Initiatiefnota ‘Invoering persoonlijk profielonderzoek bij kanker’

vlnr: Hayke Veldman (VVD), Pauline Evers (NFK), Léonie Sazias (50PLUS), Joba van den Berg (CDA)

After a year long of talks with politicians based on last years Inspire2Live annual congress, today, Feb 4th, Worldcancerday, the Dutch political parties of 50PLUS, CDA, and VVD will launch an initiative in which they ask the Minister of Health to make successful innovations available faster for everyone who might benefit from them and to increase the insight on proper use and dosage of cancer treatments by making personal profile analysis and tumor analysis available for every patient with metastasized cancer.

“I sincerely hope that cancer patients now and in the future will all get the proper diagnosis and treatment, while minimizing the side-effects” says Léonie Sazias, first speaker at our annual congress this year and Member of Parliament for the 50PLUS-party. Together with Members of Parliament Joba van den Berg (CDA) and Hayke Veldman (VVD) she offered today an initiative paper on implementing a personal profile test for cancer patients to Pauline Evers of the NFK (The Dutch Federation of Cancerpatientsorganisations).

Such personal profile analysis should become available to each cancer patient with metastasized cancer, prior to deciding on the treatment. It should prevent over- and undertreatment and negative side-effects and it should prevent administering treatments that won’t benefit the patient.

The initiative shows that in common practice there is only limited insight on proper use and dosage of medical treatments for cancer. To gain such insights, ones personal and unique DNA-profile and his or hers tumorprofile are needed prior to deciding on treatment.

It’s not only a matter of loosing quality of life for the patient when not working treatments are opted, bur it also means the loss of a lot of money spent on those useless treatments. Zorginstituut Nederland latest figures are over the year 2015 and show that with eleven ailments the cost of overtreatment with the seven highest priced oncolitics was nearly € 300.000.000,-

Research in Erasmus University Rotterdam has already shown that there are five various types of breast cancer each demanding a different treatment. Yet according to protocol the patients suffering from those five types of breast cancer are all treated along the lines of the very same protocol:”start with line 1 until that doesn’t lead to a favorable response, then switch to line two, and so on all the way up to line 6”. That while extended DNA profiling and tumor profiling have already shown that in some patients it would be better to skip line one and two since they don’t have any positive effect on those very patients and start for instance with line three instead. Saving them from harmful side-effects, saving time and preventing the cancer getting worse by administering the right treatment directly and by doing so saving a lot of money on in-effective treatments at the same time.

The same goes for prostate cancer where they already have discovered 7 different types, each demanding a different treatment to be effective. Yet healthcare sticks to existing protocols based on averages. Changing those protocols takes by average five years per protocol.

That is five more years of getting the wrong treatments. Five more years of unnecessary side-effects and five more years of unnecessary loss of quality of life and sometimes even yes, lives. And for society five more years of flushing at least € 300.000.000,- down the drain on ineffective treatments and complications caused by those.

So Inspire2Live agrees with 50PLUS, CDA and VVD: This has to end now!

Best treatments proven on a local level  (like the above mentioned findings at Erasmus University in Rotterdam on breast- and prostate cancer) should be made directly available to other patients who might benefit from them. They should not be subject to long delays, waiting for protocols to change. Such outcomes should be lead to immediate changes on a national and even global level!

Research has proven they can do it.

Physicians want the best treatments for their patients.

Patients want the best treatment based on the best diagnostics.

And society will benefit from saving at least € 300.000.000,- on a yearly basis.

And now there also seems to be a majority in Parliament in favor of the suggestions made in the initiative.

So let us all support 50PLUS, CDA and VVD with this initiative and let’s help them make a huge success of it. And let’s make it an example throughout the rest of Europe and maybe even the world.

The patient advocates and partners of Inspire2Live are ready and willing to make their resources and network available and to take their part in the taskforce to help realize its goals as soon as possible.

Click here for the Initiatiefnota over ugentie invoering uitgebreid persoonlijk profiel (in Dutch)