John’s equal access story

Cancer patient John McAllister (57), from Belfast, is delighted with the Cancer Focus NI campaign calling for equal access to cancer drugs for local patients.

The father of five was told three-and-a-half years ago that he was seriously ill with cancer, yet, with the help of life-prolonging drugs, has just completed a 200 mile charity cycle from London to Paris in July 2014.

John has metastatic malignant melanoma – melanoma that has spread from its original source – for which there is currently no cure. He and his family passionately want to have equal access to treatment that can improve his quality of life and prolong it in the hope that new and better drugs, or cures, are developed in the future.

Sadly John has already been forced to go through the trauma of fighting to get drugs to extend his life – drugs that were available, through the Cancer Drugs Fund, in England but not in Northern Ireland.

John, a fitness instructor, and his partner Nicki Darnbrook have a five-year-old son, Daniel. He also has four grown-up daughters and a four-year-old granddaughter, Dala. Naturally, he very much wants to be with his family as long as possible and see Daniel and Dala grow up.

Itchy mole

John first went to the doctor when a mole on his back became itchy and irritated. In March 2011, he was diagnosed with malignant melanoma, which is one of the rarer types of skin cancer but also the most aggressive, and had the mole removed.

“Initially we didn’t realise the possible consequences of having malignant melanoma,” John says. “When I went back in January 2012 for a check-up there were signs of cancer in the lymph nodes under my arm. That was when I realised that this was a cancer that could spread all through your body, killing you quite quickly. It was a massive, horrendous shock.

“In May 2012, I had a further four hour operation to remove the lymph nodes. That was pretty terrifying. I had no idea how I would come out the other side.”

Cancer spread

Unfortunately, by June further scans showed the cancer had spread in the arm and collar bone areas. He was told that further surgery would not be effective but he did get two courses of chemotherapy at Belfast City Hospital.

Because of the speed of the progression of the cancer and the negative prognosis, with his doctor’s support, John arranged a private visit to the Royal Marsden Hospital in London to get a second opinion and a range of treatments was recommended including the drug Ipilimumab, which was unlicensed by NICE but available to patients in England through the Cancer Drugs Fund.

“When we went back to the doctors at the City Hospital Belfast they said it was highly unlikely I would be given this drug due to its high cost. As you can imagine we were devastated that there might be a drug available which could extend my life for possibly many years, a drug that was already available to cancer patients in both England and the Republic of Ireland but not, apparently, to patients in Northern Ireland,” says John.

Fighting spirit

“It was then that the fight started. After lobbying our MLAs and generally making a nuisance of ourselves, we managed to get questions about the Cancer Drugs Fund raised in NI Assembly and we also managed finally to get an Individual Funding Request approved for Ipilimumab.

“The approval took two to three months, which was precious time to me. I was left anxious and worried about what I’d do if I wasn’t accepted. Incidentally, this drug was licensed by NICE a short time afterwards.”

Ipilimumab did extend John’s life, to the extent that he’s now fit enough to take part in a clinical trial at the Royal Marsden Hospital in London.

“It’s so unfair to force patients who are weak, tired and demoralised to fight for equal access. I can understand that a lot of people wouldn’t have the resolve to do that. Fortunately, I had tremendous support from Nicki and others.”

Clinical trials

Nicki says: “Although the best that John can hope for is to keep taking part in clinical drugs trials to stop the cancer progressing, he is coping with this amazingly well and has such a positive outlook on life.

“He’s a very keen cyclist and last month took part in the London to Paris 200 mile Cycle Challenge. This is a man who was told by his consultant a couple of years ago (our son was 3-years-old then) that chemotherapy was the only option left open to him and that he probably had less than 12 months to live.

“John and other patients have families who they love and who love them. It’s simply not right that they shouldn’t have the same rights as others because of a postcode lottery.”