Help save a fellow PHer!
Discussion
Thank you all, very kind!! I will certainly keep you updated on how it goes.
Have you considered alternative funding means for the drug, such as setting up a charity if there isn't one already?
There is a small charity set up called PAWS-GIST which has set up a clinic to help improve treatment options for us, though drugs are so expensive we would never be able to raise enough money!
http://www.gistsupportuk.com/paediatric_paws.htm
We have been contacting local MPs as well though very standard responses so far..
Ps how do you add a quote in a box? Always wondered this!
Have you considered alternative funding means for the drug, such as setting up a charity if there isn't one already?
There is a small charity set up called PAWS-GIST which has set up a clinic to help improve treatment options for us, though drugs are so expensive we would never be able to raise enough money!
http://www.gistsupportuk.com/paediatric_paws.htm
We have been contacting local MPs as well though very standard responses so far..
Ps how do you add a quote in a box? Always wondered this!
jamieduff1981 said:
Signed.
Best wishes to you.
Have you considered alternative funding means for the drug, such as setting up a charity if there isn't one already?
Or lobbying Bayer? US insurers and healthcare providers have the ability to negotiate heavily with big pharma. $120,000 a year in the grand scheme of things is small fry compared to other drug treatments and given the small treatment population and relative benefits i think its scandalous that it is being canned. Best wishes to you.
Have you considered alternative funding means for the drug, such as setting up a charity if there isn't one already?
Signed and best of luck.
Sorry you're not well.
You might already know this, but if you're interested in the actual cost of the drug, the recommended dose is 160mg once daily for 21 consecutive days of repeated 28-day cycles. Obviously the number of cycles depends on your response and tolerance. Each cycle of 84 40mg tablets costs £3744 net.
All the best with your treatment.
You might already know this, but if you're interested in the actual cost of the drug, the recommended dose is 160mg once daily for 21 consecutive days of repeated 28-day cycles. Obviously the number of cycles depends on your response and tolerance. Each cycle of 84 40mg tablets costs £3744 net.
All the best with your treatment.
Or lobbying Bayer?
I think Bayer are putting in an objection though I am not too sure of the details,
Each cycle of 84 40mg tablets costs £3744 net.
I thought it was around this mark, though when you consider there are so few of us the cost is (in the grand scheme of things) insignificant. We have a double edged sword as well here, if the government cuts the drug, drugs companies will not want to fund R&D into new drugs..
Thank you all again!
I think Bayer are putting in an objection though I am not too sure of the details,
Each cycle of 84 40mg tablets costs £3744 net.
I thought it was around this mark, though when you consider there are so few of us the cost is (in the grand scheme of things) insignificant. We have a double edged sword as well here, if the government cuts the drug, drugs companies will not want to fund R&D into new drugs..
Thank you all again!
h. Lost a good friend to it very young, and nearly lost family to it. f
I thought I would share a piece the BBC south did on a fellow patient - Jemma, it is quite moving!
https://www.facebook.com/video.php?v=7884130545826...
https://www.facebook.com/video.php?v=7884130545826...
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