Hello ALS community,
I joined this forum last summer? but have been reading posts from those affected for 2+ years. Although I do not have ALS, I am affected. A good friend of mine from high school was diagnosed 9 years ago. His condition is worsening. He's been having problems swallowing and the docs are calling for a feeding tube. It's a miserable disease to watch and unimaginable to have. I've read here and google searched about acthar and know about the trials that some are participating in. My question is: Is anyone having a benefit from the drug? From what I've read my friend might be too far along in his progression. I know that the cost is crazy. I know that for hardship cases, and if he qualifies, the company sometimes donates the drug. Does anyone have any insight to this? Is he too far along to qualify? Do they actually donate treatment and is it helping? I feel frustrated to see this lucid man physically degenerate. Any help is greatly appreciated. Thanks in advance.
I joined this forum last summer? but have been reading posts from those affected for 2+ years. Although I do not have ALS, I am affected. A good friend of mine from high school was diagnosed 9 years ago. His condition is worsening. He's been having problems swallowing and the docs are calling for a feeding tube. It's a miserable disease to watch and unimaginable to have. I've read here and google searched about acthar and know about the trials that some are participating in. My question is: Is anyone having a benefit from the drug? From what I've read my friend might be too far along in his progression. I know that the cost is crazy. I know that for hardship cases, and if he qualifies, the company sometimes donates the drug. Does anyone have any insight to this? Is he too far along to qualify? Do they actually donate treatment and is it helping? I feel frustrated to see this lucid man physically degenerate. Any help is greatly appreciated. Thanks in advance.