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Are desperate cancer patients who raise money online falling prey to quack medicine?

Cancer patients who want cutting-edge treatments not available on the NHS are increasingly turning to fundraising and, more recently, crowdfunding.

This is where they use online sites such as GoFundMe.com or JustGiving.com to ask for donations to pay for their treatment — typically abroad, in countries such as the U.S., Germany, Turkey or Mexico.

The Mail recently highlighted the story of four-year-old Zac Oliver, from Shropshire, who has a rare form of leukaemia. The NHS could only offer him radiotherapy and chemotherapy, which gave him a 25 per cent chance of survival.

Thanks to crowdfunding, his family were able to take him to the Children’s Hospital of Philadelphia in the U.S. for immunotherapy (which harnesses the body’s immune system to attack cancer), which doctors said would give him a 60 to 80 per cent chance.

Fact: A survey published last year in The BMJ found that more than 540 crowdfunding appeals in the UK have raised £8 million since 2012 to send patients for disproven cancer treatments

While crowdfunding is helping patients gain access to conventional but costly mainstream treatment, people also use it for treatment at clinics offering alternative medicine.

A survey published last year in The BMJ found that more than 540 crowdfunding appeals in the UK have raised £8 million since 2012 to send patients for unproven or disproven cancer treatments.

‘We’re concerned that so many UK patients are raising huge sums for treatments that are not evidence-based and which in some cases may even do them harm,’ said Michael Marshall of The Good Thinking Society, the charity that collated the figures.

A spokeswoman for GoFundMe said it encourages crowdfunders to research what they are raising money for. ‘More broadly, we regularly engage with organisations around issues like this, and we are looking at proactive steps to make sure users are well informed,’ she said.

Crowdfunding is partly a result of a failure in the way doctors communicate with patients, suggests Professor Gordon Rustin, a consultant oncologist at Mount Vernon Hospital in Hillingdon, West London.

‘If you say there are treatments out there but they won’t be funded, people often feel that one of those must be the one to go for.

‘I’ve known patients consider remortgaging their house for a particular treatment in situations like this and it’s heartbreaking.’

We spoke to two families about their very different experiences of self-financed private treatment overseas.

HOW WE SPENT £350,000 TRYING TO SAVE MAGGIE 

Expense: Maggie Thomas (pictured with three of her children) spent £350,000 on various alternative treatments - leaving her family nearly bankrupt by the time of her death

Expense: Maggie Thomas (pictured with three of her children) spent £350,000 on various alternative treatments – leaving her family nearly bankrupt by the time of her death

When mother-of-six Maggie Thomas was told her cancer was terminal, she turned to alternative treatments. She and husband David remortgaged their home and ran up credit card debts as well as fundraising to meet the £350,000 costs in just over two years. The couple were on the verge of bankruptcy when she died at the age of 46.

David, 52, a commercial photographer from Toddington, Bedfordshire, whose children are now aged between ten and 18, tells their story.

Maggie first noticed a lump in her right breast when she was breastfeeding our youngest child, Fintan, then aged eight months, just before Christmas in 2009.

Maggie’s mum, a GP, urged her to get it checked out and a few weeks later she was told she had four tumours in her right breast and would need a mastectomy. We were shattered, but thought at least a mastectomy could cure her.

THE RISE IN APPEALS TO KINDNESS OF STRANGERS 

Crowdfunding websites report a huge rise in appeals related to health, and cancer in particular. For instance, the number of cancer-related appeals that JustGiving hosted increased sevenfold between 2015 and 2016.

Meanwhile, GoFundMe — the world’s largest crowdfunding platform, based in the U.S. — reports that the number of medical-related campaigns it hosted grew by almost 30 per cent between 2017 and 2018. Health is the largest fundraising category on the site, and GoFundMe says tens of millions have been raised for this since it launched in the UK in 2017. However, there are concerns about where some of the funds are going.

Last June, a study reported in the journal The Lancet Oncology found there were 220 campaigns on GoFundMe raising money for cancer treatments involving the use of homeopathy — Cancer Research UK says there is no evidence it works as a cancer treatment.

In 2014, Cancer Research UK launched an appeal to fund three new research projects for the first time, paid for entirely by crowdfunding.

But after the operation we were told the cancer was in 17 lymph nodes and already in her liver. Her consultant gave her 12 months.

Not surprisingly, Maggie just couldn’t accept she was going to die. We had six children together, with our youngest just a baby, and she loved them all to bits — she wasn’t going to give up without a fight.

If I’m honest, though, it was more than about trying to buy herself extra time. She was in denial, and thought alternative remedies could cure her.

She had mainstream treatment — Herceptin, then high intensity radiowaves on her liver and lungs, and that gave us another six months. But then we were told the NHS could offer no more than palliative care.

