The truth about foreign cancer clinics: Desperate families often raise millions to give hope to a terminally ill child, but top experts are sounding the alarm about their ‘unorthodox’ and ‘unproven’ treatments…

Desperate families are raising millions of pounds every year to send their terminally ill children abroad for ‘unproven’ brain cancer treatments that ‘don’t work’, experts have warned.

Overseas clinics offer young patients places on clinical trials of experimental drugs, but make them pay for every aspect of care.

They have all been told by NHS doctors that nothing more can be done to slow the disease – so they feel they have little other choice.

The medical centers – often in Mexico, Germany and the US – charge a high price, with families having to cough up as much as £1 million. Most raise the money through crowdfunding websites such as GoFundMe and JustGiving.

However, brain tumor experts claim that many of these clinics offer “unorthodox” medications and surgical procedures and sometimes “take advantage” of families looking for a glimmer of hope.

In some cases, these treatments have many side effects, requiring some children to be hospitalized, they say. And in many cases, these therapies do not prolong life.

Some pediatric brain tumor doctors told The Mail on Sunday that they know of families who sought help from clinics offering ineffective low-carb diets and cannabis oil treatments.

According to GoFundMe, around £500,000 is raised every year to fund private treatment and associated 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 £40 million on brain tumor research in a bid to improve the poor outcomes of the disease.

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 raise these large sums – or face extreme financial difficulties.

‘We know of at least five families who raised money to travel abroad last year. The numbers choosing these last-chance options are an embarrassment to Britain,” said Dr Karen Noble, research director at Brain Tumor Research.

‘Of course parents will travel to the four corners of the earth to find hope, but this hope must be based on science and clinical evidence. Our position is not one of criticism of the families, it is one of full understanding and outrage that this situation has reached as Britain slides down the list of countries where clinical trials are being set up.”

‘Unfortunately, most treatments abroad do not extend children’s lives more than standard NHS treatment,’ says Dr Fernando Carceller, pediatric neuro-oncologist at Royal Marsden NHS Foundation Trust.

“And there are cases where children experience uncomfortable side effects while taking these medications.”

About 16,000 people in Britain are diagnosed with a brain tumor every year. About 400 of these are in children.

Less than a fifth of patients survive longer than five years after diagnosis.

Brain tumors are also the biggest cancer killer among children.

Clinical trials – which give patients access to new, experimental treatments before they are approved – may offer some hope.

However, since 2017, the number of new studies has fallen by 40 percent due to a lack of funding and the impact of the Covid pandemic. News about experimental therapies often spreads through Facebook groups that focus on brain tumor families.

Before the pandemic, experts say there was a huge demand in Mexico for an unproven procedure that involves injecting chemotherapy drugs directly into the arteries that carry blood to the brain.

This was based on the theory that many cancer drugs are ineffective because they cannot cross the blood-brain barrier – a membrane filter that prevents unwanted substances from reaching 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. There is still no high-quality evidence that the procedure benefited patients.

Experts say there have been other new treatment trends since then that have led to parents moving abroad.

“I’ve had parents ask about a ketogenic (low-carb) diet and CBD oil (cannabis) clinics for their children,” says Dr. Carceller.

“These trends come and go, but families will latch on to everything. They don’t want their children to miss out on an experimental treatment that could save them.’

He added: ‘The majority of doctors in these clinics would not take children who are too sick to benefit from this. But there are doctors who take advantage of the desperate situation these families find themselves in.’

Unlike going abroad, there is no cost to participate in clinical trials in the UK.

Eight-year-old Rudi Abbot from Edinburgh was told by the NHS in 2022 that his brain cancer could not be cured and was sent to Seattle in the US for an experimental trial of drugs to boost the immune system after his parents raised £110,000.

Rudi continued to use the drug for only four months before doctors concluded that it had no effect. He died less than a year later.

While experts sympathize with parents doing what they can to save their children, some question whether these crowdfunding projects are being put to good use.

“These are huge amounts of money we’re talking about,” says Dr. Carceller. ‘In some cases it would be enough in itself to open a new trial in Britain.

There is also a risk that the patient will become seriously unwell abroad, causing even greater financial difficulties for the family.

In 2022, 13-year-old George Fox from Bedfordshire traveled to Los Angeles after his parents raised £300,000 on GoFundMe to see him undergo unapproved cancer therapy.

However, during the trip his condition worsened and he was taken to the emergency room. He never started treatment. The family were left with a £500,000 medical bill, paid by raising a further £200,000 through crowdfunding. He died months later.

“Families are removed from their support network and unable to access the NHS when a child deteriorates abroad,” says Prof 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 traveling abroad for treatment.

In 2014, the parents of five-year-old brain tumor patient Ashya King removed him from NHS care and traveled abroad instead.

Ashya had successfully undergone surgery to remove the tumor, but the hospital planned to treat him with radiotherapy to ensure the cancer did not return.

Naghmeh and Brett King wanted their son to have proton therapy instead, a treatment similar to radiotherapy and thought to have fewer side effects but which was not offered by the NHS at the time.

Ashya was taken 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 the Supreme Court ultimately ruled that Ashya could receive proton therapy in the Czech Republic. Ten years later he is still alive and the NHS is now offering proton therapy to some brain cancer patients.

Experts say these cases are rare and the blunt truth is that in many cases nothing can be done for patients – especially those with DIPG tumors.

“When I see children with these tumors I want to make sure the child is cared for,” says Prof. Hargrave. ‘We want to make sure they don’t suffer and that the family is supported.

“We could talk about experimental trials as an option, but we would be honest about the chances of trial therapies working.”

However, experts agree that it is crucial that the government provides more funding for brain cancer clinical trials in Britain.

“Trials are not a panacea, but they are the best solution we have,” says Dr. Carceller.

‘The more patients we can get tested in Britain, the greater the chance we have of finding new medicines.’

£250,000 trial drug was in vain

The first sign that seven-year-old Jasmine Freeman was anything but completely healthy was when she started experiencing 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 an MRI brain scan.

Her father Anthony, 37, says he got the news that evening: Jasmine had a brain tumor.

The next day, a neurosurgeon further explained to Anthony and Jakki, Jasmine’s mother, that she had an incurable midline glioma.

“We were told she probably only had 12 to 18 months left, even though she was undergoing radiotherapy,” said Anthony, a former operations manager at Heathrow Airport, who is divorced from Jakki. “I refused to believe that they simply couldn’t do anything.”

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 for the treatment via GoFundMe, 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.”