News from The Netherlands

[rvallee]

I really can't believe they're saying out loud "we cannot possibly research these drugs because if they work they will be too expensive".

Maybe we need some research on how much government spending currently goes to care for ME/CFS patients (endless doctor visits, tests, disability payments, home care, no tax income etc.). Because I'm pretty sure those costs are way way higher.

Then why don't they drop all coverage for drugs that are still patented??

Also, it's not as if this is not a major area of economics. Externalities are a well-known problem, one of the biggest economic problems of our times, and it's precisely all about how hiding the bill doesn't remove the cost. Economists study these things a lot. Governments base a lot of decisions on this. This is entirely a choice. The choice of paying more for worse outcomes, seemingly on nothing more than being unable to admit having made a catastrophic series of mistakes while being perfectly willing to throw millions of people in the trash in the process.

Externality - Wikipedia

en.wikipedia.org

 

[N_Dina]

Also, it's not as if this is not a major area of economics. Externalities are a well-known problem, one of the biggest economic problems of our times, and it's precisely all about how hiding the bill doesn't remove the cost. Economists study these things a lot. Governments base a lot of decisions on this. This is entirely a choice. The choice of paying more for worse outcomes, seemingly on nothing more than being unable to admit having made a catastrophic series of mistakes while being perfectly willing to throw millions of people in the trash in the process.

Externality - Wikipedia

en.wikipedia.org

Policy makers are not that rational in real life though, act within the election cycle and are eager to put responsibility on their successors.

 

[V.R.T.]

I really can't believe they're saying out loud "we cannot possibly research these drugs because if they work they will be too expensive".

It's absolutely outrageous but perhaps useful as an example of just how illogical the neglect of MECFS is.

 

[OrganicChilli]

Is there any way to appeal the decision? I'm not familiar with advocacy groups in NL. Do we know which drugs they proposed to investigate and if they are trying to get private funding?

 

[V.R.T.]

Is there any way to appeal the decision? I'm not familiar with advocacy groups in NL. Do we know which drugs they proposed to investigate and if they are trying to get private funding?

The example Den Dunnen gave was daratumumab

 

[OrganicChilli]

The example Den Dunnen gave was daratumumab

My bad, I should have clarified that I meant other than daratumumab.

 

[Utsikt]

Someone should ask them if they include the same stipulation for cancer research..

 

[V.R.T.]

Someone should ask them if they include the same stipulation for cancer research..

The unsaid thing in all this - we are not as deserving as those with 'proper' diseases

Also I wonder if there was any ranty person esque lobbing here. It's such a bizarre decision by any logical measure but very typical of MECFS neglect.