Maggie wasn’t prepared to settle for that, so she turned to the internet. This led to us paying £5,000 a month for various supplements such as dandelion extract, vitamin C and vitamin D — at one point she was taking 240 tablets a day, prescribed by an alternative health practitioner.

The man was a complete parasite but we carried on paying for them for nine months because she wanted to believe that they could work. Other doctors in the family all told us it was a waste of money.

In fact, I thought a lot of the things Maggie tried were nonsense and we did row about it, but I had to support her wishes. I felt I couldn’t judge her as I didn’t know how I would feel if I was in her shoes. One practitioner told her to download Hebrew slave music and said the vibrations would free ‘mind ants’ that would break down the tumours, which she tried.

Maggie was an intelligent woman but she was desperate and vulnerable and there are people who will exploit that.

By October 2011 we’d had to remortgage our house, run up multiple credit card bills and set up a fundraising website we called Maggie’s Hope. I didn’t want to ask people for money — it goes against the grain to ask strangers to help — but we were desperate.

'Maggie was an intelligent woman but she was desperate and vulnerable and there are people who will exploit that,' says husband David

‘Maggie was an intelligent woman but she was desperate and vulnerable and there are people who will exploit that,’ says husband David

We also did some publicity with the local newspaper and this led to a donation of £150,000 from a billionaire — the boss of an old friend of Maggie’s.

By this time she was very tired, in pain and on morphine-based painkillers, and her health was deteriorating.

After reading about it on the internet, Maggie became convinced we should travel to Frankfurt to see a Professor Alexander Herzog, an oncologist who combined conventional treatments with alternatives. It cost us £30,000 for a three-week stay in a hospital.

She underwent various alternative treatments, including hyperthermic treatment to heat up her tumours to 113 f (45c) to kill them.

To be fair, when Professor Herzog did a scan after three weeks and saw she had tumours in her brain, he said no more could be done and advised us to go home and spend time with our children.

However, Maggie still didn’t want to give up and the day after Boxing Day we drove from the UK with all the kids to another German clinic — run by a doctor who had reportedly ‘cured’ himself of stage 4 cancer with non-toxic treatments.

The clinic was only open during office hours, and on New Year’s Day Maggie fell unconscious. I had to call an ambulance to take us to hospital — I phoned a couple I’d met the day before in a children’s playground to interpret, as I had no one else to turn to. The hospital staff advised us to go home to England.

However, the clinic arranged a brain scan (it cost £1,000) and told her it showed she had no more tumours than previously — suggesting that the treatment they’d given her was working.

I arranged for the scan to be sent to our GP, who took it to a specialist in London, who said it showed more tumours than before: nine in her brain, ten in her bones and 12 in her lungs. The advice was to come home and have palliative care.

I was so angry, I asked the staff at the clinic if they were lying or just incompetent. But Maggie insisted on staying in Germany and continued with a variety of — in my opinion — quack treatments the clinic offered, including magnet therapy to shrink tumours. As an experiment, I put a compass beside the ‘magnet machine’ and it didn’t pick up any magnetic field. 

Another treatment Ms Thomas had was dendritic cell therapy, where cells were extracted from her blood, sent off to a lab to be concentrated, then injected back to ‘fight’ the cancer

Another treatment Ms Thomas had was dendritic cell therapy, where cells were extracted from her blood, sent off to a lab to be concentrated, then injected back to ‘fight’ the cancer

Maggie also had IV infusions of mistletoe — she was given these multiple times between January and her death in February.

Another treatment was dendritic cell therapy, where cells were extracted from her blood, sent off to a lab to be concentrated, then injected back to ‘fight’ the cancer. It sounded plausible but each injection cost £7,000 and she had seven or eight of them.

The total costs at the Cologne clinic were edging towards £90,000.

I begged Maggie to go home and tell the kids she was dying (they knew she was ill but not that she had a terminal diagnosis — by then they were back at home being cared for by relatives). But the clinic kept insisting she stay for more treatment, even though she was getting weaker all the time.

In the end I booked a Eurostar ticket for February 17 and decided to make the dash back to England, so Maggie could die at home with the children. She was dosed up with morphine for the pain and failing fast. It was very distressing.

I showed her pictures of the kids on my phone to try to keep her going but she died in my arms in the car on the Eurostar. I cried and screamed when I saw her head roll back — it was just too much to bear.

The total bill for Maggie’s private treatments in the UK and overseas was £350,000 — I am still paying off debts now. The billionaire paid around £150,000 and there were smaller donations from well-wishers but I was left to pay £200,000 and have only just about hung on to our house.

When Maggie died we owed £76,000 on credit cards alone.

I feel strongly that Maggie was exploited by quack medicine. I fully understand the desperation cancer patients and their families feel and there is nothing wrong with travelling overseas for cancer care, but it has to be a reputable hospital offering legitimate treatments.

Some of these alternative clinics are peddling quack cures and just extorting money from people.

