Britons with eye cancer are turning to crowdfunding and selling their homes to pay for a life-prolonging procedure that should be free to the NHS.
The treatment, chemosaturation, gives patients an extra 15 months of life and in some cases even a cure. Based on this data, the NHS watchdog National Institute for Health and Care Excellence rated it cost-effective and approved it last year for patients with advanced disease.
But The Mail on Sunday has been informed that patients are paying six-figure sums in private chemosaturation clinics because NHS England, which manages surgical budgets, is refusing funding.
Janna Clark, 40, a mother of two from Norfolk, is trying to raise £120,000 online so she can undergo the procedure after discovering her cancer was terminal.
Janna Clark, 40, a mother of two from Norfolk, is trying to raise £120,000 online so she can undergo the procedure after discovering her cancer was terminal, pictured here with her partner Jay Wyatt, 43, and their two children, Bonnie , 14, and George, 10
Eye cancer patients have been forced to sell their homes to pay for chemotherapy, which will extend patients’ lives
“I know there is no cure, but I want to spend more time with my kids and this treatment could give me that,” says the former hairdresser.
Charities are calling on NHS England to pay for chemosaturation to give cancer patients more time with their loved ones.
‘Patients have sold their houses to raise the money. It’s heartbreaking,” said Jo Gumbs of cancer charity Planets. “It’s cruel that there is an approved treatment that can keep people alive, but they can’t get it. And the worst part is that there is no end in sight.’
About 700 Britons a year are diagnosed with eye cancer. It is usually treated with chemotherapy and radiotherapy, or surgery to remove the eye. But in half the cases, the disease can spread to the liver. When this happens, it is usually incurable – the majority of patients do not survive more than eight months.
“Once the cancer reaches the liver it becomes very aggressive and covers the entire organ with mini tumors meaning surgery is out of the question,” said Mr Neil Pearce, a consultant liver surgeon.
Chemosaturation can be a lifeline — if only temporarily — for patients in this situation.
Chemo drugs are usually given through an IV and create a toxic environment in the body, killing cancer cells. However, the powerful drugs also damage healthy cells and often cause side effects such as nausea and hair loss. It means there is a limit to how much chemotherapy can be given.
Chemosaturation works by delivering very high doses of chemotherapy directly to the liver while protecting the surrounding organs from the chemicals.
During the procedure, patients are sedated and an incision is made in the groin. A flexible tube with small balloons is inserted into an artery and guided upward until it reaches the liver. These balloons are then inflated to create space between the liver and adjacent organs. Then chemotherapy is delivered into the artery that supplies the liver, through another tube threaded through the groin.
“It’s 30 to 40 times the usual level that cancer patients can get,” says Mr. Pearce. If taken orally or intravenously, this level of chemotherapy can lead to catastrophic damage throughout the body.
Patients are also hooked up to a blood filtering machine to rid the liver of leftover traces of the harmful drug. The balloons are removed and after a night in the hospital, the patient can go home.
Doctors believe that patients need three rounds of treatment to be effective. Study data showed that 90 percent of eye cancer patients with liver tumors had tumor shrinkage after chemosaturation. Researchers found that two-thirds survived a year, and a third more than two years.
Last year, NICE concluded that chemosaturation was safe and effective. For medicines, such a decision means that patients will automatically receive the approved treatment from the NHS. But as it also involves surgery – and requires significant hospital resources – final approval for its funding lies with NHS England.
According to Jo Gumbs, NHS England has not provided a timeline for when patients can gain access, adding: ‘Meanwhile, private clinics are making huge sums of money while those who can’t afford it die.’
Janna Clark was diagnosed with eye cancer in February 2018, just a day before her 10-year-old son George was completely free of blood cancer. She says that due to the stress of caring for her son, she ignored the early symptoms. “I had a headache, dizziness, my vision was blurry, and I had flashes of light,” she says.
After doctors found the cancer, Janna underwent chemotherapy and her right eye was removed.
But in February 2021, scans showed the disease had spread to her liver. Last month she was told there was nothing more the NHS could do. Janna, who lives with her partner Jay, is now trying to raise money for three chemosaturation sessions at a London clinic, each costing £40,000. But with just £60,000 raised, Janna has been told she cannot book her treatment.
She says she doesn’t understand why patients don’t have access to chemosaturation: ‘There are so many expensive medicines available on the NHS, why did they decide not to fund them? It’s this or nothing for me. I don’t have long. I have to do my best to get extra time with my kids.’
A spokesperson for the NHS said: ‘The most recent clinical review found there is not enough evidence to show that making chemosaturation available on the NHS would benefit patients or represent the best use of resources.’
lFor more information about Janna’s campaign, visit justgiving.com/crowdfunding/janna.