The shortage of colchicine in the US is a national emergency for all Americans relying on colchicine for their quality of life, and in many cases life itself.

Though I write from the UK, I have many American friends. Selfishly, I also fear that the terrible injustice forced on my friends in America will also be adopted by my government and others round the world.

Anyone who relies on colchicine for their wellbeing must act now. Anyone with any compassion, decency, or sense of justice should join the fight.

Colchicine Crisis Background

The FDA have recently approved colchicine as a brand for treatment of gout and Familial Mediterranean Fever (FMF). Colchicine is derived from the autumn crocus and has been recognized as an anti-inflammatory painkiller since ancient times. It has been available as a generic drug for decades, and there is no justification for allowing any branding rights.

In my earlier reports, I was unaware that the FDA gave exclusive colchicine rights to URL Pharma. I have learned that not only is t this true, but also URL Pharma are actively suing, or preparing to sue all other colchicine providers.

We require urgent government investigation into the forces that pushed the FDA into what is quite probably an illegal granting of the license on colchicine. But, more urgently, we need action now to suspend the FDA action immediately to prevent unnecessary suffering, and even death.

Colchicine Killer Crisis

For gout sufferers, there are (less effective) alternatives to colchicine, but this is not the case for FMF sufferers. I cannot state the case more urgently or more eloquently than Nancy Sparks Morrison has done in Colchicine and Colchrys – the PROBLEM. For Nancy and other FMF sufferers Colcrys is a killer that must be stopped now.

Is the misery of painful suffering, and worse, worth a few extra dollars for URL Pharma?

Price for generic colchicine has been about 11 cents per 0.6mg tablet.
Price for colcrys is going to be approx. $5.00 for 0.6mg tablet.

Except for the fact that I will DIE without colchicine treatment which completely stops the production of amyloids leading to death for FMF patients, I would agree with the complete boycott of colcrys.
Secondly, I will be unable to afford colcrys in any case.

I am terrified that I will go back to being bed-ridden and in excruciating pain, and DIE because I can not afford colcrys. I do NOT want to DIE.
,
Someone needs to look into price fixing.

The same substance. The same production cost. Profit from pain has never been more cynical, more unjust, more immoral than this.

Please Help Stop This Profit From Pain

Nancy has set up a FMF support group. Please join it and become active in your support for this campaign against pharmaceutical terror.

Please help those who need colchicine find it at an affordable price.

If you can help campaign against this injustice, I’ll see you in the forums, otherwise please just pass this on.

Leave this colchicine discussion to browse the Gout Treatment Forum

53 Comments

    • goutispainful29

      Unfortunatly you guys have Colcrys all wrong. No one is going to pay $5.00/pill for Colcrys and URL knows this. Thats why commercial insurance plans have a $25.00 Voucher that makes Colcrys 30 count bottles about 83 cents per pill. Also you only take 3 pills for an acute gout flare with Colcrys and most Physicians were dosing it to toxicity (8 or more pills). Colcrys also has over 50% less GI side effects. Since the early 1970’s it has been reported that nearly 200 people have died related to Colchicine toxicity. The FDA asked all of their Colchicine manufacturers in the USA to get the drug approved and all but one stuck their nose up at the FDA….that one was URL pharma. With several hundered million dollars in clinical trials and development cost…no wonder its a bit expensive right now. Also URL has expanded their patient assistance program to 6X the US poverty level to qualify (you can make $130,000 or so per year and still qualify if you dont have insurance) and those patients can receive a bottle of 30-60 for $15.00. With the Vouchers on a 30 count bottle from a Wal-Mart pharmacy you will pay $2.49/acute gout flare and with Colcrys you will pay about $2.50. Plus one 30 count bottle of Colchicine will only last about 4 or 5 flares and Colcrys will last for 10 (it also has a 36 month shelf life). Lets compare – why is Chevy charging as much as a fully loaded Tahoe for its new vehicle the Volt. I mean its still a car and still gets you from point A to point B but the Corporate Avearage Fuel Economy standards are forcing them to make a small car at this price because it is a new way of doing something old. Much the same with Colcrys…its a much safer, cleaner, and easier way of taking an old med but its going to cost a bit. IF you want to blame anyone blame the FDA….they started this whole Colchicine fiasco in the first place. However Colcrys gives new life to an old way of treating gout.

