jennyinfrance
Active member
- Joined
- Feb 12, 2015
- Messages
- 45
- Reason
- PALS
- Diagnosis
- 06/2013
- Country
- FR
- State
- Dordogne
- City
- Savignac Ledrier
RCH4 revisited again
I have been on the ALS drug RCH4 for the past 19 months and I am upset about the moderators comments which are most unfair to a charity who has provided both support and RCH4 free of charge worldwide for years.
The moderator here, Laurie, has locked two previous threads about this ALS drug, denying PALS the right of reply. It is the duty of a moderator to moderate and if wishing to air personal views must stand down as moderator and post comments as a normal contributor.
Laurie said:
No reputable agent,
The supplier is not an agent, they are a charity
needs to compare itself against another as shown in that page.
The page Laurie refers to is an unbiased comparison between the only drugs which work in ALS, and is a one-stop source of factual information on cost, efficacy, availability etc..
Riluzole, Edaravone & RCH4
She went on to say:
The Web site is rife with contradictions (90 vs. 25 pt years of dosing, etc. -- both tiny in terms of proven safety)
What the lady failed to mention was the information on the chart appearing on the web site are the words
"2016" and "90 patient-years treatment" "In ALS and another indication". No contradiction.
Their treatment is ongoing (not a clinical trial) so numbers change.
Actually their web site shows for 2017 35 years patient-years treatment which is exactly the same treatment experience on which the FDA granted Edaravone a marketing licence.
Laurie should refer herself to independent comments such as on the PLM forum:
https://www.patientslikeme.com/treatments/show/28469#overview
Also I see that RCH4 currently is the most popular vote on ALS Untangled
ALSUntangled.com - Open Reviews
Laurie, please do not lock this thread as you have repeatedly done before and confine your activities to moderating instead if criticising that which you know nothing about.
I have been on the ALS drug RCH4 for the past 19 months and I am upset about the moderators comments which are most unfair to a charity who has provided both support and RCH4 free of charge worldwide for years.
The moderator here, Laurie, has locked two previous threads about this ALS drug, denying PALS the right of reply. It is the duty of a moderator to moderate and if wishing to air personal views must stand down as moderator and post comments as a normal contributor.
Laurie said:
No reputable agent,
The supplier is not an agent, they are a charity
needs to compare itself against another as shown in that page.
The page Laurie refers to is an unbiased comparison between the only drugs which work in ALS, and is a one-stop source of factual information on cost, efficacy, availability etc..
Riluzole, Edaravone & RCH4
She went on to say:
The Web site is rife with contradictions (90 vs. 25 pt years of dosing, etc. -- both tiny in terms of proven safety)
What the lady failed to mention was the information on the chart appearing on the web site are the words
"2016" and "90 patient-years treatment" "In ALS and another indication". No contradiction.
Their treatment is ongoing (not a clinical trial) so numbers change.
Actually their web site shows for 2017 35 years patient-years treatment which is exactly the same treatment experience on which the FDA granted Edaravone a marketing licence.
Laurie should refer herself to independent comments such as on the PLM forum:
https://www.patientslikeme.com/treatments/show/28469#overview
Also I see that RCH4 currently is the most popular vote on ALS Untangled
ALSUntangled.com - Open Reviews
Laurie, please do not lock this thread as you have repeatedly done before and confine your activities to moderating instead if criticising that which you know nothing about.