Desperate families are shelling out millions of pounds every year to send their terminally ill children abroad for ‘unproven’ brain cancer treatment which ‘doesn’t work’, experts have warned.
Foreign clinics offer small patients places for clinical trials of experimental drugs, but make them pay for every aspect of treatment.
All have been told by NHS doctors that there is nothing more that can be done to slow the disease, so feel they have no other choice.
Medical centers – often in Mexico, Germany and the US – charge a high price, with families raking in up to £1m. Most raise money through crowdfunding sites like GoFundMe and JustGiving.
However, leading brain tumor experts say many of these clinics offer “unusual” drugs and surgical procedures and sometimes “take advantage” of families looking for a glimmer of hope.
Anthony Freeman’s family raise £246,000 for daughter Jasmine’s treatment in Holland
In some cases, these treatments have a high rate of side effects, leading some children to be hospitalized, they say. And in many cases, these treatments do not prolong life.
Some doctors dealing with brain tumors in children have told The Mail on Sunday they know of families who have sought help from clinics that have been offered ineffective low-carbohydrate diets and cannabis oil treatments.
According to GoFundMe, around £500,000 is raised each year to fund private treatment and related costs for children with just one form of rare brain tumour, diffuse intrinsic pontine glioma (DIPG).
Our findings come after the Government announced last week that it would spend £40m on brain tumor research in a bid to improve the disease’s poor outcomes.
Brain Tumor Research is calling on the government to use the money to fund more clinical trials for children with the disease so that parents are not forced to pony up these huge sums or find themselves in extreme financial difficulty.
“We know of at least five families who collected money for a trip abroad last year. The numbers using these last-chance options put the UK to shame,” says Dr Karen Noble, director of research at Brain Tumor Research.
“Of course, parents travel to the four corners of the Earth to find hope, but that hope must be based on science and clinical evidence. Our position is not to criticize the families, but to fully understand and be outraged that this situation has reached where the UK has fallen down the list of clinical trial countries.’
“Unfortunately, most foreign treatments do not extend children’s lives any more than standard NHS treatment,” says Dr Fernando Carseller, consultant pediatric neuro-oncologist at The Royal Marsden NHS Foundation Trust.
“And there are times when children experience uncomfortable side effects while taking these medications.”
Around 16,000 people in the UK are diagnosed with a brain tumor each year. About 400 of them are children.
Less than a fifth of patients survive more than five years after diagnosis.
Brain tumors are also the biggest cancer killer in children.
Clinical trials — which allow patients to access new, experimental treatments before they are approved — may offer some hope.
However, since 2017, the number of new trials has fallen by 40 percent due to a lack of funding and the impact of the Covid pandemic. News of experimental treatments often spreads through Facebook groups dedicated to brain tumor families.
Before the pandemic, Mexico saw a surge in demand for an unproven procedure that involves injecting chemotherapy drugs directly into the arteries that carry blood to the brain, experts say.
This was based on the theory that many cancer drugs are ineffective because they cannot cross the blood-brain barrier, a membrane filter that blocks unwanted substances from entering the brain.
In one case, the British family of nine-year-old Lucy Moroney raised £300,000 in 2017 to send her to Mexico for the procedure.
However, less than a year after starting treatment, Lucy died. So far, there is no high-quality evidence that the procedure has benefited patients.
Experts say there have been other new trends in treatment since then, which have led parents to travel abroad.
“I’ve had parents ask about ketogenic [low-carbohydrate] diet and CBD [cannabis] oil clinics for their children,” says Dr. Karseller.
“These trends come and go, but families will cling to everything. They don’t want their children to miss out on an experimental treatment that could save them.”
He added: “Most doctors in these clinics will not accept children who are too ill to benefit. But there are doctors who take advantage of the desperate situation of these families.”
Unlike going abroad, there is no cost to take part in clinical trials in the UK.
Eight-year-old Rudy Abbott, from Edinburgh, was told by the NHS in 2022 that his brain cancer was incurable and after his parents raised £110,000, he was sent to Seattle in the US for an experimental trial of immune-boosting drugs.
Rudy was on the medication for just four months before doctors concluded it wasn’t working. He died less than a year later.
While experts sympathize with parents who are doing everything they can to save their children, some question whether these crowdfunding projects are being put to good use.
“We’re talking about huge amounts of money,” says Dr. Carseller. “In some cases it would be sufficient to open a new court case in the UK on its own.
There is also the risk that the patient may become seriously ill while abroad, putting the family in even greater financial difficulty.
In 2022, 13-year-old George Fox, from Bedfordshire, traveled to Los Angeles after his parents raised £300,000 on GoFundMe to send him through unapproved cancer treatment.
However, during the journey, his condition worsened and he was taken to the hospital. He never started treatment. The family were left with a £500,000 medical bill, which was paid for by raising a further £200,000 through crowdfunding. A few months later he died.
“Families are away from their support network and without the NHS when a child deteriorates overseas,” says Professor Darren Hargrave, a pediatric neuro-oncologist at Great Ormond Street in London. “They may face unexpected and enormous additional costs and stress.”
However, there are some children who benefit from going abroad for treatment.
In 2014, the parents of Ashia King, a five-year-old brain tumor patient, withdrew his health care and moved abroad.
Ashiya successfully underwent surgery to remove the tumor, but the hospital planned to treat him with radiation therapy to make sure the cancer did not return.
Nagme and Brett King wanted their son to receive proton beam therapy instead, which is similar to radiotherapy and is believed to have fewer side effects but was not offered on the NHS at the time.
Ashia was removed from Southampton General Hospital and the family traveled to France. This sparked an international manhunt that resulted in the parents being arrested in Spain.
But in the end, the High Court ruled that Ashiya could receive proton therapy in the Czech Republic. Ten years later, he is still alive and the NHS now offers proton therapy to some brain cancer patients.
Experts say that such cases are rare, and that the harsh truth is that in many cases there is nothing that can be done for patients – especially those with DIPG tumors.
“When I see children with these tumors, I want to be sure that the child is being looked after,” says Professor Hargrave. “We want to make sure they don’t suffer and that the family is supported.
“We could talk about experimental trials as a possibility, but we’re going to be honest about the chances of the trial therapy working.”
However, experts agree that it is vital that the government commits more funding to brain cancer clinical trials in the UK.
“Trials are not a panacea, but they are the best solution we have,” says Dr. Carseller.
“The more patients we can trial in the UK, the better chance we have of finding new medicines.”
£250,000 ATTEMPT TO LECTURE WAS IN VAIN
The first sign that seven-year-old Jasmine Freeman was anything but healthy was when she started having double vision in February 2023.
Her optician in Bracknell, Berkshire, couldn’t find anything wrong with her eyes, so a few weeks later Jasmine was sent to hospital for a brain MRI.
Jasmine Freeman developed an incurable medium-sized glioma and died in January, less than a year after her diagnosis
Her father Anthony, 37, says he got the news that night: Jasmine had a brain tumour.
The next day, the neurosurgeon explained to Anthony and Jacqui, Jasmine’s mother, that she had an incurable glioma in the middle.
“We were told she probably had 12 to 18 months, even with radiotherapy,” says Anthony, a former operations manager at Heathrow who is estranged from Jacqui. “I refused to believe that there was just nothing they could do.”
Anthony researched experimental treatments abroad and discovered that a drug called Onc-201 was being tested in the US and the Netherlands. The family raised £246,000 via GoFundMe for treatment, but Jasmine died in January 2024, less than a year after being diagnosed. Anthony says, “We wanted to keep her with us as long as possible.”