHS will not provide – but many who do face further despair
Lilly MacGlashan is two years, seven months old. Her parents count the months as others might not, because each is precious additional time, bought at high cost. She was diagnosed soon after birth with neuroblastoma, the cancer that causes more children’s deaths than anything other than tragic accidents.
Her father, John, has nothing but praise for the early treatment she had from the NHS. She had chemotherapy to shrink the large tumour in her abdomen on her adrenal gland, followed by surgery to remove it. Addenbrooke’s hospital in Cambridge gave her the all-clear in June 2010. Then, unusually in such a young child, she had a sudden and violent relapse the following month.
“She was covered with tumours – all over her brain and spine,” he said. “We had a fabulous oncologist at the time. She attacked it aggressively with high-dose chemotherapy and stem cells taken and put back into her body. She had that and reacted fabulously.
“Then they took us into a room and said that’s all we can do. It will come back within two months to two years. Take her home and take some pictures and enjoy her while you can.”
The MacGlashans are not the only parents to have had that devastating advice. Neuroblastoma, a relatively rare cancer that develops from nerve tissue in about 100 small children a year, is usually not found until it has spread. In those children with advanced cancers, deemed the high-risk group, only 30% survive for five years after diagnosis.
The treatment these children have on the NHS is good, but for those who relapse the only option is a clinical trial for which not all are eligible. Neuroblastoma sits on the faultline of what the NHS is able to do and is willing to pay for – but the debate is much more difficult, because unlike other terminal cancers, the lives it shortens and takes are those of young children.
The MacGlashans, from Dunstable, Bedfordshire, reacted as most parents do. They were not prepared to accept the verdict that nothing more could be done and started raising money to pay for treatment abroad. With the help of their NHS oncologist, the couple found the only place in the world offering treatment for children whose neuroblastoma has relapsed and spread across the blood/brain barrier. They took Lilly to the celebrated Memorial Sloan-Kettering cancer centre in New York.
Lilly has had pioneering immunotherapy there – given antibodies that attach to the neuroblastoma cells and activate the child’s immune system to attack and kill the tumour. The results have so far been remarkable. There is no sign of the cancer, although dark patches on brain scans caused by past haemorrhages may hide cells. It had invaded her eye, but her sight is back to normal. The only sign of Lilly’s illness is that radiotherapy has left her smaller than her healthy twin sister, Molly.
The strain on the family has been enormous. Lilly has just gone back to New York for another set of the regular scans she must have, which cost $59,000 (£37,000), before flights and other costs. So far, her treatment has cost £610,000, raised from family, friends and public appeals.
“It’s just part of my life now,” said John MacGlashan, an electrician who took a year’s unpaid leave while his wife, Dawn, stopped work as a hairdresser to raise money and take Lilly to New York. “All I think about is getting the money to get her over to America to get the next set of scans, which they won’t do in the UK. New York is one of the most expensive places I have ever lived in – it costs up to $5 for a loaf of bread. We spent nine months there last year and three months so far this year.”
So far they have raised £250,000 and he is touched by the events people have organised to help. “Such generosity,” he said. “People knock the British public but they are amazing.” But worrying every day about money, he says, is “a massive strain, it’s awful”.
Lilly has done fantastically well so far, he says. He was heartened by meeting children who had survived for nine and even 11 years, on a fundraising walk in Central Park. “Some kids are surviving who can’t get it out of their body but the drugs are keeping them going and they go to school and have full lives. The worst thing in this country is that they will not accept that. I’m not knocking the NHS. They have the best chemotherapy for neuroblastoma and they get the kids to a terrific position. But I’m disgusted with the way they won’t help [after relapse]. They could give money to the primary care trusts and funding for children to go abroad.”
At Sloan-Kettering, he says, there are children from Greece, Italy, France, Spain and Norway who are fully funded by their governments.
Immunotherapy is promising. Britain is participating in the European Siopen trial, which some relapsed children are eligible to join. It compares a combination of a monoclonal antibody called Ch14.18 and a cytokine (molecules that stimulate the immune system) against antibody alone.
But the Neuroblastoma Alliance, which supports families such as the MacGlashans to raise money for treatment abroad, points out that a trial in the US, published by the eminent New England Journal of Medicine, has already shown that using the antibody together with two other cytokines cuts deaths by 25%. US children now receive all three drugs. “Parents say if there is published research that says three drugs work, I want my child to have three – not just one,” said its chief executive, Alison Moy.
