|
Elmiron Patent Expired Jan. 19, 2010
Category: News
Posted: 04/13/2010 10:22:15 PM
Views: 15057
Comments: 31 [ Read/ Post]
Synopsis: As we first shared last February, the patent for Elmiron (pentosan polysulfate sodium) expired January 19, 2010 raising a variety of concerns. Having a patent expire means that the drug is now available for manufacturing as a generic medication. For patients, this can be a very good thing because generics are usually much less inexpensive than the brand name medication.
|
As Elmiron users in the US can attest, it can cost hundreds of dollars a month if you lack drug prescription coverage. To have that monthly fee reduced to, say $25 per month, would be outstanding. Of course, the challenge is profitability. Elmiron is only FDA approved oral drug for the treatment of interstitial cystitis thus it doesn't have a large market share. Will another pharmaceutical company step in and try to capture the market? At this point, we're not aware of any companies who are considering making Elmiron in a generic form. But, we hope so.
We are certainly grateful to Ortho McNeil and its predecessors ALZA and IVAX, who have played a critical role in the education of physicians about interstitial cystitis diagnosis and treatments. We would not be where we are today in terms of public awareness without their tireless PR efforts and sponsorship of various IC events. That said, having the medication be more affordable means that more patients may be able to try it.
Earlier this Fall, the ICN wrote about a dozen letters to various Senators and Representatives urging that the patent for Elmiron be extended. I will be honest in saying that I was torn. I like the idea of a cheaper, more affordable version. In the long run, I think patients will benefit from a generic version But, I chose to support a patent extension simply because I was fearful that no other pharmaceutical companies would step forward. The last thing I want to see is Elmiron disappearing from the market. It appears, though, that those patent extension efforts have failed. We'll let you know if we hear otherwise.
I was thrilled to see the ICA announcement that Ortho McNeil will continue to manufacture Elmiron after the patent expires. This is great news!
So, whether you are for or against brand names vs. generics, time marches on and a New Year brings new developments and opportunities. Your thoughts??
Jill
|
Comments on Elmiron Patent Expired Jan. 19, 2010
| Result pages: |
1 |
2 |
 |
|
Susan
|
06/10/2010 09:01:14 PM
I would like to see Elmiron as a generic as I can't afford it even with a partial discount from my insurance company.
|
|
Janice
|
06/17/2010 12:26:05 AM
I too would like to see Elmiron as a generic. I can't buy it because I don't have insurance to cover the cost. Doctors don't even give samples to let you test it to know if it makes you feel ill. I was on the double-blind clinical trial for Elmiron done by Dr. Parsons at UCSD. I seem to remember that it made me sick to my stomach. I'd love to try it again as I'm having a major flare.
ICN Response: Well, if we could find a generic manufacturer to take an interest in it, we'd be set.. but right now no other companies appear interested. For flare management, however, most doctors prefer to use a rescue instillation because it helps to numb the bladder and, for some patients, can stop a flare in its tracks.
|
|
Jeannette F.
|
06/21/2010 12:58:18 AM
The first time it cost us $660.00 as I had to me some of my deductable for 3 months, 4 pills a day. The next time it cost $516.00 for 3 months. I do not know what it will cost next time, but we can't afford to do this again.
ICN Response: Sadly you're not the only one whose facing this. One option to consider would be the supplement CYSTOPROTEK which is only $39 a month and has a similar method of action (i.e. bladder coating properties). Many Elmiron refugees have transitioned to this simply because of the cost involved and, luckily, it's got the research to back it up.
|
|
Pamela H.
|
06/22/2010 03:00:23 PM
Question: Does Cystoprotek, like Elmiron, have the side effect of causing hair loss? And, do you know what percentage of Elmiron users do in fact suffer hair loss?
