Dad ‘denied’ cancer treatment on NHS ‘due to postcode’ forced to go abroad for £50k therapy
Adam Gray needs to raise £50,000 to fund his treatment in India
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Adam Gray, 36, from Harrogate, North Yorkshire, was diagnosed with stage four neuroendocrine cancer in 2019 - a rare tumour that can develop in many different organs of the body. He had “too many tumours to count” across his liver, lungs and pancreas and was told that he had only had months left to live.
Adam underwent extensive surgery and chemotherapy, and was miraculously left tumour-free last year following four rounds of peptide receptor radionuclide therapy (PRRT).
But sadly just three months later and days before Christmas, the 36-year-old was given the “devastating” news that he had 12 new lumps in his liver and will likely need third-line chemotherapy to treat them. In a further blow, he claims NHS guidelines England prevent cancer patients from accessing more rounds of PRRT, which means he needs to go abroad for treatment.
Adam is now desperately trying to raise £50,000 to fund a trip to India for PRRT therapy, which he hopes to complete by the end of this year.
He said: “It came as a shock to my oncologist, and then it became clear that under the NHS guidelines, I was not allowed more than four rounds. But the thing that makes me mad is if I had a Welsh or Scottish postcode, I could have accessed the treatment.
“It doesn’t make sense between the three countries that because I’m in England I’m having to fund this myself. It doesn’t sit with me very well. It’s bizarre that in this day and age a treatment that is so effective for my kind of cancer isn’t available in a first-world country - but I can access it if I’m willing to pay for it in India.”
‘I didn’t stop crying for a long time’
Adam had recently married his childhood sweetheart Christine, 35, who was pregnant with their daughter Amelie at the time of his diagnosis four years ago, which left his perfect life “flipped upside down”.
He visited doctors in July 2019 with a stomach ache, before being told 48 hours later that he had a rare, often incurable form of cancer, producing dozens of tumours.
The fit and active lawyer, who used to cycle nine miles to work each morning, endured four types of chemotherapy, where he lost all his hair and shrunk down to nine stone (57kg). Surgeons also removed half of his liver and part of his pancreas, before they found several new tumours, including some in his chest and lymph nodes.
He was then introduced to PRRT - an internal radiotherapy treatment - by specialists and in September last year, he was amazed to learn that his scans showed he was tumour-free. The news was made that much sweeter as the couple welcomed their second child, Wilfred, in August, dispute believing years of chemotherapy would leave Adam infertile.
Unfortunately the good news was short lived as Adam’s world “fell apart again” in December when doctors discovered 12 new tumours in his liver.
He said: “It was absolutely devastating. I didn’t stop crying for a long time. I’d gone back to work while I was on radiotherapy to support the family. And I called my boss when it happened and sobbed down the phone to her.
“Usually when we’d have a call with the oncologist, I’d arrange for the kids to be out, as one is only three and the other is seven months. We didn’t want them to know what’s going on with daddy at the moment. But because it had been three months, we thought it was going to be positive news.
“We had a Zoom call on the laptop in the kitchen, and that’s when he told me I had 12 new tumours, and my world fell apart again.”
Adam said he was ready to undergo further rounds of PRRT radiotherapy but was told he could not qualify for any more doses under NHS guidelines in England. After looking into various options, he has decided to fly to India on 25 April for his first treatment and is aiming to raise £50,000 for three further rounds.
He explained: “We were put in touch with a doctor in Germany, who can administer the Alpha PRRT, but for one round of treatment it was £30,000. So we looked elsewhere and found that it cost about £15,000 in India per round. I’ll need to be there for two weeks, and I’ll be radio-active following the treatment
“I’ll be flying out to Delhi on my own and I’ll be missing my wife’s birthday. So I won’t be around my kids or family.”
A spokesperson from NICE (the National Institute for Health and Care Excellence) said it followed European Medicines Agency regarding the drug’s usage.
They said: “When deciding the recommended dosage and treatment plan, our committee has followed the drug’s licence with the European Medicines Agency. It is important to point out the drug’s manufacturer said in its submission to NICE that retreatment with lutetium was not recommended clinical practice.
“Our guidance is reviewed when new evidence becomes available which might change the committee’s recommendation. NICE produces medicines guidance for England and Wales. Scotland’s medicines are approved by the Scottish Medicines Consortium.”
Adam has almost reached his fundraising goal, but further donations can be made via his JustGiving page.