Pioneer patient says stance on breast cancer treatment is discriminatory
EXACTLY 12 months after being diagnosed with breast cancer in May 2018, Jan Johnson was given the all-clear at the Rutherford Cancer Centre in Newport.
She was the first person in the UK to be treated for breast cancer using proton beam therapy, a treatment that is widely used in the United States and Europe but is classed as “experimental” and inappropriate for many cancers in the UK.
“Radiotherapy travels right through the body, but proton beam just hits the tumour headon like a bus,” said Mrs Johnson.
“Cancer picked the wrong person. I didn’t crumble, I just thought, ‘This is not going to beat me’.”
The treatment was paid for privately and cost £66,000. Mrs Johnson has been in dispute with her healthcare insurance company, BUPA, which has declined her claim on the basis that the treatment is “experimental and unproven” for use on breast cancer.
“Nobody has £60,000 just lying around, but it’s not about the money, it’s the principle of it,” Mrs Johnson said.
Her husband took £20,000 out of his pension to pay for Jan’s treatment and she has spent more than £600,000 insuring herself and her family with BUPA over the past 30 years.
Proton beam therapy differs from radiotherapy, which uses X-rays to deliver radiation to a tumour, because it uses a concentrated beam of protons to target the precise area a tumour is growing, causing less damage to surrounding tissue.
Not all types of cancer can be treated with proton beam therapy, it can depend how close a tumour is to the heart or other major organs. Mrs Johnson admits she was “lucky” that the tumour in her right breast did not sit close enough to her heart to make the treatment too dangerous.
A state-of-the-art £17m proton beam machine was installed at the Rutherford Cancer Centre in Newport in 2018, but NHS guidelines say the treatment is “only suitable for certain types of cancer, such as highly complex brain, head and neck cancers and sarcomas”.
In total, Mrs Johnson had 25 sessions of proton beam therapy, each lasting only three to five minutes. She experienced no adverse side-affects.
“You could have an appointment [for proton beam therapy] at 5pm and go out partying in Cardiff after if you wanted to,” she said.
In April 2018, BUPA announced a partnership with a clinic in Prague to offer their members proton beam therapy for certain cancers, particularly ocular tumours.
Dr Tim Woodman, BUPA UK Insurance medical director, said: “I’m delighted to hear Mrs Johnson’s treatment has been a success. Proton beam therapy is not proven to be effective for any breast cancers which are different to other types such as those of the brain, head and neck, where proton beam therapy is more effective than radiotherapy.
“This is why the National Institute for Health and Care Excellence (NICE) and others don’t approve its use for breast cancer. Her oncologist at the time agreed.
“Bupa’s ‘Cancer Promise’ means that all our customers have access to support and advice from a specialist oncology team and, where needed, support for those dealing with diagnosis and treatment of cancer.
“We cover proton beam therapy for eye cancer and some other cancers, where medical evidence shows that it is more effective than radiotherapy.”
Mrs Johnson saw an NHS consultant and had a second opinion from a specialist at London’s Harley Street oncology clinic, where she was advised to have chemotherapy, before deciding to pursue proton beam therapy privately.
“To pay for proton beam therapy for certain types of cancer is discriminating against breast cancer patients,” Mrs Johnson added.