      • In the interests of free speech, I try to allow everyone to express their views on matters related to gout.

        This response from goutispainful29 would have more credibility if there was some proof to accompany the claims.

        If the issues were purely to do with safety, then there are much better ways to tackle this. Clearly this Colcrys fiasco has much more to do with money than health. No amount of pitching from it’s supporters is going to change that.

        • hansinnm

          GoutPal says: “This response from goutispainful29 would have more credibility if there was some proof to accompany the claims.”

          Here is what goutispainful29 says: “Plus one 30 count bottle of Colchicine will only last about 4 or 5 flares and Colcrys will last for 10 (it also has a 36 month shelf life). ”

          I am the proof, LIVING PROOF, (so far still living, if barely, 😥 ) not for goutispainful29, but for a 90 count bottle of Colchicine, bought in January of 1996 and the last pill taken in January of 2010. My 90 count bottle lasted a hell lot longer (14 years) and for more than just 15 flares (his claim) than his “30 count bottle of… Colcrys [which] will last for 10 flares and a 36 month shelf life.”

          • Thanks Hans.

            The other claims that seem totally unbelievable to me are:

            1. nearly 200 people have died related to Colchicine toxicity (there have been a few from injections, but that was solved by withdrawing the injectable form)
            2. The FDA asked all of their Colchicine manufacturers in the USA to get the drug approved (how and why?)
            3. several hundred million dollars in clinical trials and development cost (where are the financial statements that back this?)

            The last sentence is at best misplaced salesman’s zeal, but I prefer the description of a lie. The sentence before that has a ring of truth in blaming the FDA as they have acted immorally. Also.

      • Susan

        You obviously work for, or are somehow realted with URL Pharma. Most of what you offer seems straight off of thier web site……

        Bottom line is that URL Pharma saw a money making opportunity and went for it. I was told by URL Pharma, since I have no medical insurance I could apply for assistance once I was screened through a company that requires 2 years of my personal tax returns!

        No way I’m giving anyone my personal tax returns. This is just devastating. No one in our government is looking out for us anymore.

        • You have my sympathies, Susan, but I truly believe that this has happened because apathetic Americans have allowed it to happen. It is almost 2 years since I was outraged by this fiasco, and although it does not affect me personally, I hoped I could help people campaign against it – nobody was interested.

          Governments never help people. The people who run them do it for personal profit and power. To get what you want, you have to make it easier for them to listen to you than ignore you.

          On this specific issue, the best option is to import colchicine from elsewhere, but if you are taking it for gout, then it is even better to get your uric acid under control – then you will not need colchicine.

      • Michael S.

        I don’t feel that you have your facts straight. Here it is 2012, March to be exact. Colcrys is significantly OVER $200.oo for a 40 piece scrip. It is expensive enough that most health insurance providers are placing restrictions on the amount that can be acquired per month. I have gout and it is recurrent. I am in a constant pain with each step. The Fed needs to lift the monopoly and allow for competition which will cause lower pricing.

        • Hi Michael,

          I’m sorry you have been troubled by goutispainful29’s comment, but if I censored everyone who came here with strange views, I would never have time for anything else.

          Please always remember that the right way to treat gout is to make sure your uric acid never goes over 5mg/dL (0.30mmol/L). Then, after several months, you will not need colchicine.

          I accept that even for 6 months, the burden of Colcrys pricing is too much. It is a huge pity that so few American gout sufferers showed any interest in campaigning against this when I first raised it. I was underwhelmed by the response to campaigning here, but would advise anyone who wants to help to contact Nancy at FMF (various links on this page).

          I recall seeing something about the deal expiring around June this year. Anyone have more info on this?

  • skremprime

    FDA and Big Pharma have their place , but thank heavens not in Canada. I have suffered with Gout for 37 years and have seen colchicine go from an over the counter drug to one requiring a perscription. Generic drugs are well received in Canada and we are not held to ransom by big Pharma. When a corporation is given a patent on a drug that has been around as long as colchicine has…….. wait….. what is the US goverment thinking!!! Come to Canada, if you need colchicine.

    • skremprime: Come to Canada, if you need colchicine.

      That’s a good option if you’re near the border, but not for the majority of US citizens.

      I know that if I were in a similar position I would be concerned about quality issues and customs interference when buying from abroad.

      Has anyone any experience of ordering colchicine from Canada or beyond, into the US?

