tag:blogger.com,1999:blog-4889592646404303255.post6402446955772406004..comments2023-10-08T07:50:35.783-04:00Comments on Fingolimod and Me: Taking a deep breath...Unknownnoreply@blogger.comBlogger7125tag:blogger.com,1999:blog-4889592646404303255.post-51799897293969063812010-10-10T16:58:54.001-04:002010-10-10T16:58:54.001-04:00well, we'll see if it's true, but a differ...well, we'll see if it's true, but a different rep at my insurance company (and my work HR person) say i AM covered for gilenya (with only a $20 copay). Part of me is ecstatic, but part of me is terrified of the possible side effects if I do switch. <br /><br />I'll have to undergo an EKG, dermatologic exam, eye exam,and blood tests before i switch, so I can be monitored for the possible side effects reported. <br /><br />Again, whether or not i switch, i'm so impressed by and grateful to those who participated in the clinical trials.Franciehttps://www.blogger.com/profile/12482455272658148979noreply@blogger.comtag:blogger.com,1999:blog-4889592646404303255.post-7188195364953980262010-10-07T11:04:47.918-04:002010-10-07T11:04:47.918-04:00There's alot of new info in the below article ...There's alot of new info in the below article regarding insurance/cost/etc.:<br /><br />http://www.bloomberg.com/news/2010-10-04/novartis-ms-program-guides-patients-to-new-pill-covers-out-of-pocket-cost.html<br /><br />I pulled out a few important parts but suggest everyone read the entire article.<br /><br /><b>Novartis MS Program Guides Patients to New Pill, Covers Out-of-Pocket Cost</b><br /><br />By Michelle Fay Cortez - Oct 4, 2010 7:57 AM CT<br /><br /><i>Novartis AG will pay out-of-pocket costs for non-Medicare patients who use the company’s multiple sclerosis pill Gilenya when the drug, to be priced at $4,000 a month, goes on sale in the U.S. this week.<br /><br />The Swiss drugmaker will pay as much as $800 monthly in co- payments for Gilenya, the first oral medicine for the condition, the company said in an e-mail. Novartis will also help patients navigate testing and monitoring recommended by U.S. regulators who approved Gilyena on Sept. 22, paying as much as $600 per patient for that expense.<br /><br />The Novartis program assigns “nurse navigators” to patients enrolled independently or through their doctors, Jody said. The nurses provide logistical support, educational materials, and a hotline. <b>The program also will offer money for co-payments and related tests and, for those without insurance who earn less than 500 percent of federal poverty levels, full coverage of treatment costs.</b><br /><br />The Novartis program will cover costs for patients with commercial health insurance, she said. Patients enrolled in government insurance programs, such as Part D for Medicare, the U.S. health plan for the elderly and disabled, aren’t eligible to participate because of legal restrictions. That’s also true of patients who live in Massachusetts, with some restrictions for patients in Michigan, Rhode Island and Minnesota.<br /><br />Eric Althoff, a spokesman for Basel-based Novartis, said in a Sept. 30 e-mail that the pill will be priced wholesale at about $48,000 annually. Injectable treatments such as Avonex, Merck KGaA’s Rebif and Teva Pharmaceutical Industries Ltd.’s Copaxone cost between $2,800 and $3,200, for a standard month’s supply, according to the Web site destinationrx.com.</i>TomZoohttps://www.blogger.com/profile/01562357733701281128noreply@blogger.comtag:blogger.com,1999:blog-4889592646404303255.post-28036135710355732812010-10-05T18:20:39.309-04:002010-10-05T18:20:39.309-04:00I was SO sure that i would be one of the lucky one...I was SO sure that i would be one of the lucky ones whose insurance would pay for gilenya. It does cover avonex; i only pay $20/month for that. But today i found out that it's not covered at ALL by my insurance company, at least in the plan i have thru my employer. I read today that novartis is saying they'll give non-medicare patients $800 per month to help out, but that still leaves $3200. i really can't believe it. I had finally decided that i'm up for the risks and was going to switch.Franciehttps://www.blogger.com/profile/12482455272658148979noreply@blogger.comtag:blogger.com,1999:blog-4889592646404303255.post-10242627266441144152010-10-04T11:09:07.187-04:002010-10-04T11:09:07.187-04:00Holy. God. Clinical trial nurse just responded to ...Holy. God. Clinical trial nurse just responded to my email with:<br />"It IS $48,000 a year. For you being a study patient, you will have financial assistance. Don't worry."the queenhttps://www.blogger.com/profile/10263293738568555668noreply@blogger.comtag:blogger.com,1999:blog-4889592646404303255.post-81000958592366622892010-10-02T19:25:44.511-04:002010-10-02T19:25:44.511-04:00Sigh. Another voice of reason speaking up. I know,...Sigh. Another voice of reason speaking up. I know, I know...<br /><br />If I won the lottery I think I, too, would gladly fork over the dough for the meds. It just seems like such a scary thing to think of facing the whole application process, possibility of denial, and fear of what will happen if I get off the meds. I went through it with Copaxone and it was very stressful.<br /><br />The fact that we have moved in with family and are renting out the house to avoid foreclosure has left me totally stressed out and uptight about what will happen when I'm not handed my 3 pill bottles at no cost.<br /><br />Besides, a law like that would never get passed anyhow. Big pharma has too much of a stake in it and all the money to fight it.Jeri Burtchell (TickledPink)https://www.blogger.com/profile/05961503858715547705noreply@blogger.comtag:blogger.com,1999:blog-4889592646404303255.post-60940331255628467322010-10-02T14:44:11.411-04:002010-10-02T14:44:11.411-04:00Jeri, while I think your idea is wonderful in theo...Jeri, while I think your idea is wonderful in theory, I don't believe is has a place in reality. Free meds for life - especially if lab rats know upon entry they will be rewarded in this way - I think opens an big, ugly can of worms, and some unpleasantness for the lab rats.<br /><br />There is no doubt in my mind the IRS would tax us on the value of the meds as earned income.<br /><br />What if the FDA decided lab rats would have to pass criminal and background checks prior to acceptance into a study? Who'd pay for that - the drug company? They'd love that, I'm sure. That'd cost them a whole lotta money on top of an already very expensive process. And who'd keep those records? I personally don't want the FDA that far up my butt. The IRS is bad enough.<br /><br />What if, in an effort to slow down the approval process, a competing company were to formally question the results by claiming some malfeasance (I love that word) in of a particular center's data reporting? All the lab rats attached to that location would have to be part of any investigation. That could take years and, again, to many people trying to get up my butt.<br /><br />This is what I propose: lab rats who need to can apply for prescription assistance. But they (we) should be assured of the best assistance plan the drug company has available. I'd even be fine with reapplying every 3-5 years. But really, if I won a big lottery or something, I'd gladly start paying my fair share.<br /><br />P.S. The Dermatologist and the Pulmonary lab usually try to collect from me. Apparently my study center is an <i>exceptionally</i> slow pay.Anne Phttps://www.blogger.com/profile/07630895464447581306noreply@blogger.comtag:blogger.com,1999:blog-4889592646404303255.post-350523469807243072010-10-02T08:27:11.513-04:002010-10-02T08:27:11.513-04:00Oh, weird! The Opthamolgy dept at my center was th...Oh, weird! The Opthamolgy dept at my center was the one demanding the payment.the queenhttps://www.blogger.com/profile/10263293738568555668noreply@blogger.com