Given year to live in 2011, John fought for drug denied to patients here... his story proof postcode lottery must end
A father-of-five who had been given a year to live - but had his life prolonged after fighting to access a drug denied to patients in Northern Ireland - has called for equal treatment for all cancer sufferers.
John McAllister (57) from Belfast was told the devastating news that he was seriously ill with cancer three-and-a-half years ago.
Doctors told him that it had spread throughout his body, that chemotherapy was the only option left, and that he probably had less than 12 months to live.
But he fought to get access to a life-extending drug called Ipilimumab, which was made available to him – and duly made a massive difference.
So much so that he completed a 200-mile charity cycle from London to Paris last month.
His case has led to further pressure on Health Minister Edwin Poots from campaigners to introduce equal access to treatment.
The campaign, led by Cancer Focus, is calling for patients in Northern Ireland to be given the same access to 38 cancer medicines as patients in England.
Due to the Cancer Drugs Fund (CDR), which provides an additional £200m each year to enable patients to access drugs that are not routinely funded by the NHS, currently four times as many patients in England are able to benefit from these new cancer drugs than in Northern Ireland.
The decision to create a similar fund in the province – which would cost an estimated £8m – is a devolved matter and must be approved by the Executive.
John has metastatic malignant melanoma – melanoma that has spread – and there is currently no cure.
He had to make an independent funding request (IFR) in a bid to try and receive the medication.
This is currently the only way a patient here can access the drugs.
John was first diagnosed in March 2011 with the rarer type of skin cancer.
"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 shock," he said.
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.
"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."
Within weeks 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, John arranged a private visit to the Royal Marsden Hospital in London to get a second opinion.
Treatments recommended included the Ipilimumab, which was unlicensed by the National Institute for Health and Care Excellence (NICE), but was available to patients in England through the CDR.
"When we went back to the doctors at Belfast City Hospital, they said it was highly unlikely I would be given this drug due to its high cost," he said.
The family were left "devastated".
John explained: "It was then 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 the Assembly and we also managed finally to get an IFR 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."
Nicki said: "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.
Cancer Focus NI is now seeking an urgent meeting with the First and Deputy First Minister. The charity has also asked Health Minister Edwin Poots to provide clarification around a review to look at the availability of cancer drugs. In June he announced a review of the IFR process.
Roisin Foster, chief executive of Cancer Focus NI, said: "Campaigners for equal access to cancer drugs are frustrated at the lack of any apparent movement on this issue since the review was announced."
A spokesman from the Department of Health said: "The terms of reference for the evaluation of whether the IFR process is meeting its objectives are currently being finalised by the department. They should be released in the near future." It is planned that the evaluation will be completed by the end of the year.
- Cancer Focus NI urges the public to back the Equal Access Campaign at: www.equalaccessni.org
Cancer Drugs Fund... The facts
Q. What is the Cancer Drugs Fund?
A. The Cancer Drugs Fund is money Westminster sets aside to pay for cancer drugs in England that haven't been approved by the National Institute for Health and Care Excellence (NICE) and unavailable from the NHS. The aim of the fund is to make it easier for people to get as much treatment as possible.
Q. Why is a Cancer Drugs Fund not available here?
A. The decision to create a Cancer Drugs Fund is a devolved matter.
Q. How much would it cost?
A. Around £8m. The Health Minister Edwin Poots has stated that the reintroduction of prescription charges – either a £3 charge per script or an annual £25 'capped' charge – could pay for the fund. It is understood Sinn Fein and the SDLP are not in favour of re-introducing prescription charges. They believe it could be funded through the Pharmaceutical Price Regulation Scheme (PPRS), which controls the prices of branded drugs sold to the health service and pharmaceutical industry. Around £2.8m was returned through a scheme in the last financial year.
Q. How can patients here access unrecommended NICE cancer drugs?
A. The Health and Social Care Board (HSCB) has a process called the Individual Funding Request (IFR). A clinician makes an application. They must prove the patient is an "exceptional" case.