tag:blogger.com,1999:blog-3500936220214961312.post1715661088998185838..comments2023-10-02T04:06:53.185-04:00Comments on Brass and Ivory: Life with MS and RA: Questcor uses the Orphan Drug Act as a strategy tool to boost marketing and developmentLisa Emrichhttp://www.blogger.com/profile/10862232056342347990noreply@blogger.comBlogger1125tag:blogger.com,1999:blog-3500936220214961312.post-77959519204236941942007-09-24T08:33:00.000-04:002007-09-24T08:33:00.000-04:00Lisa- first off, thank you for posting on my blog....Lisa- first off, thank you for posting on my blog. What thorough investigative work you have here. I am going to share your blog post with another parent who has been working hard to get this into the media. Actually, I may share it with my whole IS support group.<BR/><BR/>I can truly see this evolving the way you have described. It's despicable. When new members join our support group, we do our best to inform them of the ACTH issue and provides them alternatives....Vigabatrin, Synacthen (synthetic ACTH available in Canada) and other anti-epileptics. The problem is, most parents don't get to our support group right away. IS is so detrimental that neurologists tend to admit these kids to the hospital and start treatment right away. I agree with that, but then the parents get steamrolled into a treatment plan with little time to comtemplate the financial ramifications. They have us parents by the 'short hairs'. They convince us it's life and death (which it can be) and that we MUST use ACTH. I thank my lucky stars that we bypassed ACTH and went with Vigabatrin. Although I fear that Ovation Pharma will get Orphan Drug status for that too and then we'll be in trouble!<BR/><BR/>Going to go peruse the rest of your blog!JSmith5780https://www.blogger.com/profile/16954759123115546248noreply@blogger.com