ICN Response: CYSTOPROTEK does not appear to have any similar side effects to Elmiron. I've had no reports of hair loss from patients taking it though we've had a few reports of stomach upset. The hair loss percentage with Elmiron is roughly about 3%. Very rare indeed.
|
|
Betty P.
|
06/26/2010 02:03:22 AM
I too would like to see the generic version come to fruition. Unfortunately, if it doesn't many who cannot afford them remain with the pain and frustration that bladder flares bring about. I found it to be a blessing but the downfall is that it takes at least 3-4 mo. before ones body begins to feel the difference. Foods are also a great part of IC treatment. I have been flare free for almost a year in taking heed to avoiding foods and waiting for the Elmiron to be available in generic form to continue taking it for at least 6 months. Also, Elmiron is available in Canada if anyone is interested they of course will need to contact your doctor directly before dispensing it. (At a better price too).
|
|
donald a.
|
06/27/2010 08:42:30 PM
I read they discontinued the sale of Elmiron in the U.K. I wonder why.
ICN Response: We don't know exactly why but imagine it has something to do with the patent expiration. Please call the COB FOUNDATION for more information. In the meantime, please note that many patients who have used Elmiron in the past have successfully transitioned to the over the counter supplement, CYSTOPROTEK, which has a similar method of action. This is particularly true of patients who could not tolerate Elmiron due to side effects or patients that could not afford it.
|
|
Kimberley C
|
07/20/2010 12:07:13 AM
I live in Canada - and I pay $168 for 90 pills -I take 3 a day and this drug has helped me with my IC. Without my drug care plan I also would find this amount stressing. I pay 50% and require refills every month. I think a generic version would be welcomed by most if it worked just as well and was safe. I am glad that the drug will continue to be made.
|
|
Joann B
|
07/28/2010 08:33:55 PM
I was diagnosed in May 2010. This is my first comment. I am on Elmiron as well as Bladder Installations. I cannot take the full dose as I had some side effects so I now take one in the morning and one at night. I would like to know if anyone else has had these side effects. I would get dizzy spells. I also would like some info on just what to eat and drink as far as any alcohol beverage when at a special function. I do take prelief when going out for a special occasion and it does seem to help me.
ICN RESPONSE: Thank you for your comments! We suggest that you visit our main support website THE IC NETWORK where you can find practical information to improve your bladder discomfort. Use the following links to:
* READ EDUCATIONAL LITERATURE;
* ASK QUESTIONS IN OUR SUPPORT FORUM;
* ATTEND LIVE SUPPORT GROUP MEETINGS;
* LISTEN TO GUEST LECTURES;
* Or WATCH OUR EDUCATIONAL VIDEOS!
* You may also call our support line at 707-538-9442; and/or
* PURCHASE PERSONAL COACHING by Jill Osborne, Julie Beyer, Diana Brady or Heather Howard!
|
|
Leah L.
|
08/10/2010 02:17:46 PM
I would also love to have a generic version of Elmiron available. I have insurance coverage but it is a high deductible plan of $1500. That means I have to pay out of pocket for the drug ($280/month!!!) until I meet the $1500 deductible and then pay 40% of the cost. I am grateful that this drug exists however it is entirely to expensive, even if you have coverage. I've tried to find supplemental Rx coverage that would provide me with a co-pay for the drug but I've had no luck because I currently have medical with Rx coverage. I do hope a generic is available soon. In the meantime, I've decided to order CystoProtek. I hope it will relieve my pain!
|
|
Lori L.
|
08/14/2010 03:45:54 PM
I just paid $200 today for my Elmiron. My husband was layed off a year and a half ago, so we will be losing our Insurance and prescription coverage. I am going through a BAD time the last 6 weeks with pain. I would love to have a generic version. I stress over losing rx coverage and I believe the stress makes my IC worse!!! I was diagnosed with IC 11 years ago. I am a hairdresser and every year I work less and less the Standing up all day is killing me. I need GENERIC. :)
|
|
Diana R
|
08/27/2010 08:21:19 AM
So grateful for IC network! Diagnosed in 1984. That doctor was a huge blessing! Ten+ years previous I was told that I may think about psych counseling tho I had blood in urine thou no bacteria!
DSMO treatments (6) in 1984 and I was symptom free for 10-11 years - a couple of mild flares that pyridium & diet change got me through. 1998 tried DSMO treatment - felt worse. Heprin + 'cocktail' treatments helped a bit.