  • Dan

    I am not a pharmasist nor am I a chemist and I never new the colchicine was derieved from the autumn crocus. People have been drinking safron tea for centuries it also is from the autmun crocus. You can grow enough in a window box to last along time. I dont no what part of the plant makes colchicine but the stigmas are used for tea. Maybe drinking the tea will help? I dont no.

    • Colchicine CAN be poisonous. Do not try to make your own.

      I do not know if the ‘tea’ has any colchicine in it, but it would be extremely dangerous to try to do that.

      I have ordered my colchicine from Canada. Have been on it 5 days now and it seems to be doing just fine for me so far.

      I ordered from 77canadapharmacy.com

      Cost more than US colchicine previously, at $102.00 for 200 pills and that includes shipping and handling. Will be able to get SOMETHING back from my insurance but not sure how much. However that is certainly less than what I would have been paying for Colchrys at $5.00 per pill. The brand name is ODAN, made in Canada.

      Thanks for all your help!! 🙂
      Nancy

    • No, we are talking about an industrialized pharmaceutical process that is required to produce proper life-saving and misery-reducing medication.

      Though originally derived from autumn crocus, colchicine has become an extremely cheap drug to manufacture.

      Nothing has changed in the manufacturing process, but the FDA have given URL Pharma an exclusive deal to charge almost 50 times the price.

      It is blatant profiteering, and it stinks that a public body that is supposed to protect citizens is putting those who cannot afford it at risk.

  • Dan

    I was not trying to down play the pirartering of this drug. As an American I now that there is nothing more important to our polatitions than money. Most of it comes from pharmaceutical companies(Merek killed 80k people and was left of the hook). The FDA(federal democratic assistance fund)Is set up to help the rich and not the people,That will never change here. To much in the way of campain controbutitons.The only thing normal people can do is try to help each other cause it is not a voting year and unless you can hand a polatition a couple million dollars they arent going to listen.

      • hansinnm

        Billionaire Kevin Trudeau, author of: “Natural Cures They Don’t want you to Know About” has been sued and is suing FDA for their unfair (to put it extremely mild) behavior towards the American public and the downright criminal support of the American pharmaceutical industry. While I don’t agree with everything he says in his book, one thing I do agree: Between the pharmaceutical industry and the FDA, the average American is, how do you say? between a stone and a hard rock!?!?!? And: “It is all about MONEY. I, personally, have my doubts that we, as average Americans, can fight and win this battle, simply because the cards are stacked: Most of our legislators are lawyers, lawyers are getting rich fighting for the pharmaceutical industry, and they are making damn sure that their clients make lots of money so that they can “buy, bribe, extort, etc.” and pay their outrageous fees.

        I consider this to be a reality, not an excuse for not fighting them, being in my 80th year on this planet and 53rd in this country.

        • Nicely put, hansinnm.

          It seems hopeless sometimes, but at least you have raised one voice. A few million more might bring some changes.

          Perhaps small victories are all that are available at this time – like buying generic colchicine from reputable Canadian pharmacies.

  • Dan

    YES the all mighty Food and Drug Adimistration. I would change (the lawyer get rich) to pollitions, lawyers and the pharmaceutical companies all get rich at the peoples pain.

  • anonymous physician

    I’m a physician. I’ve been asking around other physicians. I’m impressed how few physicians know about this. I just found out about this myself. Make some noise with your doctors, you might find it’s a surprise to them. I just found your site here myself, because frankly, I didn’t believe the story. Guess it’s true.

  • anonymous physician

    Hello again. I’m looking for links, citations for this story. Not that I doubt you, mind you, but I need primary source information if I’m going to make noise about it. What I can do as an individual physician, I don’t know, but I like to make noise………

    I understand the concept of the FDA wanting to clean up the loose ends of these old drugs that predated the FDA. They want safety and efficacy proven. Seems one manufacturer did what the FDA wanted.

    What I’m looking for, are citations and links about the other part of this. Will the generic colchicine be removed from the market? Are existing manufacturers now, or in the near future, prohibited from manufacturing generic colchicine? I’ve read accusations that the manufacturer has filed lawsuits against the generic manufacturers, trying to get them to cease and desist from manufacturing the generic.

    I’m looking for specific news citations. If anyone can provide the links and citations, I promise I’ll put them to good use.

  • “Will the generic colchicine be removed from the market?”

