Why won”t they save Adam Parents furious after NHS Trust refuses to fund potentially life-saving cancer treatment
Adam is receiving treatment after parents raise tens of thousands of poundsThey warn other children may not be so lucky
An eight-year-old boy with an aggressive form of cancer has fallen victim to a “postcode lottery,” after his health authority refused to fund his place on a trial that could save his life.
Adam Bird has undergone two-and-a-half years of intensive treatment since he was diagnosed with neuroblastoma, which affects the nerve tissue.
Doctors say immunotherapy – which is offered in Germany – could slow down the condition and even provide a potential cure.
Battling on: Adam has continued to go to school in between treatments for his rare condition
His consultant at the Royal Marsden applied for funding in June but the request was turned down by Adam”s local NHS trust.
Yet his parents had met families from Dorset, Cornwall, Devon and Wales who all had children receiving NHS funding for the treatment.
His father Nick said today: “It is totally unacceptable for Adam to be treated differently from children from other parts of the UK – he should not be discriminated against simply because of where he lives.
“This isn’t a life prolonging treatment for Adam. This is potentially a cure – the difference between him making90 or his ninth birthday.”
Refusing to be beaten, his parents set up the charity Adam”s Appeal, which has funded his ongoing treatment.
He now spends two-and-a-had weeks in Germany getting treatment and the same amount of time at home.
Mr Bird, 40, and his wife Alison, 41,from Epsom in Surrey have two other children who are 10 and 12 who stay with other family members when they take Adam abroad.
The whole family are now going to Germany this week so they can be with Adam while he has treatment over Christmas.
Good spirits: Adam undergoes an EEG to check on his seizure risk during treatment
However, they said there were many other children who would not be able to raise the 68,000 needed to pay for the whole trial.
“Life is simple hard hard enough as it is when things out of your control make it harder still you just resent it,” said Mr Bird.
“However, I am doing it for other families who may be in the same situation as ourselves, who cannot raisethe money – it is simply not right.”
He added that he still strongly disagreed by the decision made by the Surrey Primary Care Trust to refuse to pay for Adam”s treatment.
“We do question the unfairness ofAdam being treated differently from other children throughout the country – how can that possibly be justified” he asked.
Mr Bird father said the Department of Health had decreed during an appeal for another boy with neuroblastoma that funding would be made available for overseas trials of immunotherapy if children did not qualify in Britain. However, some PCTs were not honouring this.
The charity, Neuroblastoma Alliance UK, has helped the family throughout Adam’s illness.
Adam, pictured here in June, is heading over to Germany for more treatment over Christmas, after his parents raised the necessary funds
“It seems very unfair that children do not receive the same treatment from the NHS across the UK,” said the charity’s chief executive, Alison Moy.
“There really is a postcode lottery in terms of receiving this potentially life-saving treatment, which is something that the Government urgently needs to address.”
Linda Honey, head of pharmaceutical commissioning at NHS Surrey, acknowledged that requests for the specialist treatment would only be considered under an individual funding request policy and needed to demonstrate “exceptional” clinical circumstances to be put forward.
She said the decisions made by other primary care trusts to fund the treatment were “local decisions which take into account individual circumstances.”
“I understand that Adam is currently receiving monoclonal antibody treatment and we wish him well,” she said.
“Clearly, Adam’s family are disappointed with our decision to not fund his treatment abroad – our decision takes into account the clinical evidence available, individual circumstance and an assessment of the benefits to the patient.
“Monoclonal antibody treatment is only available in clinical trial in the UK – unfortunately, where patients fall outside the eligibility criteria for entry into this trial this has left the patients and their families in very difficult situations.”
For more information on Adam”s charity visit http://adamsappeal.org/