2007 began Elmiron 1 @ day,
2008: Elmiron 2 @ day and added Elavil 1 @ day, in 6 mo - Elmiron 3 @day
9/2009: Elmiron 4 @ day & 1 Elavil
now hit insurance doughnut and no coverage of rest of year.
$446 for 1 month /4 Elmiron @ day.
trying to cut back, rotating 3/day, 2/day= in 1 week symptoms.
Dr always advised to keep up with IC Network - said best & up to date info.
It was great to be symptom free without bladder infections, able to be sexually active w/husband.
I read info on this site today I had not heard of= cystoprotek and Elmiron available in Canada for less!
can anyone tell me how US citizen can purchase Elmiron from Canada?
Thank you all with IC Network!
|
|
Jennifer
|
09/17/2010 11:11:04 PM
Elmiron has been a life saver for me. I started taking it upon diagnosis, four years ago. Prior to learning of my IC diagnosis I wandered aimlessly from doctor to doctor for approx. six years trying to learn why I was sick all the time. Now with the Elmiron and following IC diet guidelines, I am able to live a fairly normal life. I sincerely hope this company continues to manufacture Elmiron.
|
|
Dwayne G.
|
10/22/2010 03:12:26 PM
I have only been able to get elmiron because I am on some kind of grant program through the pharmaceutical company. In fact, I need to renew within the very next month or so.
|
|
Bob's wife
|
10/24/2010 03:15:33 PM
Elmiron is available through the manufacturer for free for those who have no insurance and/or financially qualify. Go to their website and look under patient assistance programs. Hub got his for free for 6 months, and although it did not help him and he discontinued, he was grateful at the time for the effort as we never could have afforded it.
|
|
Cindy B.
|
10/25/2010 12:43:53 PM
I was diagnosed with IC in 2006 but have been lucky enough to control it by watching what I eat/drink. I've been having a bad flare up that required me to go to the doctor. I was prescribed Elmiron again, along with an antibiotic but unfortunately, I'm not going to be able to get the Elmiron. The cost is $335.78 and I'm on unemployment. I don't understand why this medicine is still so expensive. Thanks for the information about cystoprotek, looks like I'll be giving that a try.
|
|
Tabatha
|
11/08/2010 09:45:39 PM
I agree there should be a generic or a similar drug that is generic. Unfortunately I did pay the high cost of Elmiron only to have a bad allergic reaction. I have never had an allergic reaction to any other medication. I have thought about trying the Cystoprotek but have some stomach problems so really do not have the money to waste if it does not work. I have tried prelief but it upsets my stomach.
|
|
Mary G
|
11/30/2010 01:45:06 PM
I was prescribed Elmiron three years ago and did not notice any improvement in my symptoms, and due to it not having a generic it was a $50.00 co pay with my insurance, every month. Plus bladder instillations, that were a 40$ co pay just for the office visit, I also have to bring my own Heparin, at 15.00 for two vials. I am a single mom and this has completly drained my bank account. Its actually cheaper for me to get a script for percocet and works on the pain instantly, but is only masking the symptoms and not treating the disease. But unfortunately its cheaper to take pain killers.
|
|
Christina
|
12/22/2010 11:06:17 PM
For those of you who can't afford Elmiron, have you tried contacting the pharma company who manufactures the drug? There are pharma companies who have programs for those who can't afford their drugs. They either reduce the fees or give them free of charge, depending on salary and insurance coverage.
|
|
Gail
|
02/07/2011 11:20:56 PM
I fall in the donut hole by March because of my expensive meds. My doctor gave me a hardship form from Johnson & Johnson who makes elmiron. I was approved. They sent me a card to give to my pharmacist and paid for my elmiron for the rest of the year. I have just started a new year, but I will definitely be filling out the forms for help to low income households.
|
|
Deb
|
02/14/2011 09:37:53 PM
I urge all to give Cystoprotek a try..................I was very happy with the results. And reading the detailed research, it may even work better than Elmiron! I too can barely afford the Elmiron. What are people supposed to do? Something needs to change in this country re: pharmaceuticals!
|
| Result pages: |
1 |
2 |
 |
Share comments
|
|