    First, the FDA told me that there was NEVER any generic colchicine, only ILLEGAL colchicine. Secondly, URL Pharma has a 7 year hold on colchicine as the primary ingredient of their colchrys development. They have ‘branded’ colchicine with the help of the FDA. So there will be no ‘generic’ colchicine for that period of time. Watson Labs has stopped production of their colchicine product. After the other labs run out, and stop shipping to pharmacies, the only available source in the US is going to be URL Pharma. I suggest you write to them about this.
    See:

    FDA Approves URL Pharma Inc.’s Colcrys(TM) (colchicine, USP) for Prevention of Gout Flares
    10/19/2009
    URL Pharma Inc. announced that the U.S. Food and Drug Administration (FDA) has approved Colcrys(TM) (colchicine, USP) for the prophylaxis (prevention) of gout flares. Colcrys was first approved by the FDA on July 30, 2009 for the treatment of acute gout flares when taken at the first sign of a flare. Colcrys is anoral, branded form of colchicine that has been formulated for optimal efficacy and tolerability. It is the only single-ingredient colchicine to be approved by the FDA for the prophylaxis and treatment of gout flares. Colcrys provides a formulation with the efficacy of colchicine while avoiding most of the toxicity of the unapproved products historically on the market. Colcrys is also indicated for the treatment of Familial Mediterranean Fever (FMF) in adults and children 4 years of age or older. Colcrys is available via prescription at pharmacies nationwide. Two randomized clinical trials assessed the efficacy of colchicine 0.6 mg twice a day for the prophylaxis of gout flares in patients initiating treatment with uric-acid lowering therapy. In both trials, treatment with colchicine decreased the frequency of gout flares. Colchicine has been shown to be well-tolerated when paired with uric acid-lowering agents such as allopurinol. The dosing of Colcrys for gout flare prophylaxis is one tablet (0.6 mg) once or twice a day. The maximum daily dose for prophylaxis is two tablets (1.2 mg). The most commonly reported adverse reaction in clinical trials of colchicine for the prophylaxis of gout was diarrhea. In the presence of mild-to-moderate renal or hepatic impairment, adjustment of dosing is not required for use in gout flare prophylaxis, but patients should be monitored closely for adverse effects of colchicine. In patients with severe renal impairment, the starting dose for prophylaxis of gout flares should be 0.3 mg per day and any increase in dose should be done with close monitoring. For patients undergoing dialysis, the total recommended dose for prophylaxis of gout flares should be 0.3 mg given twice a week with close monitoring. In patients with severe hepatic impairment, a dose reduction may be needed in prophylaxis

    Might want to talk to the FDA as well.
    Nancy

  • Dear anonymous physician,

    The links in my articles to the FMF support group, and to the forums here, provide plenty of independent proof that there is a real problem here.

    One comment in particular in the FMF support group sticks in my mind. It is from someone in the pharmaceutical industry – not URL Pharma – who had a massive sales drive prior to the Colcrys announcements to off-load their stocks. Due to the nature of the supply chain, this means that right now, there are some distributors with plenty, and some pharmacists who are already noting the massive price rises. The piecemeal effect of shortages has played right into the hands of Killer Colcrys as they have dissipated the outrage.

    Personally, I think you are very naive if you believe that the FDA are motivated by safety and efficacy. If this were true, there is plenty of action that they could have taken without awarding exclusive licenses. I’m sorry if this sounds harsh, as I truly welcome any help you can bring to this, but it is absolutely obvious that this is all to do with money.

    I beg of you, if you can bring any influence to bear, then please do it now.

  • anonymous physician

    “Personally, I think you are very naive if you believe that the FDA are motivated by safety and efficacy…..”

    Sheesh, no kidding. Is that how you get people on your side? Though not doubting anyone here, there is one detail I’m trying to nail down.

    One drug company has branded colchicine. OK. That part I know, and is on the record.

    Are the established companies prohibited from making generic colchicine? I’m looking for documentation of this. All I’m hearing is “I’ve heard” and “I was told”. Same about the story that the brand-name manufacturer is litigating to drive the generic manufacturers out of the market.

    Does anyone have any links? I’m not going to approach public officials or newspapers with hearsay.

    • Ok, here is the announcement that FDA has approved colchicine under the brand name colcrys.

