The interview with Inspire2Live Ambassador Peter Kapitein as published in Dutch Newspaper Volkskrant on january 22, 2011. Translated from Dutch.
An Interview with Peter Kapitein by Ellen de Visser
de Volkskrant, January 22, 2011
Cancer Can Become a Chronic Illness
High doses of chemotherapy and even his brother’s stem cells weren’t enough to save Bas Mulder. He died four months ago of lymphoma, at the age of 24. Peter Kapitein, now 50, was given the same diagnosis in January 2005. His treatment was identical, but he’s still alive.
The two men knew each other from Alpe d’HuZes, an annual event in which a growing group of cycling enthusiasts ride up the Alpe d’Huez [a popular stage in the Tour de France] to raise money for cancer research. Speaking at his young cycling friend’s funeral, Kapitein promised to answer the obvious question: Why was he still alive when his friend wasn’t?
That question became the seed of a remarkable initiative. Together with friends Coen van Veenendaal and Jan Gerrit Schuurman, Kapitein toured the globe last year, asking the world’s top cancer experts if they would be willing to work together to end cancer as a deadly disease within ten years. The response was unanimously positive.
Last week in Amsterdam, those experts came together for the kickoff of the programme Understanding Life! At the invitation of the three Dutchmen, eighty renowned scientists, some of them Nobel Prize-winners, met to formulate a joint approach. ‘I’m still astonished,’ says Kapitein, a few days after the close of conference.
How did you manage to get the world’s greatest experts together?
‘The first person I went to was my boss, Nout Wellink [president of De Nederlandsche Bank, where Kapitein works as a project manager]. I told him: “We have this great idea: we’re going to solve the problem of cancer on a world level.” And he smiled and said: “You know what? I believe you.” Wellink gave us permission to use his name, and that led us to Robbert Dijkgraaf, the president of the Royal Netherlands Academy of Arts and Sciences. He put us in touch with Anton Berns from the Netherlands Cancer Institute (NKI), who introduced us to two Nobel Prize-winners. Then it really snowballed. People just kept giving us new names.’
Why did Wellink believe you?
‘He’s a member of the advisory board of Alpe d’HuZes. The year I asked him to join, 2006, we raised €350,000. That’s now the amount that comes in every week. This year 5,000 cyclists will participate and we expect to bring in over €20 million. He knows how dedicated we are and lets me work on this during business hours.’
How did the experts respond to your idea?
‘Aside from one or two sceptics, almost everyone wanted to participate. In the past year we’ve visited the best cancer centres in the world. We started with Nobel Prize-winners Paul Nurse, Harold Varmus and James Watson, the discoverer of DNA. Then we travelled to San Francisco, Seattle, San Diego, Baltimore, Boston, Paris, London, Berlin, Heidelberg and Barcelona. We’re still planning to visit Stockholm, Milan and Lisbon.
Everyone told us the same thing: there’s already so much expertise available, your goal is absolutely realistic. To turn cancer into a chronic illness, the biggest thing that’s still needed is teamwork. In Cambridge we visited the British oncologists Sir David Lane and Sir Bruce Ponder, and Lane told us: “It will be a scandal if we can’t implement the knowledge that we already have.” But that’s what’s happening right now. There’s so much that we already know that’s not reaching the patients.’
Why would these researchers need outsiders to get them to work together?
‘That was the first thing Nout Wellink asked when we organised a meeting of experts from the Netherlands: “Why hasn’t the field already come up with this?” What we heard was an incredible story that made it clear how much the medical world focuses on individual institutes and researchers. So many parties have to work together: scientists, doctors, industry, patient advocacy groups. It’s impossible for any one group to do it alone. So we have taken on the role of catalyst. We work from a patient centred perspective and have a talent for organisation.’
Are medical researchers too self-centred?
