Proof that the proton cancer cure Ashya’s parents were fighting for CAN save lives
LUCY THOMAS is a bright, energetic, little girl, who’s excited about starting Year Four at school this week. So it’s hard to believe that just two years ago, she was battling cancer. At the age of six, Lucy’s parents noticed a lump in her nose, after she started complaining of pain there. Within days, they received the terrifying news that Lucy had rhabdomyosarcoma, a rare and aggressive type of head and neck cancer.
Doctors told the family that treatment options were limited. ‘They said the tumour was very close to her brain and her eyes, and conventional radiotherapy could damage these delicate areas,’ says Lucy’s mother Caroline, 42. ‘It might have affected her IQ, or caused additional tumours.’
But there was another option. Caroline and her husband Stuart, both bank workers, were advised to apply for funding for proton beam therapy — the same treatment that Brett and Naghmeh King begged for on behalf of their son, Ashya, now at the centre of a fraught legal battle. So, what is proton beam therapy? The treatment is a type of radiation therapy that uses beams of protons — or small parts of atoms — to destroy cancer cells, rather than high-energy X-rays, as with conventional radiotherapy. This means the rays are more focused, and less likely to damage healthy tissues around tumours.
Importantly, they also don’t leave entry and exit ‘burns’ in tissue in front and behind the target, instead dumping all their energy at the site of the tumour itself. This energy is what damages DNA, causing the cancer cells to stop replicating.
All this means that proton beam therapy is now considered the ideal option for childhood brain tumours and cancers of the head and neck.
‘ Proton beam therapy’s main advantage is that less normal tissue is irradiated,’ says Dr Yen-Ch’ing Chang, lead on proton beam therapy at University College London Hospitals.
‘This is a particular advantage in children and young adults. Irradiating healthy tissues in children and teenagers can result in significant long-term effects, such as problems with growth, IQ, development through puberty, hormone deficiencies and fertility, as well as an increased risk of the development of a second cancer.’
A low-energy form of the technology is only available in the UK to treat eye cancers, but patients with other forms of cancer can apply for NHS funding for high-energy therapy abroad, which can treat deeper tumours.
Lucy Thomas was one of about 150 British children each year who go abroad for proton beam therapy, at a cost of £100,000 each to the NHS.
THIS exceptionally high price means that many families — like the parents of Ashya King — do not receive funding, and are left to raise thousands of pounds to pay for the treatment themselves.
Four weeks after her diagnosis, having been referred to the Christie Hospital in Manchester, Lucy and her family were on a plane to Oklahoma to start the treatment. She has now been given the all-clear, although she is still having regular scans.
The Thomas family did not have to cover the costs, and Caroline says the inconvenience of having to uproot everybody was a small price to pay for Lucy’s recovery.
But she feels strongly that treatment should be available in UK hospitals as soon as possible.
She and Stuart put their lives on hold for the duration of the treatment, although their employers were very understanding and gave them both compassionate leave.
‘Being in America was hard — it would have helped if we had a family support network nearby, especially since Lucy was very poorly throughout her treatment,’ says Caroline, who lives with Stuart, Lucy, now eight, and son Owen, 11, in Ramsbottom, Greater Manchester. ‘She lost all her beau- tiful, blonde hair and a lot of weight because she was simultaneously having chemotherapy.’
Proton beam therapy has been around for the past 30 years but, in the past, it was low-energy — so the protons could only be fired into tissue close to the surface.
This is why, currently, the only proton beam therapy centre in the UK — at Clatterbridge, in Wirral — can only treat eye tumours, which are exceptionally rare.
In the past ten years, technology has moved on rapidly and highenergy beams can now be used for a wider range of tumours.
Most experts agree proton beam therapy is a powerful tool against hard-to-treat cancers and centres need to open in the UK urgently.
The treatment is set to be available on the NHS, but not for some years, and plans to open units at UCLH and the Christie Hospital by 2018 have run into problems.
Critics complain that a slow procurement process, which started in 2008, means that, when our proton beam therapy units open, they will lag behind the rest of the world. They say technology has already moved on significantly, and prices have tumbled.
The issue has been raised with the National Audit Office. The project to build two proton beam therapy centres is expected to cost £250 million per centre, with additional building costs on top. The chosen technology is vast in size: about 150 tonnes and the size of several double-decker buses.
‘The cyclotron technology these centres will have will soon be outdated,’ says Dr Nick Plowman, senior consultant in radiotherapy oncology at St Bartholomew’s Hospital in London and the Great Ormond Street Hospital.
‘It will be interesting to see if this procurement juggernaut will prove unstoppable, or the NHS will embrace new technology that will save half a billion pounds.’
Today, much smaller proton beam therapy machines than those planned for the UK are already being used in hospitals in the U.S. and the Far East. They also cost a fraction of the price.
The Mevion system, for example, made by U.S. company Mevion Medical Systems, costs £13 million and weighs just 19 tonnes.
Stewart Pegrum, global director of business development at Mevion, says his company was cut out of the procurement process on a technicality and blames overinflated NHS bureaucracy.
‘This system is approved by the U.S. Food and Drug Administration and is already widely used. We felt the procurement process in the UK failed to deliver for patients and taxpayers,’ he says.
PHYSICISTS at CERN in Switzerland have developed technology that could make proton beam therapy even more accurate and bring down prices further.
Advanced Oncotherapy, a UK company, is working with the team at CERN and hopes to bring its own proton beam devices to market by 2016.
The units will take up a fraction of the space of the machines planned for UCLH and the Christie Hospital and should be less than a fifth of the price.
Operational costs will also be significantly down as the system needs a lot less electricity.
Sanjeev Pandya, CEO of Advanced Oncotherapy, says its devices will be used mainly by private clinics in the UK and abroad.
‘We have letters of intent to purchase from the BMI and Spire hospital groups in the UK. We also have significant interest from hospitals around the world, including the U.S., Hong Kong, India, China and South America.’
In the future, proton beam therapy could take over conventional radiotherapy and become the gold standard for many types of cancer treatment for children and adults, says Professor Chris Nutting, consultant clinical oncologist at London’s Royal Marsden Hospital.
It is already being used in foreign clinics privately to treat prostate cancer, for example, as the prostate gland sits very near the bladder and the rectum — both easily damaged by radiation.
Breast cancer, lung cancer and various paediatric tumours are among cancers that may be treated with the new technology when it is more widely available.
When contacted this week, the Department of Health press office said NHS England was leading the procurement process and NHS England said the Department of Health was leading the procurement process, so neither would comment about when the NHS Proton Beam Centres were likely to open.
Meanwhile, Caroline and Stuart hope there won’t be significant delays: ‘The sooner this is readily available, the better. Luckily, we didn’t have to wait and we got the treatment for our little girl, who is back to her bouncy, healthy self.
‘ We’re so grateful, but not everyone is so fortunate.’