      FDA Approves Colcrys(TM) (colchicine, USP) For Prevention Of Gout Flares
      http://www.medicalnewstoday.com/articles/167904.php

      Also see:
      [google books =when+a+product+is+branded,+what+happens+to+the+generics – invalid link removed]

      If a maker of colchicine try to infringe on URL Pharma’s “patent”, it can be sued. No generics are allowed for 7 years after a drug is branded to allow the branding company to recoup the expense it put up to do the testing.

      “How does a drug innovator protect its product?
      When a developer of a new drug chemical believes it has a useful product, it may decide to apply for a patent, which if granted, will typically last for twenty years, depending on the jurisdiction in which its issued. This means that, among other rights, that the drug developer – the originator of the drug – has the sole right to obtain regulatory approval of, manufacture and market the drug, or license others to do so, during the life of the patent. Also, the brand name of an innovative drug is often protected as a trade mark and cannot be used by any other party. Developers often secure additional and ancillary patents after the initial patent is issued, in order to prolong their period of exclusivity. ”

      Search this site for more on colcrys
      http://www.google.com/search?hl=en&rlz=1G1GGLQ_ENUS351&ie=ISO-8859-1&q=colcrys&btnG=Search
      Nancy

    • Sheesh, no kidding. Is that how you get people on your side?

      Sorry, on this side of the pond, we are allowed to express opinions. I do not want to mislead anyone by hiding my feelings. This is not really a fight of mine – I’m just trying to give it publicity.

      Personally, I don’t take colchicine, but I am appalled at the treatment of people who need help, by those who should know better. It is not about taking sides – it is about treating people properly. I have no time for people who put profit before people, and not a lot of time for those who sit on the sidelines watching it happen.

      It is easy to find excuses for doing nothing, and it is easy to find the legal situation (e.g. my comment of November 4, above).

      California Court Denies Preliminary Injunction in Lanham Act Case Concerning Unapproved Colchicine Drugs [from one of several legal links on that page] In 2007, Plaintiffs [Mutual Pharmaceuticals – generics arm of URL Pharma] applied to the FDA for an orphan drug designation for its colchicine product. See 21 U.S.C. §§ 360aa-ee. On July 29th and 30th of this year, through the orphan drug approval process, the FDA granted to Plaintiffs a three-year exclusivity period to market their branded colchicine product – renamed Colcrys – for the treatment of gout flares and a seven-year exclusivity period for the treatment of FMF. After obtaining FDA approval and exclusivity, the price of Plaintiffs’ Colcrys increased from approximately $9 per bottle to $485 per bottle. According to Plaintiffs, despite the
      exclusivity period granted to them by the FDA, Defendants [Watson, West-Ward, Excellium, and Vision] continue to distribute their competing colchicine products at substantially lower prices.

      Blah, blah, blah. $ $ $

      I’m sorry that you are offended by my tone – I thought Americans were made of stronger stuff. No wonder the thieves and vagabonds of the FDA & URL Pharma are running rings round you.

      • P.S.

        Apologies to Nancy if this is detracting from your fight. I should be doing more to promote your cause, but I’m having difficulty fining the time.

        To everyone else:
        Had this been in the UK, I’d have chained myself to Parliament (or similar stunt to publicize this outrage). Short of someone flying me over to invade the White House, I only have words.

        I’ll hold my comments in check in future until I cool down.

  • anonymous physician

    Here’s something.

    http://www.fdalawblog.net/files/colchicine—decision—2-09-cv-05700-pa-rz.pdf

    and

    http://dockets.justia.com/docket/court-cacdce/case_no-2:2009cv05700/case_id-450709/

    In the latter, I notice multiple defendants. This “may” represent various manufacturers of generic colchicine.

    I noticed this same company with respect to another drug, quinine, used “off-label” for nocturnal leg cramps. They might be playing the same game with that drug.

    Seems they’re using litigation to sue the generics out of the market. But not a lawyer.

    This is something I can work with. Look around and find original source links. Don’t approach newspapers and elected officials with hearsay.

