Peter Kapitein founded Inspire2Live, a global patient advocacy organization with professional volunteers. As a patient advocate, he connects patients, researchers, clinicians, industry, and regulators to advance cancer research, treatments, and care. Peter lobbies public authorities, organizes congresses, and gives talks to improve patient quality of life. He co-founded Alpe d'HuZes, a charity raising nearly €200 million for cancer research. In 2012, he received an honorary doctorate for his work.
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President, Patient Advocate Inspire2Live, Amsterdam, the Netherlands
The tobacco industry, deadlier than the weapons industry, has caused millions of deaths and knowingly fostered addiction while governments continue to permit its harmful influence. The Economist's acceptance of tobacco funding highlights how entrenched this deadly industry remains, yet recent steps to sever ties with tobacco companies show a positive shift. Governments and society must now take...
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I have lymphoma. Is that my problem or that of my physician? Or perhaps the problem of research and industry? It is indeed my problem and I need my physician badly. She can only do her work when...
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On 11 November 2021, Inspire2Live organised a congress in Amsterdam to determine the best patient screening, diagnosis, and treatment techniques for prostate cancer and how we can offer them to every
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When Inspire2Live organised its first Annual Congress in 2011, José Baselga was one of the speakers, and he opened his speech with the following statement: “We are not meant to be here for 1- or...
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In our world live 7.8 billion people. Pharma only focuses on cancer treatments for 1.6 billion people. How can the other 6.2 billion people hold no interest for pharma? Even from a commercial perspec
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In September of this year, our group of international patient advocates and scholar-activists had a congress at the Royal Netherlands Academy of Arts and Sciences. We had several good discussions...
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Is there a time after COVID-19? Do you regularly hear the question of what we will do after COVID-19? Or what should we do? This is a strange question, because there will be no time after Corona
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Scientific knowledge eradicated smallpox, a painful and disfiguring disease which killed 300 million people in the 20th century alone. In case anyone has skimmed over this feat of moral greatness,...
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In the past decades something happened in healthcare that doesn’t benefit patients. Actually, it is what we patient advocates call ‘Dying is safer’. For some of the stakeholders in the medica
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Let’s start with a quip. When you want to become an oncologist, you only need three or four years of primary school. You need to be able to read and write. The pathologist will tell you what...
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“Cancer is a mobile disease. It changes while you look at it. Treat it like tuberculosis; 4 drugs for one year, at the same time!” Professor David Tuveson, CSHL We do
READ MOREIn Latin America there is a big need for prevention as many people do not have access to treatment due to high costs. Prevention not only in terms of becoming sick but also of not paying more than necessary. The situation varies across the continent, and in some countries there are good working examples. Still, the challenges of cancer in Latin America demand immediate action. By joining forces of...
READ MOREA veteran patient advocate questions some of the hyped patient-engagement concepts and the reality of their practical applications within the ‘medical industrial complex’, and offers some strategies to change ‘the way we work’. Key Points In the medical industrial complex, stakeholders are distracted from the essence, i.e. the patient. There are many obstacles on the way to...
READ MOREWith artificial intelligence and personalised medicine playing an increasingly important role in today’s healthcare, one cannot help but wonder about the regulation of these fields. An expert analyses the pros and cons of the ‘checks and balances’ system that exists today and argues that too much regulation may result in negative patient outcomes. Key Points The two sides of any regulation,...
READ MORESummary: Cancer affects everybody's life at some point. ‘The Death of Cancer,' written by one of oncology's leading figures, Dr Vincent T. DeVita, documents his own journey for the cure. Dr Peter Kapitein gives his personal review on the book. In 2005 I was diagnosed with lymph gland cancer and became interested in the medical industrial complex: everything that has to do with healthcare...
READ MOREQuestions that need to be answered taking into account benefits for the patient. Academic rivalry is not in the patient’s interest, and as long as patients are not involved in healthcare and healthcare research on an equal basis there will be no solutions for the questions that need answering. Leó Szilárd wrote in 1948 The Mark Gable Foundation (Szilárd 1961). When asked by a wealthy...
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The European Union’s (EU) General Data Protection Regulation (GDPR) took effect on 25 May. Directly binding and applicable in all EU states, the GDPR aims to protect the data and privacy of the...
READ MOREWhat could the new data protection law mean for health sector leaders? The European Union’s (EU) General Data Protection Regulation (GDPR) will take effect on 25 May 2018, replacing the 1995 Data Protection Directive. Directly binding and applicable in all EU states, the GDPR aims to protect the data and privacy of the European population by giving control back to citizens and to make the regulatory env
READ MOREIn healthcare patients are not consumers with the economic power they have in other markets, but the arguments for patient involvement are compelling. "Healthcare is like dog food business." Here we hear an American explaining that in healthcare, just like in buying dog food, the consumer is not the one who determines what is on the menu, nor the one who pays. Patients are not consumers in the...
READ MOREA reminder about who is at the centre of the complex healthcare hierarchy and industry – the patient. In May I was present at the excellent congress “Responsible Research and Innovation in the Health Industry”, organised among others by the EU Economic and Social Committee. I had the honour of speaking about my ideas on innovation and the obstacles that are connected with it. Of course...
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I was struck by a press announcement of the United States Food and Drug Administration of 23 May 2017: ‘ FDA approves first cancer treatment for any solid tumour with a specific genetic feature...
READ MOREPatient Advocate, Inspire2Live, Amsterdam, the Netherlands If about us, not without us Healthcare exists because we patients exist and therefore we should not only be asked about what we want, we should also decide about all matters in healthcare. Simply for the sake of the patients and their loved ones and for the sake of lower costs in healthcare. I’m...
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“Good morning Mr. Smith. Good to see you, how are you doing? You’re looking for a new car? That’s good news. We decided that it’s going to be a Ford Focus, ST, 2.0 Eco-boost, 184 KW, 6-gear. Let’s...
READ MOREValue-based healthcare (VBHC) starts with the patient and uses patient-oriented outcomes to improve care. Not everything can be expressed in figures: psychological and sociological factors play a role as well. The medical-industrial complex does not always benefit from VBHC, which is the reason why the different interests are not always advantageous to the patient. With an approach that starts with...
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