Sequoia
Senior member
- Joined
- Sep 19, 2010
- Messages
- 841
- Reason
- PALS
- Diagnosis
- 08/2010
- Country
- US
- State
- Washington
- City
- Seattle
hello every body! I am amazed that the new treatment Dex. has been around for over 14 years! From phase I to now phase III which won't finish until next December.
I am losing muscle in legs, arms, hands, effecting my swallowing, speech, and now breathing. We know how this goes, and it goes fast! If every Pals and Cals were to get on board like the HIV & cancer folks (Komen) did, we would have access to these new treatments now.
So many pals who really need these treatments can't qualify for the drug trial. I no longer can. If we all come out in force and are willing to write a letter to these drug companies, we could make a difference. Especially Biogen who has the big bucks to really do something for us.
Dex appears to be a break through drug. We all believe the ALS community should have the same Compassionate Use availability as was granted by the FDA for Cancer and HIV...
We realize we may need to offer Biogen a significant financial reimbursement and incentive, and ALS-Treat Us Now! will try to raise the funds.
Please help us all live a while longer, so we can see our kids grow up, and have quality of life as well as length of life. These drugs do slow the progression. One of our petitioners has a husband who had been in phase I of the Dex. drug trial and so got access to Dex. for many years. It really slowed the progression down.
I am losing muscle in legs, arms, hands, effecting my swallowing, speech, and now breathing. We know how this goes, and it goes fast! If every Pals and Cals were to get on board like the HIV & cancer folks (Komen) did, we would have access to these new treatments now.
So many pals who really need these treatments can't qualify for the drug trial. I no longer can. If we all come out in force and are willing to write a letter to these drug companies, we could make a difference. Especially Biogen who has the big bucks to really do something for us.
Dex appears to be a break through drug. We all believe the ALS community should have the same Compassionate Use availability as was granted by the FDA for Cancer and HIV...
We realize we may need to offer Biogen a significant financial reimbursement and incentive, and ALS-Treat Us Now! will try to raise the funds.
Please help us all live a while longer, so we can see our kids grow up, and have quality of life as well as length of life. These drugs do slow the progression. One of our petitioners has a husband who had been in phase I of the Dex. drug trial and so got access to Dex. for many years. It really slowed the progression down.