  • anonymous physician

    I think this post dropped off or something. I’m on your side, I really am. Here’s what I mean be original documentation.

    http://www.rfcexpress.com/lawsuit.asp?id=51388
    http://www.fdalawblog.net/fda_law_blog_hyman_phelps/2009/10/california-court-denies-preliminary-injunction-in-lanham-act-case-concerning-unapproved-colchicine-d.html

    Look for “Mutual Pharmaceutical Company, Inc. et al v. Watson Pharmaceuticals, Inc. et al”

    Almost the very instant the company got FDA approval for the branded colchicine, they immediately filed suit against the generic manufacturers. From there, I don’t know all the legal ramifications, but clearly their intent is to clear the market so you will have no choice but to buy their five dollar pills instead of the ten cent pills.

    If they actually had a new drug, or even if they’d done something new with the old drug, I’d say they had a point, even if a bad point. But as best as I can tell, all they did was use a combination of govenrnment FDA bureaucracy and good old litigation to clear the market for themselves.

    “CRY HAVOC !! And let slip the dogs of law.”

    Anyway, now this is something that might interest a reporter, or you can present to your local congresscritter.

    • We have contacted everyone here in the states that we can think of, written to our law-makers, the President, but because we are so far flung and in actuality so few of us, we can not get any lawyer to take this and have been told that we have no class action lawsuit by a couple of lawyers. We have written to the newspapers where each of us live, and all of the national news channels, reporters, and talk show hosts where we think we might have a story. Don’t remember the legal ramifications of why no suit..

      Nancy

  • skremprime

    Hi Guys,

    Thumbs up to both Goutpal at to the brave anonymous physician. Looking from my perch here in Canada I have sympathy for both of your views. I applaud our physician for making an attempt to understand the crisis and the need for links in what has been happening in the States. Those of us that do suffer from gout tend to get a little uptight when questioned about our Knowledge related to gout. I have spent decades researching anything I can find about the topic and when confronted with a doubter I tend to forget that they are not suffering from Gout attacks and usually don’t understand. I have had many M.D.’s treat me for my condition and it boils down to the fact that colchicine works (get new script) and don’t leave home without it. The states have a problem with socialized medicine that does affect Canada. Many of our Medical Professional people emigrate to the States to make more money (nuff said on that). For those of you that are sourcing colchicine from Canada, make sure that It has been manufactured in Canada, not third world sourced.

  • Yes, I have seen the source you noted Doc, just had lost the url. Thanks for sending it again.

    For those w/ gout whose doctors don’t believe, BELIEVE me, those of us w/ FMF can surely sympathize. Doctors are still
    questioning my diagnosis. I had an infection, went to an Urgent Care facility. I had no fever, in fact what came up was my
    normal temp of 95.2. But tests did show a bacterial infection. That along w/ the FMF can just about do me in if I don’t get
    an anti-biotic quickly enough.

    Now here is something that I just found on FMF that may affect more of us than we now know:

    Hereditary periodic fever syndromes.
    Hematology Am Soc Hematol Educ Program. 2005;:74-81
    Authors: Kastner DL
    The hereditary periodic fevers are a group of Mendelian disorders
    characterized by seemingly unprovoked fever and localized inflammation. Recent data
    indicate that these illnesses represent inborn errors in the regulation of
    innate immunity. Pyrin, the protein mutated in familial Mediterranean
    fever, defines an N-terminal domain found in a large family of proteins involved
    in inflammation and apoptosis. Through this domain pyrin may play a role
    in the regulation of interleukin (IL)-1beta, nuclear factor (NF)-kappaB, and
    leukocyte apoptosis. Cryopyrin/NALP3, another protein in this family, is
    mutated in three other hereditary febrile syndromes and participates in the
    inflammasome, a newly recognized macromolecular complex crucial to IL-1beta
    activation. Somewhat unexpectedly, mutations in the 55 kDa receptor for
    tumor necrosis factor also give rise to a dominantly inherited periodic fever
    syndrome, rather than immunodeficiency, a finding that has stimulated
    important investigations into both pathogenesis and treatment. Finally, the
    discovery of the genetic basis of the hyperimmunoglobulinemia D with periodic
    fever syndrome suggests an as yet incompletely understood connection
    between the mevalonate pathway and the regulation of cytokine production. These
    insights extend our understanding of the regulation of innate immunity in
    man, while providing the conceptual basis for the rational design of targeted
    therapies, both for the hereditary periodic fevers themselves and other
    inflammatory disorders as well.
    PMID: 16304362 [PubMed – indexed for MEDLINE]
    Nancy

  • I just received a post from a reporter at the Wall Street Journal. They are doing an article on the cost of Colcrys and the crisis amongst
    those of us with FMF who need a larger supply of colchicine. I now understand that my monthy supply of colchicine BEFORE whatever my
    insurance will cover will be a little over $400.00 American dollars.

