tag:blogger.com,1999:blog-3500936220214961312.post7407770927649286994..comments2023-10-02T04:06:53.185-04:00Comments on Brass and Ivory: Life with MS and RA: I Have a Voice and I'm Learning How to Use ItLisa Emrichhttp://www.blogger.com/profile/10862232056342347990noreply@blogger.comBlogger9125tag:blogger.com,1999:blog-3500936220214961312.post-45368810526580234282008-08-06T01:00:00.000-04:002008-08-06T01:00:00.000-04:00Thanks so much guys for all of the support. You'v...Thanks so much guys for all of the support. You've made me smile greatly. When the opportunity arrives, I think I will go talk to them especially if it will help make the drug available to ALL folks regardless of insurance status.<BR/><BR/>Diane, I asked about the legs only thing. Basically they are aware that MSer find other benefits but that was the only chosen endpoint. Easier to test and easier to prove efficacy. If they didn't test other stuff, then they can't claim that it helps that other stuff.<BR/><BR/>But of course, patients are free to say whatever they wish about the drug and it's benefits. A couple of highly vocal trial participants actively tout the benefits and sing the praises on Patients Like Me and some other message boards. Actually, I found that to be a bit too much. Too evangelical. But then again, I'm pretty evangelical on a few topics myself.<BR/><BR/>You know me, a true skeptic who doubts motives. For example, on Patients Like Me there is someone who is telling a tale of her doctor prescribing 4-AP (which is basically the same as this drug but gotten from a compounding pharmacy) for a recent relapse. She is journaling her daily experience in a thread of the forums. I find it extremely unlikely that this drug would be a substitute for going under steroids.<BR/><BR/>The theory of how this drug works is interesting and I can see how it could help. But the question of why it doesn't help more patients is puzzling to me. Today they announced the company's 2nd quarter earnings and held a conference call which I listened to. The questions which investor/fund managers ask are often quite interesting. Once even lead me to take a different look at their extension study numbers<BR/><BR/>They are presenting the detailed results from the study at the World Congress conference in Sept in Montreal. I truly wish I could be a fly on the wall when neurologists are able to question the data.Lisa Emrichhttps://www.blogger.com/profile/10862232056342347990noreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-39023627881840039812008-08-01T16:49:00.000-04:002008-08-01T16:49:00.000-04:00? Why only "filling in" holes for the legs? How d...? Why only "filling in" holes for the legs? How does it target just one area? And "Gold Standard?" That looks like "Old Standard" to me. Why must human tests be shrouded in secrecy? Why can we never hear from actual participants? Seems they would be thrilled to share good, long lasting results. It sounds like even people with very low score could be helped...so where are THOSE test results and participants? I would jump on their band wagon if their drug helped me. Just more ?s I'm thinking about...Diane J Standifordhttps://www.blogger.com/profile/11862850657925658079noreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-34752685106901325302008-08-01T16:41:00.000-04:002008-08-01T16:41:00.000-04:00You will find no bigger skeptic than I, but I agre...You will find no bigger skeptic than I, but I agree w/Linda (I too was govt employee, but wouldn't sleep with Hitler...unless I had a hidden knife...I digress)---there are still holes, but a drug co. reaching out, can't be all bad. Keep your friends close and your enemies closer; the inside info you might get would be priceless and if you help them to help us, bith will gain and perhaps set a good example for other drug researchers and companies. You are my hero. Go forth and keep your eyes wide open. You give me hope that WE CAN be heard. Thank you.Diane J Standifordhttps://www.blogger.com/profile/11862850657925658079noreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-12676896704038659352008-07-31T14:44:00.000-04:002008-07-31T14:44:00.000-04:00Lisa---Definitely go meet them in person. This wh...Lisa---<BR/><BR/>Definitely go meet them in person. This whole medication bull$%&! is frustrating for all of us. It's ridiculous that some people cannot <BR/>afford disease-modifying meds, or must pay high copays each month. <BR/><BR/>This symptom-suppressing drug sounds like a blessing for many (maybe take less or no Baclofen, Neurontin, etc?) But if it costs a fortune for people with little or no Rx coverage, then what? I'm now qualified for Medicare coverage, but I'm wary about getting Part D (Rx coverage) because of the yearly maximums. Might have to stay on my husband's Rx plan (pricey), because it at least covers Betaseron in full. <BR/><BR/>Go have your say. And you <I>will</I> be a homeowner someday (I'm from "the glass is half full" camp....) Good karma begets good karma.<BR/><BR/>JenJenhttps://www.blogger.com/profile/17421022098477662697noreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-81527876897025167462008-07-31T05:23:00.000-04:002008-07-31T05:23:00.000-04:00Most excellent! Take them up on thier offer. Your ...Most excellent! Take them up on thier offer. Your research has meant something to them from afar. It can only mean more up close.<BR/><BR/>Kudos to them as well for at least listening.<BR/><BR/>S.Anonymoushttps://www.blogger.com/profile/08793047835261862513noreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-75716459468558159072008-07-31T02:39:00.000-04:002008-07-31T02:39:00.000-04:00Congratulations Lisa,They finally stopped lurking....Congratulations Lisa,<BR/><BR/>They finally stopped lurking. It was wise of them to reach out to the founder of the MS Carnival that connects MS'ers who blog. Continue to keep your research honest!<BR/><BR/>I notice I have pharmaceutical lurkers when I talk my experience my negative reactions from prescription meds.Blinders Offhttps://www.blogger.com/profile/03109286529955936165noreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-35142567259861935662008-07-30T23:15:00.000-04:002008-07-30T23:15:00.000-04:00Can you hear me CLAPPING OUT LOUD 3,000 miles away...Can you hear me CLAPPING OUT LOUD 3,000 miles away?!? BRAVO, BRAVO, BRAVO!!!!!!!!!!!!!!!!!!<BR/><BR/>Here's my personal theory (for what it's worth) on sharing a bed with the pharmaceutical industry:<BR/><BR/>I work for the government. I rarely APPROVE of what my government does, nationally or locally, yet "they" sign my check. I can only hope/believe that my work WITHIN a government agency is making a difference to someone. I am the kind of person who would sleep with Hitler to save one Jewish person...dust myself off...and know in my heart I have made a difference.<BR/><BR/>I'm not encouraging you to SLEEP with anyone at Acorda, however! LOL But go ahead and make a difference if the opportunity is there to do so.<BR/><BR/>Linda D. in SeattleBRAINCHEESEhttps://www.blogger.com/profile/04478852688645497036noreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-54217841678973489162008-07-30T19:28:00.000-04:002008-07-30T19:28:00.000-04:00You are really making a difference. I like the wa...You are really making a difference. I like the way you hold up and provide unbiased info even under all the praise. Thanks for fighting the good fight.Denver Refashionistahttps://www.blogger.com/profile/17681030016057155728noreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-90431571899490000892008-07-30T13:52:00.000-04:002008-07-30T13:52:00.000-04:00I am going to re-read this when I am at home and h...I am going to re-read this when I am at home and have more time for thinking but initially, I think it is very cool and would totally take them up on an in-person discussion. <BR/><BR/>More later...Anonymousnoreply@blogger.com