£63,000 GOT CHARLIE HELP IN TURKEY 

Family ties: Charlie Ilsley (11) and his mother Toni photographed at their home in Reading

Family ties: Charlie Ilsley (11) and his mother Toni photographed at their home in Reading

Charlie Ilsley, 11, from Emmer Green, Berkshire, is undergoing cutting-edge treatment for brain and secondary spinal cancer in Turkey — this is costing over £81,000 and is being paid for by crowdfunding. Here, his mother Toni, 48, a pharmacy technician (who is married to Mark, 50, a builder, with whom she has two grown-up children, Oliver, 21, and Jess, 29), explains why the family have chosen this route.

Charlie was diagnosed with medulloblastoma, the most high-grade brain tumour found in children, when he was only eight, after he’d had weeks of unexplained vomiting and neck pain.

We were devastated but we were told he had an 80 per cent chance of survival if he had surgery followed by chemotherapy and radiotherapy. The treatment was tough going but he went into remission in 2015 — a fantastic result — and we got on with our lives.

Then last March a routine scan picked up five tumours on his spine; the cancer was back.

He started chemotherapy a week later but we were warned that if it didn’t work, he couldn’t have radiotherapy again as his cancer wasn’t suitable for it.

It was so surreal, as Charlie was so well — he was going to school, swimming, playing on his Xbox and not in any pain. But in July, when the chemotherapy hadn’t worked after three sessions, the oncologist said all they could offer was a different chemo that would buy him extra months at best.

Good times: Charlie pictured before his illness, age 5, while playing in his back garden

Good times: Charlie pictured before his illness, age 5, while playing in his back garden

The news hit us like a ton of bricks. We couldn’t believe it — it was too soon to be giving up on him and we wouldn’t accept it.

I joined an online community and found out about children with the same type of brain tumour having successful treatment with a targeted radiotherapy called CyberKnife in combination with the drug Avastin, which destroys the blood supply to tumours, and other chemo drugs.

I found out that CyberKnife is available in the UK on the NHS, but only if you meet certain criteria — or you can have it privately, at a cost of £30,000 plus.

Our NHS hospital turned us down. In desperation I emailed some private hospitals in the UK, asking if they treated children, but no one replied. I felt we couldn’t afford to wait.

Then another mum told me about the Memorial Hospital in Ankara, Turkey, which was offering children the treatment with CyberKnife, Avastin and other chemo drugs — we knew we had to give it a shot. It’s not an experimental treatment and there is an established protocol — it’s used in the U.S., for instance. It just isn’t available in the UK.

The only problem was the cost, around £80,000. We didn’t have that sort of money and would have had to sell the house, but my cousin Karen decided to launch a GoFund Me page.

We were amazed when the money started flooding in — we couldn’t believe how generous people were. Around £60,000 has been raised since it started in August.

The donations we have received included £20,000 from the boss of a hotel chain, who felt that the NHS was letting Charlie down. Another lady held an online auction and raised £5,000. The donations have kept on coming.

The hospital in Turkey agreed to give Charlie seven treatments. The consultant there says that if this is followed up with treatment using hs own stem cells to boost his recovery, it will give him a 60 per cent chance of survival. We flew out for his first treatment in August. Charlie’s NHS consultant said we were doing the right thing — her hands were tied by NHS funding — but I was still very apprehensive.

When we flew out to Ankara there was no one there to meet us holding up a name card, and I admit I started to worry it was a hoax. In fact a car was waiting outside. Two of the doctors speak really good English, as do some of the nurses, and we use Google Translate, too, so we get by. We’ve been back for six more sessions, one a month, and we go back at the beginning of February for an MRI scan.

If that shows he is in remission or close to it, they will give a high-dose shot of chemotherapy, followed by treatment with the stem cells they have collected.

Charlie hasn’t had any adverse reactions — we’re not putting him through unnecessary suffering, just giving him another chance — and he’s really well and able to play with his mates and go to school when he’s home.

The last scan in November showed the two tumours at the top of his spine have disappeared and the one in the middle has halved in size. His condition seems to be improving. His consultant says all the signs are good that the treatment is working — but only the next MRI scan will tell us that. I wish we hadn’t had to find out about these treatment options from other parents, rather than from my doctor. Why can’t they give parents and patients more guidance and support on what is available outside the UK?

There isn’t a whiff of quackery about the hospital in Turkey, but I’ve heard some horror stories of parents going abroad for treatment — one paid £250,000 upfront for treatment for their child at a U.S. hospital, then their consultant here refused to let them fly and the hospital wouldn’t give them a refund. They have had to charter a boat to take their child to Spain for the same treatment, which is working.

Crowdfunding has helped keep Charlie alive. We still need another £25,000 in donations to pay the total £81,000 bill. We hope it will cure him. 

gofundme.com/cyberknife-treatment- for-charlie

 

Read more at DailyMail.co.uk


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