Inspire2Live works on a book for cancer patients and their loved ones. We think that the high incidence of cancer, combined with its devastating and life-changing impact warrant a book dedicated to what it means to be a patient.

There are a number of sources of accessible and objective information about the medical and scientific aspects. We cite as an example the excellent website www.kanker.nl (in Dutch). Also, many highly informative books are available, written by patients, about their personal “travel experience” with the disease.

What do we intend to add to all this? Two things. First, an overview of the disease, its treatments and some practical information. The second objective is that the patient should be the one who is at the center of attention of this vast army of medical professionals, scientific researchers, developers of pharmaceuticals, regulators and managers. For all the others, what is at stake is professional pride, income, reputation. For the patient, it is life itself; both its quality and length, that are at risk. ‘Patient First!’ means that the patient has a right (and a duty) to claim an active and leading part in directing and deciding on treatments. The patient does not take over the role of the professionals and it also does not mean that the patient should be distrustful of their analysis and advice, but it does mean that it is the patient who sets the priorities and criteria that she is considering before making her decision based on correct information (which is not always available for patients at critical moments).

Consider the recurrence of a tumor. The routine prescription would be a certain chemotherapy, that is known to be effective in 20% of patients, but that produces significant side effects and risks for all patients. We would consider it a normal question by the patient if she does belong to the 20%. The specialist’s answer might be: “We don’t know, because that would require Whole Genome Sequencing and that is not part of the protocol and therefore not reimbursed.” We would consider it a desirable reaction by the patient to say: “In that case I demand Whole Genome Sequencing and the insurer to pay for it, because the insurer stands an 80% chance of paying for the genome sequence and not paying for the treatment if the prediction turns out to be that the treatment would be ineffective, thereby saving a significant sum of money. If necessary I will take the insurer to court over this.”

This is just a fictitious example of the type of decisions and frictions that occur every day. Patients may have medical needs that are not covered by the protocol and therefore not covered by insurance. But medical science is developing quickly into areas like personalized medicine that create new and better options for patients, while the protocols and routines of medical practice are slow to actually bring this to patients. We think it is reasonable for patients to demand the cooperation of all stakeholders to produce the best diagnostics and treatments that are possible, even if not yet generally available. That is what we mean by “Activism” and that is ultimately what we aim and hope to inspire.

We will mobilize our patient advocates and our network of medical and scientific friends to produce a book that is compact, to the point and inspiring. We will write it in Dutch but hope to find sponsors for other languages.

Peter Kapitein,
CEO and Patient Advocate Inspire2Live