It has been just over a year since we took the initiative to help the Dutch Member of Parliament, Léonie Sazias (50PLUS) in writing an initiative on access to Whole Genome Sequencing (WGS). Later on her efforts were joinend by two other Members of Parliament, Joba van den Berg (CDA) and Hayke Veldman(VVD).
The biggest problem with the access to it being the WGS-test not being reimbursed. This causes hospitals to opt for their own less expensive and more traditional tests with a more limited scope.
Even with a broad panel genomic test it is like looking through a keyhole into a room: you can only see part of the room. Where as WGS gives you a view of the entire room.
And the more you are able to see, the better chance there is of getting the patient the best possible treatment or access to trials of promising treatments.
The current situation however means that treatment based on the best possible diagnostic isn’t for everyone. It was just available for the happy few that could take part in WGS-based trials on drug rediscovery (DRUP) and those diagnosed in a hospital cooperating with the Hartwig Medical Foundation.
So once again we had to keep pushing for equal access for all to the best possible care, based on the best possible diagnostics.
For us getting WGS as a standard (and reimbursed) diagnostic instrument for every patient with a metastatic cancer is even more important since it also forms the basis of our Open Source Pharma Inspire2Live initiative.
Without it, there will be no Open Source Pharma Inspire2Live!
So we are very happy to announce that today a motion to make WGS available as a standard diagnostic tool for patients with metastatic cancers, starting with those with an unknown primary tumor and those in a fairly good condition without any standard treatment options, was carried by a majority in Parliament.
The Dutch Minister of Health has already stated that she will carry out the motion as soon as possible.
This means a very big success for Inspire2Live and a basis to build further on our Open Source Pharma initiative.
We like to thank the three Members of Parliament who took the initiative and the Hartwig Medical Foundation for all their support of our efforts.
Together we really made a difference in broadening access to the best possible care based on the best possible diagnostics. And by doing so in improving the chance of survival with a good quality of life for a lot of people!
For more information and questions please contact:
Herman Otten
herman.otten@inspire2live.org
+31 634993562