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Elmiron Patent Expires This Month - 1/19/10

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  • Elmiron Patent Expires This Month - 1/19/10

    As we first shared last February, the patent for Elmiron (pentosan polysulfate sodium) does indeed expire 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 todays 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??

    Last edited by icnmgrjill; 01-07-2010, 09:45 AM.
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  • #2
    I am very lucky to have very good insurance and Elmiron only costs me $9 a month. Too many women have poor or no insurance. For their sake I hope there will be a generic available at a decent price. If there is a generic available,that is what my insurance will pay for and I won't get brand name any more. It will most probably work the same.


    • #3
      If there is no generic competition for this drug I see no reason why Ortho McNeil won't continue to provide Elmiron at their current pricing, -an arm & a leg, with regular increases as has been their practice. Perhaps a competitor will jump into the game and we will hopefully see the price drop lower.

      Either way, I doubt pentosan polysulfate sodium will disappear altogether. I expect rather it will find the highest sustainable price the market will bear which still provides enough profit to be worthwhile to any manufacturers.

      Sorry, I have a bad attitude towards pharmaceuticals and their profit margins!
      Does it show?

      "The happiest people don't necessarily have the best of everything; they just make the best of everything they have."


      • #4

        I know I've heard that Elmiron doesn't actually make all that much of a huge profit, but won't studies like the RICE slowly start to change all that? Or is it a lot more complicated than that? I would think that pharmaceutical companies would be taking notice and starting to develop more of an interest in creating new treatments for IC because the patient base might be much bigger than originally thought...which obviously means greater profit potential. I'm looking forward this year to hearing more about any further developments on new treatment possibilities like Uracyst and the Taris lidocaine device. I have a lot of hope for the future of IC within the next 10-15 years. I just feel deep down in my gut that some good beneficial progress will be made. Anyone else feel hopeful?
        Back to the Elmiron, I'm glad that that Ortho McNeil decided to continue on with Elmiron. I can't imagine how terrible that would be to take away one of the few FDA approved drugs for IC...

        "Where there is hope there can be faith. Where there is faith, miracles can occur."


        • #5
          Alright, I almost lost my lunch at the prospect of not having my Elmiron. Never dawned on me a company would not continue to make a drug after a patent expires. To be honest, if there is any profit margin, that just doesn't make sense.

          Here is my question. If a generic becomes available, would it be made so there are no additives/fillers that would bother our bladders? I for one, have some of my worst flares from medication fillers.

          Also, if no generics pop up, could compounding pharmacies make Elmiron capsules?
          Currently dealing with IC (diagnosed May 2001), Fibromyalgia (January 2000) and ADHD (1998 sometime) and vulvodynia (Jan. 08)

          I work in the schools helping students with disabilities. I am a speech language pathologist working as an Assistive Technology Specialist. A very do-able job with IC.


          Meds that I take:
          Elmiron 2 x day ; Effexor XR 37.5 ; Ritalin;
          Nasonex; Atarax 10 mg (night); Lidocaine 5%; monthly B-12 shots; Pyridium as needed

          Meds I am trying

          Supplements that help:

          Condroitin Sulfate; Calcium Citrate; Magnesium Glycinate; Olive Leaf Extract; daily probiotic

          Other treatments that help:
          Physical Therapy for PFD; Massage for Fibro; Chiropractic for Fibro; IF Unit (like a tens unit) for pain


          • #6
            I just read about that in the ICA e-Newswire. Ok, then. I don't recall being aware of that before. Oh! I did read on here once where somebody seemed to be wondering how long the patent was good for. I am also thankful Ortho will continue to sell. Yep! I don't know all the ins and outs. Of course, I must figure they can still sell without a patent. At least, I do have good insurance now.(state employee) That must be one medication that will never get advertised on a commercial. Ok. I do know there are other medications that we don't see advertised on television. Anyhow, I do know Jill tries to stay on top of things and that she probably deserves many thanks by now.


            • #7
              I too am blessed to have good insurance that covers my Elmiron.

              NO generic drug has ever worked the same for me...not Percocet, Prozac or Neurontin. They all have to be "DAW", which is a higher co pay, but worth it.

