Steven A Williams
Member
- Joined
- Jan 24, 2017
- Messages
- 29
- Reason
- DX MND
- Diagnosis
- 01/2017
- Country
- UK
- State
- London
- City
- London
Hi all,
Since the FDA in the USA have approved edaravone for use in their country last week, the UK should try its damnest to do the same, asap so as to extend as many lives as possible. I have written to my MP in the UK, below, and have so far had no response.
Can all UK forum members to do the same?
Thanks, Steve
To Stephen Hammond
Dear Stephen,
Hope you are well. Wondering if you could help me and save a few thousand people from early death.
I have motor neurone disease, a terminal illness, which several thousand people in the UK have at any one time. A portion of these thousands die early and are replaced by new sufferers. There is a drug called edaravone, also called radicut and in the USA radicava that slows progression of the disease by 33% in patients in the early stages of the disease. Less effective in later stages, but it nonetheless still slows progression.
It has been licensed in Japan, where it is made, for several years, and last week the FDA in the USA have approved it for marketing there. This FDA approval means that it is licensed in the USA, and patients will be able to receive its benefits soon.
I have been to Moscow to have this treatment, and I must say that it definitely works. My progression has slowed down, probably more than the modest 33% they claim.
Financially, it is not viable to take the medicine in Moscow at £5000 a session of two weeks, nor is it viable to take it in the UK as the drug costs £2200 for a month’s worth, and as it is administered over IV, the costs for a nurse to administer are £200 a day.
So I was wondering if there was anything you could do to help it gain approval, to get it licensed in this country, as soon as it can be. This drug will save thousand and thousands of lives over the years, slowing the progression of the disease, enabling people to live longer and more healthy lives with symptoms reduced.
Would you be able to help push the authorities to get this drug speedily approved?
Really hope you can help.
Thank you so much.
All the best
Steve
Since the FDA in the USA have approved edaravone for use in their country last week, the UK should try its damnest to do the same, asap so as to extend as many lives as possible. I have written to my MP in the UK, below, and have so far had no response.
Can all UK forum members to do the same?
Thanks, Steve
To Stephen Hammond
Dear Stephen,
Hope you are well. Wondering if you could help me and save a few thousand people from early death.
I have motor neurone disease, a terminal illness, which several thousand people in the UK have at any one time. A portion of these thousands die early and are replaced by new sufferers. There is a drug called edaravone, also called radicut and in the USA radicava that slows progression of the disease by 33% in patients in the early stages of the disease. Less effective in later stages, but it nonetheless still slows progression.
It has been licensed in Japan, where it is made, for several years, and last week the FDA in the USA have approved it for marketing there. This FDA approval means that it is licensed in the USA, and patients will be able to receive its benefits soon.
I have been to Moscow to have this treatment, and I must say that it definitely works. My progression has slowed down, probably more than the modest 33% they claim.
Financially, it is not viable to take the medicine in Moscow at £5000 a session of two weeks, nor is it viable to take it in the UK as the drug costs £2200 for a month’s worth, and as it is administered over IV, the costs for a nurse to administer are £200 a day.
So I was wondering if there was anything you could do to help it gain approval, to get it licensed in this country, as soon as it can be. This drug will save thousand and thousands of lives over the years, slowing the progression of the disease, enabling people to live longer and more healthy lives with symptoms reduced.
Would you be able to help push the authorities to get this drug speedily approved?
Really hope you can help.
Thank you so much.
All the best
Steve