The parents of one child who was enrolled in the trial and was then randomly assigned just one drug took the extreme step of going to court. Last year, the high court judge Mr Justice Ryder ruled that it would be in the best interests of the girl to have both drugs. When their NHS trust still refused to guarantee to provide both drugs, the family went to the US.
The MacGlashans’ MP, Andrew Selous, last month in the Commons questioned the ethics of the European trial for not ensuring all the children taking part get at least the best existing treatment. “At the moment, there are too few options available for high-risk neuroblastoma children who fail to achieve a lasting remission after frontline treatment,” he said in a Commons question to the health minister, Paul Burstow.
“In the UK, parents see a system that gives up on their children too soon while there should still be hope. Much higher numbers of children are surviving for much longer with the American treatment, and some are achieving permanent remission following treatment at the Memorial Sloan-Kettering cancer centre in New York. We need to make sure that level of expertise is available here in the United Kingdom.”
But the government’s cancer director, Prof Sir Mike Richards, says he is still not confident the US treatment, with two extra cytokines, is of benefit and not harmful. The European clinical trial was intended to help answer that question. That, he said, is “why, frankly, we can’t recommend patients to go abroad”. The drug combination had not been licensed in the US, he said. “No authority would want to be denying children a treatment unless they had good reason.”
Other families are led into desperate measures, heading with their children for clinics abroad offering treatments for which there is far less evidence.
In June, seven-year-old Olivia Downie from Fraserburgh, Aberdeenshire, travelled to a clinic in Tijuana, Mexico. She was gravely ill and her mother, Lauren, says she hoped only to relieve her pain which even morphine could not control. But the treatment – sono-photodynamic therapy – did nothing to help her. She got much worse and an ambulance was called. Olivia was put on a life-support machine and transferred to a private Mexican hospital. Her parents were forced to appeal for money to fly her home in an air ambulance. Their pleas for her to be brought home to die touched many people and more than £150,000 was donated. Olivia died within 48 hours of her return.
Lauren said the NHS did all it could for Olivia but the options ran out. She feels too little money is going to research into a devastating disease. “People are having to make random stabs in the dark to try to prolong their children’s life or quality of life,” she said. She now deeply regrets travelling to Mexico.
David Longman understands why parents go to extreme lengths. He did it in 2004, when his daughter Louise, 19, had a vascular tumour. The NHS said the only answer was amputation of her arm or radiation which would render it useless. Longman took Louise to a Russian clinic for what was advertised as photodynamic therapy – the use of a drug which, when activated by light, would kill cancer cells.
“She went to Russia for treatment. It had no effect whatsoever. If anything, the tumour grew,” said Longman. “I couldn’t afford the £30,000 so did a deal with ITN. We went on TV and said it was a miracle. The trouble is that if someone wears a white coat and says they are going to do their best for us, we believe them, even if they fail.
“The sadness is that there are properly regulated, organised clinics outside the UK, but if you find them advertising on the web offering to do miraculous things that nobody else in the UK believes are possible, you have to question it.
“We’re not talking about Sloan-Kettering in the US. I have yet to hear of anybody who has come back from Mexico who is fixed and yet to find anybody who has been to China and who has said I have got rid of my tumour – it has gone. There may be the odd one who comes back fixed but there is no guarantee that it was the treatment that fixed them.”
PDT – photodynamic therapy – in fact was the answer for Louise, but not in Russia. Longman tracked down the leading experts in Britain and persuaded one of them to treat Louise. PDT is approved by the National Institute for Health and Clinical Excellence (Nice) for use in some cancers, such as skin and lung cancer, where it is possible to get light from a laser to within 1cm of the tumour.
While the Russian doctor had merely shone light on the skin, doctors pioneering the treatment in Britain were able to put optical fibres into the arm to activate the light-sensitive drug. Louise was cured and Longman started a charity called Killing Cancer to campaign for more recognition and funding for PDT in recognised centres in Britain.
Neuroblastoma is not susceptible to PDT, because the cancer cells hide and invade parts of the body that light cannot reach. Clinics in Mexico and China are offering what they claim is an advance – sono-photodynamic therapy, or SPDT. They sell it as a natural, non-invasive therapy, using non-toxic light-sensitive substances such as chlorophyll which “explode” with oxygen, killing the cancer cells when activated not only by light but also by ultrasound waves which, they say, can reach every part of the body.
