Brits with eye cancer are crowdfunding and selling their homes to pay for a life-prolonging procedure that should be free for the NHS.
The treatment, chemosaturation, gives sufferers an extra 15 months of life and even a cure in some cases. Based on that data, the NHS spending watchdog, the National Institute for Health and Care Excellence, judged it cost-effective and approved it for patients with advanced disease last year.
But The Mail on Sunday has learned of patients paying six-figure sums for chemo saturation in private clinics because NHS England, which controls surgical budgets, refuses to fund it.
Janna Clark, 40, a mother of two from Norfolk, is trying to raise £120,000 online so she can have 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 have the procedure after discovering her cancer was terminal, pictured here with her partner Jay Wyatt, 43, and their two children Bonnie, 14, and Georg, 10
Eye cancer patients have been forced to sell their homes to pay for chemotherapy, which prolongs patients’ lives
“I know there’s 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 urging NHS England to agree to pay for chemo-saturation to give cancer patients more time with loved ones.
“Patients sold their house to raise money. It’s heartbreaking,” says Jo Gumbs of cancer charity OcuMel. “It’s cruel that there is an approved treatment that can keep people alive but they can’t get it. And the worst thing is, there is no end in sight.”
Around 700 Britons are diagnosed with eye cancer each year. It is typically treated with chemotherapy and radiation therapy or surgery to remove the eye. But in half the cases, the disease can spread to the liver. When this happens, it’s usually incurable – the majority of patients don’t survive more than eight months.
“Once the cancer has reached the liver, it becomes very aggressive and covers the entire organ in mini-tumors, which means surgery is out of the question,” says Neil Pearce, a consultant liver surgeon.
Chemosaturation could be a lifeline for patients in this situation – if only temporarily.
Chemo drugs are usually given through an IV drip and create a toxic environment in the body that kills 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 large doses of chemotherapy directly to the liver while protecting surrounding organs from the chemicals.
During the procedure, patients are sedated and an incision is made in the groin. A flexible tube with tiny balloons is inserted into an artery and pulled up until it reaches the liver. These balloons are then inflated to create space between the liver and adjacent organs. Next, the chemotherapy is given into the artery that supplies the liver through another tube that is passed through the groin area.
“That’s 30 to 40 times the usual levels that cancer patients could reach,” says Mr. Pearce. If taken orally or intravenously, this chemotherapy could cause catastrophic damage throughout the body.
Patients are also hooked up to a blood filter machine to rid the liver of any remaining traces of the harmful drug. The balloons are removed and after a night in the hospital, the patient can go home.
Doctors believe patients need three rounds of treatment for it to be effective. Study data showed that 90 percent of eye cancer patients with liver tumors experienced tumor shrinkage after chemosaturation. Researchers found that two-thirds survived a year and a third more than two years.
Last year NICE concluded that chemo saturation is safe and effective. For medicines, such a decision means that patients automatically receive the NHS’s approved treatment. However, as it is also an operation – and requires significant hospital resources – final approval for funding rests with NHS England.
According to Jo Gumbs, NHS England has not offered a timetable for when patients can gain access, adding: “Meanwhile, private clinics are making huge sums of money while those who cannot afford it die.”
Janna Clark was diagnosed with eye cancer in February 2018, just a day before her 10-year-old son George was given the all-clear about blood cancer. She says that due to the stress of taking care of her son, she ignored the early symptoms. “I had headaches, dizziness, blurred vision and flashes of light,” she says.
After doctors discovered 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 £40,000 chemosaturation sessions at a London clinic. But with just £60,000, Janna has been told she cannot book her treatment.
She says she can’t understand why patients don’t have access to chemo-saturation: “There are so many expensive medicines in the NHS, why is it this one they don’t want to fund? It’s this or nothing for me. I don’t have long. I have to try to do my best to have more time with my kids.”
An NHS spokesman said: “The most recent clinical review concluded that there is insufficient evidence that the provision of chemo-saturation in the NHS benefits patients or represents the best use of resources.”
lVisit justgiving.com/crowdfunding/janna to learn more about Janna’s campaign.
