Open Source Pharma NL

We zijn in afwachting van de reactie van de Minister op de door de Kamerleden Sazias (50PLUS), van den Berg (CDA) en Veldman (VVD) ingediende initiatiefnota om voor elke kankerpatiënt met uitgezaaide tumoren, voorafgaand aan een behandelbeslissing, een uitgebreide DNA-test ter beschikking te stellen. Aan de hand van die test kan direct bepaald worden wat voor die specifieke patiënt wel gaat werken en wat niet. Voor mij spannend, omdat ik zelf heb bijgedragen aan de totstandkoming van deze nota. De tekst ervan vinden jullie hier: https://www.tweedekamer.nl/downloads/document?id=d0d1b035-0df6-456f-a7dd-118f20ad330b&title=Initiatiefnota%20.pdf

Maar wachten op een reactie wil niet zeggen dat ik ondertussen op mijn handen zit. want met de uitgebreide DNA-test zijn we er nog niet op de weg naar de allerbeste behandeling, gebaseerd op de allerbeste diagnostiek. Ten behoeve van Inspire2Live schreef ik een zogenaamde "weekly update" over het vervolgtraject wat nodig is en wat we in Inspire2Live verband aan het uitwerken zijn.

Omdat Inspire2Live een internationale organisatie van patientadvocates is, is de tekst in het Engels. Mocht dat te lastig zijn, dan is google translate je vriend ;-).

Liever het linkje naar de originele pagina? Dat is deze: https://inspire2live.org/open-source-pharma-nl/

Open Source Pharma NL

It’s good to see that there are so many initiatives concerning personalized medicine, and not just in relation to cancer patients. First there is the initiative of a majority in Dutch Parliament calling on the Minister of Health to make Whole Genome Sequencing (WGS) available for every cancer patient with metastasized solid cancer before a decision on treatment is made.

Secondly there is the advance being made in artificial intelligence. This will make it possible to match the patients WGS-data with a database with clinical genetic data of all existing drugs. This way it is possible to come to a match of (a combination of) drugs that might possibly have a positive effect for that specific tumor of that specific patient.

In the third place there is the progress being made on testing drugs in live tissue, like organoids. Organoids are mini-organs grown in cell culture from biopsies taken from patients and faithfully recapitulate the genetic and phenotypic characteristics of diseased tissues. Organoids have demonstrated to be valuable disease models for screening and validation of innovative medicines.

In the fourth place we already have the possibility of using off label medication regulated, making it possible to rediscover and repurpose drugs. And this is also already being done, although being it on a very small scale in the so called DRUP-project in The Netherlands. And finally there are a lot of advisory boards and taskforces working on this very subject, advising the Minister of Healthcare .

Inspire2Live is working on combining all these developments and forces into what we like to call Open Source Pharma NL. This initiative puts the diagnostic focus on WGS (if possible) and/or organoids followed by treatment based on the outcomes, either according to existing protocol or to off label usage; both being reimbursed by the insurance company . During treatment and the follow up live data is registered and stored and made available for future use.

The final step in the process is the registration of the new purpose of the existing drug as our intellectual property so pharmaceutical companies won’t be able to hi-jack our findings and raise the price and/or prolong the patent they might have and by doing so limit the access for patients that way. That way it will also become possible to establish a revolving fund which can invest in the growth of Open Source Pharma NL. From a national level to even a world wide level, securing access for every patient to the best treatment based on the best diagnostics.

COVID-19 has learnt Dutch politicians that things should change in the healthcare system. And even the pharmaceutical companies see a need for change and have shown a positive interest in our initiative. Healthcare insurance companies are also taking small steps in this direction and have stated that the combination of WGS & organoids offers enough certainty on the outcome to decide whether or not to reimburse treatment.

But COVID-19 also learned us about the “not-invented-here-syndrome” in the world where science meets healthcare and where at times finding “subjects” for trials, raising money and the usage of the right application form seem to be more important than saving the patient. Where treating patients conform protocol is still always leading and where not complying to such a protocol forms a risk for one’s career, even if not following protocol would benefit the patient.

Part of the needed change can be achieved by changes in rules and laws, but there is also a big part that demands change in the way science and healthcare are funded and also in the way radiologists, lab technicians, oncologists, surgeons and also general practitioners are trained.

As Inspire2Live we feel more than ever before that it is time to bring together the various initiatives and stakeholders, identify the problems we and the other stakeholders are facing in realizing the goals of Open Source Pharma NL, and come up with solutions for those problems. We are already halfway there with the majority in Dutch Parliament on our side.

Herman Otten
Patient Advocate, Public – & European Affairs