Prof Keyvan Moghissi, one of the UK’s foremost experts on PDT, says there is no good evidence for SPDT. “In my opinion, SPDT is not a clinical reality,” said Moghissi, a heart and lung surgeon who was involved in the earliest clinical trials of PDT and edits the leading journal in the field.
Moghissi, who founded the Yorkshire Laser Centre which provides PDT for the NHS, says some basic research has been done on SPDT, but “for doing it in humans, I believe there is no place for it. I believe there is a lot of laboratory work to be done.”
Mohgissi says nobody should be prevented from getting the treatment they want – “thank God we live in a country where there is a choice,” he says. But good information is key.
“Before spending money, before going abroad, people should have consultations with people in this country. Their GP should send them to people who are knowledgeable.” Sometimes hospital consultants are also not as helpful to families as they could be in telling them there is no more that they can do for a child, he added. “They should say, let me help you, understanding that when you have a child suffering you are very vulnerable.”
Prof Harry Moseley of Dundee University, who runs a unit offering PDT at Ninewells Hospital & Medical School, co-wrote a etter to the journal Integrative Cancer Therapies, which published accounts of three patients with advanced breast cancer who were given SPDT. He questioned the conduct and ethics of the trial, which is cited by clinics offering SPDT as evidence that it works. “We could not find sufficient grounds to support the use of this technique for treatment of cancer,” he said.
A Hunstanton charity has supported families who want to try SPDT in Mexico, including the Downies. It was also involved subsequently in the appeal for money to bring her home. “There is evidence that it works,” says Linza Corp, who runs Families Against Neuroblastoma (FAN). “It is a very inexpensive, non-invasive therapy. Unfortunately not many people have gone through it, so we have got little evidence. But there are a couple of children we are supporting and although they are still very, very poorly, they are still here.”
She cites the case of Connah Broom, an 11-year-old boy with neuroblastoma who went to Mexico for PDT and whose secondary tumours – but not the original one in his abdomen – are said to have gone. His GP, Dr Eamonn Jessup from Prestatyn Central Surgery, has said that although there has been remarkable improvement, he cannot be sure what caused it. “Whether it is the health regime they are following for Connah, whether it is the treatments they are following, I don’t know,” he told the BBC last December. “It is right that as scientists, which is what doctors are, we have to be sceptical about new treatments.”
The downside to the publicity that resulted in funds to bring Olivia Downie home, Corp said, “is that people are going to think perhaps it doesn’t work. The reality of that is that Olivia was dying before she ever set foot on the plane. We knew that.”
It would have taken a miracle for Olivia to get better, she said, but added that “there was hope” because the Mexican clinic was willing to accept her for treatment. “We are not a medical panel. We are a charity that facilitates a parent’s choice.”
Corp’s own son, Max, died from neuroblastoma while she was trying to organise treatment for him in New York. “When a child is dying in your arms you will do everything to try and save them,” she said.
She took him for a brain scan while he was in a coma because she needed to have him certified fit to fly. “The result of that MRI scan showed he had something like 22 tumours within his brain and spinal cord and that there was no way in the world now that he could be saved and I must have spent half an hour shouting “just sign the fucking form”, because I thought it doesn’t matter to you – just let me do this. I’m his mum – I want to do this.”
Corp also cites Bobby Wright as a survivor of neuroblastoma, supposedly as a result of an organic diet and supplements (following conventional treatment). FAN’s website recommends a consultation with the organisation set up by Bobby’s father, Kevin Wright, called Kids Integrated Cancer Therapy, “as early in treatment as possible”. Wright, however, has been charged with nine counts of fraud and 11 of theft, mostly relating to donations for his son’s treatment, and will appear at Nottingham crown court in the autumn.
David Longman, of Killing Cancer, says the government should be helping parents navigate their way around the claims made by clinics abroad. “What I find completely odious is that the Department of Health will give us no guidance whatsoever,” he said. The Foreign Office gives advice to travellers about potential hazards abroad, so why shouldn’t the Department of Health do something similar? he asks.
Cancer Research UK does attempt to give general advice. “Treatment in hospitals in the UK is evidence based. We would recommend that people are extremely cautious about accepting any treatment that has not been through rigorous clinical trials that demonstrate its safety and effectiveness,” said Martin Ledwick, the organistation’s head information nurse