Inspire2Live Update: ‘What do we lobby for?’

Inspire2Live Update: ‘What do we lobby for?’

Posted on Monday, August 12th, 2019 at 10:09 AM by

Ban on tobacco sales

Inspire2Live, has in talks with various members of the permanent committee on health of the Dutch parliament given its view on tobacco sales and the infringement it forms on the public right to health. We have made an appeal not to forbid the smoking itself, but to forbid the sales of tobacco products and of those equally addictive and damaging alternatives now being developed by the tobacco industry. On the eve of the debate in Parliament on the “prevention agreement” (due shortly after the summer recess) we will make an appeal on government and Parliament in the media. At the same time, other organizations are linking tobacco to human rights (one of which is of course the right to health that forms the basis for our demands). Action on Smoking & Health (ASH) is one of those organizations and has a nice overview on tobacco in relation to human rights. You can read it here: https://ash.org/human-rights/

Cancer Centers of Excellence

In 2018 a delegation of Inspire2Live presented a petition to the members of the permanent committee on health of the Dutch Parliament: http://inspire2live.org/news/inspire2live-cancer-treatments-can-really-everything-hospitals-costs-human-lives/. Parliament asked the Minister of Health to react to it and he did so by letter. He stated that although he didn’t recognize all the problems in the current practice as mentioned by us in the petition, he had no objections to our solutions but felt it was not his responsibility to act upon it, but that of the specialists/oncologists and researchers. Parliament didn’t feel that that was good enough and placed it on the agenda to be discussed further. Unfortunately at the time it was supposed to be discussed, a few hospitals went bankrupt and discussions on those bankruptcies and their aftermath left no room for any other topics to be discussed. Inspire2Live will continue to address these problems and push our solutions in our discussions with the Ministry of Health and Dutch and European Parliament.

New mandate period of the newly elected European Parliament

Elections for Parliament doesn’t just mean a lot of new faces, but also a re-shuffle of the workload between members of those Parliament http://www.europarl.europa.eu/meps/en/home. From the office of MEP Annie Schreijer-Pierik we received a nice thank you note for the appreciated cooperation in the last mandate period. The re-shuffle however meant that health and the committee ENVI is no longer within Annie’s scope. However, she kindly introduced us to the MEP of her party that will take her place in ENVI, MEP Esther de Lange. A meeting between her and a few PA’s will follow.

Consultancy European Committee on outlines future HORIZON funding

Inspire2Live is taking part in consultancy rounds of the European Committee on the future of HORIZON.

Our view on Horizon and IMI2 partnerships in short:

  • Active PA involvement has to be part from any initial proposal onwards for an application to even be considered for funding: if about us, not without us!
  • Change it into an Open Source Pharma Fund to finance projects that consist of:
    • AI on basis of FAIR ( i.e.in which WGS-data is compared to pharmacogenetics and pharmacogenomics);
    • Wetlabs (do the AI-outcomes for best treatment work? Registration real life data);
    • Licensing (IP, FAIR access; fair pricing).

Whole Genome Sequencing

MP Léonie Sazias (50Plus) wants the best treatment based on Whole Genome Sequencing to become available for everyone. She wants to take an initiative in Parliament to achieve that goal. However, since WGS is not useful or even impossible in some cases, WGS for all is more complicated to achieve then it might sound and so she requested our help and we have formed a working group consisting of PA’s and people from Hartwig Medical Foundation to define best practices, the obstacles in getting it available for as many as possible and in what way politics can play a role to achieve that goal. By helping her write her initiative we hope to achieve reimbursement of WGS for everyone who might benefit from WGS as a basis for personalized medicine

Chair SER and Minister of Social Affairs at the National Cancer & Work Conference

Both the Chair of the Social Economic Council (SER), Mariëtte Hamer and Minister of Social Affairs Wouter Koolmees have been approached by Inspire2Live and asked to play an active role in the upcoming National Conference on Cancer and Work November 5th 2019 as organised by a few of our PA’s https://nationalekankerenwerkdag.weebly.com/programma.html. They gladly accepted, Mrs. Hamer will kick off the workshops and Minister Koolmees will reflect on everything discussed by the end of the day. It promises to be a very interesting day for both organizations of social partners as well as for individual employers and employees.

 

Herman Otten, Patient Advocate Inspire2Live

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