Dominic Nutt: Our cancer care should not be a lottery

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I OWE my life to luck. Three years ago, aged 45, I was diagnosed with a rare cancer. For weeks, I had been complaining of a stomach pain and my wife could tolerate my moaning no more and forced me out the door to see our family doctor.

She immediately diagnosed appendicitis and I was immediately admitted to hospital. But it turned out there was nothing wrong with my appendix – at least there was no sign of appendicitis.

However, doctors did find a 12mm neuroendocrine tumour on it. I was told that this could not have been causing me the pain. A few weeks later, as a precaution against the cancer already having spread to nearby lymph nodes, I had a large section of my colon removed.

It was discovered the cancer had spread a little. Had I not had my appendix removed and then part of my colon now I would be receiving palliative care – trying to extend my life by a few years, rather than living with the expectation that I will see out my full term.

My story – a story of random survival – got me thinking and researching. It turns out that luck is built into the system and survival can depend on where you live.

It is broadly acknowledged that survival rates in the UK, though improving, lag behind many northern European countries.

MacMillan Cancer Support has said it was “shameful” that “people were dying needlessly” claiming the chances of surviving five of the most commonly occurring types of the disease in the UK trail at least 10 years behind many comparable European countries.

A 2014 study in the health journal The Lancet of more than 25,000 cancer patients in 67 countries concluded that the “international comparison of survival trends reveals very wide differences that are likely to be attributable to differences in access to early diagnosis and optimum treatment.”

In other words it’s about access to the best drugs available. Some patients get them, others don’t.

There is a new internet-based business that is trying to make all the best treatments available to all patients, wherever they are in the world.

Dutchman Sjaak Vink has set up a new business – LoveSteve.com – to ‘democratise’ access to lifesaving treatments to cancer and other fatal diseases. Mr Vink and his co-founder Richard Stokvis say they want a world where any patient can get access to the best and most innovative, legal and regulated treatments.

“We are the fastest lane for the most innovative medicines that can be made available within global legal and regulatory frameworks,” says Mr Vink. “We use any and all relevant regulations, such as Expanded Access Regulations, Compassionate Use Regulations, Early Access Regulations, and the like.”

The array of statutory authorities, legal hurdles, and administrative obstacles are bewildering.

Some drugs for life-threatening diseases are available in one country but not in others. They have been approved by the relevant regulatory authorities – the FDA in the US, for example – and are in widespread use.

But regulatory authorities in other countries may not have licensed them for use, perhaps because the cost is considered too high, or licensing systems are slower. Mr Vink says his mission is to help those who urgently need the best treatment, get it and get it fast. LoveSteve is the community marketplace where you can buy what you need to help you get better or to more comfortably manage your condition.

“We want to make all diagnostics and medicines accessible to everyone – no matter who they are, where they live or how much they earn. In short, we want to democratise medicine for every single person on this planet,” he says.

“We from serve patients and doctors globally. We intend to have support teams in place in every time zone in the near future. I’ve been to too many funerals. We can save lives.”

I could not agree more – cancer care is a global challenge. It should not be a lottery.

Dominic Nutt is a freelance communications and campaigns consultant.