Health Boards
Tue-10-03-2015, 00:52 AM
(Mon-09-03-2015, 23:18 PM)jiml Wrote:(Mon-09-03-2015, 23:04 PM)Caroline Wrote:I think your system is good but I think it would be a nightmare over here(Mon-09-03-2015, 22:59 PM)jiml Wrote:(Mon-09-03-2015, 22:56 PM)Caroline Wrote:(Mon-09-03-2015, 22:13 PM)jiml Wrote: Yes Caroline a different perspective and a very good example of what can be achieved. But you are lucky there is no way I could do what you have done in the UK
I admire your resolve and the study you must have done before making the decision to start on Psorinovo.
May I ask is psorinovo an approved drug in Netherlands now? Or do you still have to fund it yourself
The trick is simple. Psorinovo is not registered.
But.... the substance DMF is registered as a medication, and because of this substance medication all medicines that contain it are covered by the insurance.
Still the patients organisation is working on the registration of Psorinovo, which is extremely difficult. Therefore there is a working group, called SWOP, that works on the start of scientific research. Have you seen my tweet on that?
Is it the one I re tweeted although the video was in dutch
Does your system allow you to do this and still support you
Yes... We are much more liberal than the UK and the US.
And it is logical. As in the medical guidelines dimethylfumarate is mentioned as a substance for being used with psoriasis, even recently with priority over others.
The system does not punish us, if we do different as the system prescribes.
I think that is more than logical. It is your own body. It is not the system that has to decide over that.
That wouldn't work here either. But mainly because even if you take the FDA out of the picture, the insurance companies would immediately take control and make the rules so we'd be in the same situation as now. For a country that prides itself on freedom, when it comes to medical care, we are at the mercy of insurance companies for the most part. I'm sure there is more that we can do on our own that I am not aware of. Not to paint the wrong picture as most doctors here will listen and you do have some say in treatments but they are also at the mercy of insurance companies and the FDA.