              I PRAY they continue to make Elmiron, although I have not yet been on it long enough to see if it will work for me.....


              • #8
                I have had alot of experince with generics and the "the real deal", the thing i worry about is the fact that generics dont have the same effect for me. So if a generic is made the price for me to get Elmiron, DAW will probly be to high for me to afford again...
                The NP I see at the time is already fighting the pharmacy to get me what i need while trying not to find herself in any trouble at the same time. We cant seem to control my IC because I cant afford the Utria-C, Lyrica, CystoProtect,....(To name a few but the list goes on)
                So I repeate my main worry, that I wont be able to even get Eliron if they create a generic.I guess its somthing to add to my prayer list.


                • #9
                  Elmiron $700.99 for #180

                  I am grateful:woohoo: I do not have to pay cash for Elmiron. That is CVS's cash price here in Orange County CA.

                  For all of you struggling w/this issue.....I've been there and it is horrific!

                  I hope if there is EVER a generic Elmiron that it is just as effective. Generics differ in quality and all of us respond so independently and sensitively to meds there would probably a plethora of responses to any generic Elmiron.
                  Last edited by ICNDonna; 01-10-2010, 03:01 AM. Reason: Removed link to extremely negative site.


                  • #10
                    Most if the medications I take (with success) are generics. I know there are a few that don't work for some people, but for me they are life savers.

                    Stay safe

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                    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

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                    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

                    Anyone who says something is foolproof hasn't met a determined fool


                    • #11
                      Generics can be great

                      You're right they can be very effective and I always try them. But, when you receive a generic Rx, the insurance company negotiates to bulk buy w/wholesaler/shippers. Guess which one they choose-- all of us know the answer. For awhile I had to use Vistaril p.o. instead of Atarax.

                      Later, I went back to Atarax. Before I was up to 100 mg Atarax at bedtime nightly. Now, it's 50- 75 mg. Now, the question is-was it changing similar meds back and forth or the generic?

                      Dr.. Parsons told me Dr. Theoharides does NOT believe in generic Rxs. I would keel over financially w/the costs of all brand names-- as it is there are too many that don't have generics available.


                      • #12
                        I'm not on Elmiron but I have mixed feelings. There are definitely some meds where generics vs. brand make a difference; I know thyroid meds and some mental health meds it can cause problems to switch. But in my experience the key is to stay on the brand or if you are on a generic for one of the more sensitive medications, to stay with the same manufacturer - which is hard if you have to switch pharmacies. Staying with the same manufacturer can eliminate problems with different fillers bothering you or if the absorption rate is a little different.
                        Diagnosis: IC, VV, anxiety


                        • #13

                          Our insurance company decided not to cover the Elmiron and it would cost me almost $700. My urologist called the insurance company and explained to them that it was medically necessary and nothing else works, etc. Once again they will cover it, but I have to pay about $110. Still way to expensive along with my 20 other prescriptions, but at least I can now use it.

                          My husband is in his 70's but has to work full time to have insurance and pay for all the medications. He is a very special person!

                          Thank you to Ortho McNeil to continue with it!!


                          • #14
                            I've stopped taking my Elmiron because it's so expensive. I'm not sure it's had any affect on me since my frequency and pain haven't decreased. I'm going to have to drop my insurance also. $968/month for just me plus meds is way too expensive. I'd love everything generic/cheaper. Frankly, if there's nothing that can cure this, where's the benefit? I've had some periods of reduced pain, but that was more than 6 months ago.


                            • #15

                              I have not been on the ICN site for quite awhile. I was diagnosed in 2004, and elmiron was my LIFESAVER! It took a whole YEAR for it to kick in, but once it did, my life turned around. I still am careful w/diet, but can eat almost everything except citrus. I faithfully take it 3x daily and honestly don't know what I would do without it. My insurance is quite good but I still pay a $50 co-pay. I would pay $500 if I had to!! It was the ONLY thing that helped me... I am glad to hear that the patent has been extended. Does anyone know for how long the extension is for? Just the thought of not haviing it available to me is frightening. Any information on that? Liz