‘No, on the contrary. After all, last week they were all here working together. But they operate in a system that rewards individual point-scoring. In other fields, the authors of scientific articles have their names listed alphabetically, but in medicine they’re listed in order of importance. That leads to power struggles. So does the distribution of research money—which then can only be spent within that one institution. Alongside raising new funds, we want to help make research projects more effective, discourage duplicate projects and promote the exchange of data between researchers.
‘Take the sequencing of tumour genes. Universities all over the place are working on the structure of tumour cell DNA, but 90 per cent of what they’re doing is redundant. The available budget could be much more efficiently distributed if you got researchers to coordinate their efforts.’
Is that what they themselves want?
‘We’re setting a good example this year in the Netherlands by using money from Alpe d’HuZes to allow three research centres to work together. The Netherlands Cancer Institute, the Erasmus Medical Centre [in Rotterdam] and the University Medical Centre Utrecht are starting a joint project to do DNA research with cancer patients. They will run tumour cells through the computer, so to speak, so the computer can decode the DNA mutation that is making the cells metastasise. Then they will see if that process can be influenced with a treatment designed for that particular individual.’
Why is Alpe d’HuZes so successful?
‘The Alpe d’Huez is the “Dutch” mountain in the Tour de France. Gert-Jan Theunisse and Steven Rooks both won stages there. That still appeals to people’s imagination. Every year on a Thursday in June, teams of cyclists attempt to climb the Alpe d’Huez six times in a row, for a total altitude gain of over 6,000 metres. Teams are sponsored per metre and must bring in a minimum of €3,000. Last year we had teams participating from almost all the university medical centres in the Netherlands.
‘Alpe d’HuZes has brought forth similar campaigns in other countries as well. Those climbs also have 6,000 metres as their goal, like Belgium’s Ven2 4 Cancer, which involves climbing the Mont Ventoux four times.’
How do they feel in the French Alps about all these Dutch people cycling up their mountain in one day?
‘Our course director goes there to make arrangements with the authorities, because you can’t just show up with 5,000 people. The problem is that the route runs through three municipalities. We start in the village of Le Bourg d’Oisans. Halfway up the mountain we pass through La Garde, and after 21 curves we finish in the mountain resort of Alpe d’Huez. We need a permit from each of the three mayors, and every year the mayor of La Garde objects. There’s nothing for him in it, of course, because we ride through his village without stopping. Every year, it gets resolved in the best French tradition. The other two mayors take him out to dinner, they have a glass of wine, and they say: “Come on, François, don’t be a pain in the ass.” Then it all works out. “But this is the last time,” he always says.’
In two weeks, Kapitein’s memoirs will be published by Uitgeverij Karakter under the no-nonsense title I Have Cancer. He had competed in 200 triathlons when at age 44, after a routine cholesterol test, he heard that he had cancer. The treatments were so intensive that a couple of times he almost didn’t make it.
The cancer is under control now, but it will never go away. ‘If you analyze the DNA of my lymph nodes, you’ll find a mutation that will always keep causing problems. That’s why I say I’m living with cancer. It’s cancer without the illness.’
Never, ever quit! For years those were the words Kapitein repeated to himself whenever he found himself struggling during a triathlon. It was a line from a ‘truly awful B movie’ he saw once thirty years ago. It was his motto for going through cancer treatment, and now it’s the slogan for the programme to bring scientists together.
That’s easy for you to say: you’re still here.
‘But I’ve always looked at things that way. I have an incurable optimism that I inherited from my mother. I can turn the worst situation into a great starting point. I want to show people that you can lead a good and happy life with cancer, even if that life is short.’
Are you never afraid?
‘Not anymore. For a long time my first thought when I woke up in the morning, before I even turned the alarm off, was, “Shit, I have cancer.” Now I don’t think about it until I’m on my bicycle on the way to the bank. But yes, of course I’m afraid of dying. In my thoughts I always seem to be in a hurry. In some ways I’ve lost patience. When I want something to happen, I’m not willing to wait.’