    Will send url when report comes out in the journal.
    Thanks for all your help and support.
    Nancy

    • anonymous physician

      I took the liberty of referring your name, this website, and your website, to the reporter. Hope that’s OK.
      We spoke for some time, to get him up to speed on the story.
      The same thing is happening with Quinine. Turns out, it’s the same company.
      Seems their plan is to take medicines that grandfathered into the FDA,
      They never had formal “safe and effective” studies, because the drugs are older than the FDA.
      Heck, some are older than the United States.
      They do studies on them as though they were new.
      They go on to get FDA approval and market exclusivity.
      Appears to me, taking advantage of a certain loophole.
      Government “rent-seeking” followed by “lawfare”.
      Meaning, they sue all the generic manufacturers.
      Who’s going to spend millions to defend against a lawsuit, when the best that could happen is they win the right to sell an old generic for pennies, not much profit.
      So, they fold up, stop making the generic, and the business gets a monopoly, and prices accordingly.
      Thought a story like this would be perfect for the Wall Street Journal.
      I’m glad they’re pursuing the story.
      I’m looking forward to seeing the story in print, should be interesting.
      Usually, when I’d tell someone, reporters, etc., even doctors, they would be appalled, but they didn’t seem to believe me.
      Heck, I didn’t believe it myself, until I verified for myself.

    • anonymous physician

      How much Colchicine do you need?

      What I’m saying is, I called my local Wal-Mart Pharmacy, here in the rainy Pacific Northwest.

      Colchicine 0.6 mg #30, is four dollars.

      So it’s still on the Wal-Mart $4.00 list in my area. Trying to figure out if this IS a problem, or is GOING TO BE a problem.

      • hansinnm

        As of now, Dec. 22, 2009 the Walmarts in New Mexico (Albuquerque, Santa Fe area) still have Colchicine 0.6 mg #30, is four dollars, too.

        • It is NOT about being UNABLE to get ANY colchicine. It is about NOT getting West-Ward brand of colchicine. I can find no pharmacy
          in my area that is carrying anything BUT West-Ward. There is something WRONG with W-W brand. I was in the hospital 3 times
          JUNE; JULY; and Aug/Sept for flares of my FMF before I figured out what was wrong. Only then did several others on my fmf_support
          group note that they too were having an increase of flares. I tried uping the dose of W-W, still didn’t work before ordering colchicine
          from Canada.

          I will talk w/ my Medicare Part D insurer on Monday and see how much they will pay for the Colcrys although I HATE to buy from them
          just because of principle. Going to see if my physician will be able to get samples of colcrys as well. He is helpful about giving me
          samples of the 2 expensive drugs I do take when he has them. It helps.

          More when I know more.
          Love
          Nancy

  • anonymous physician

    That is, of course, generic Colchicine 0.6 mg #30, no refills, not brand-name Colcrys.
    So I’m saying at least in my area, the generic is still available.
    Trying to figure out if you need some extraordinary large amount of the drug, or if the generic is not available in your area.
    Trying to figure out if Colcrys is your only choice, no alternative available…….because cheap generic is still available in my area.

    • The generic supply is very patchy.

      As you quite rightly commented earlier, the generic manufacturers had little to gain by an expensive battle to retain rights to a low profit generic. However, at least one of them had the business sense to do a strong marketing campaign before they lost their right to supply. I have no idea how much has been stockpiled by the more savvy wholesalers and retailers, but I would imagine they went for as much as they could get.

  • Colchicine in my area of West Virginia, USA is spotty at best. I have been unable so far to find any pharmacy who has much, and most of what I have
    found is by West-Ward. This brand of colchicine is useless. There is something wrong with it. I and several of my friends were switched when
    Watson brand stopped production and pharmacies were unable to get more. All of us got sick, had severe flares and I was in the hospital 3 times
    between June, July and late Aug/Sept. All from various INFLAMMATIONS. I am only now beginning to feel as if I am heading toward
    what is ‘normal’ for me. I am in Physical Therapy for the weakness and loss of strength that the above illnesses caused.

    I can walk on the treadmill a little over a third of a mile in 13 minutes now. That is better than having to hold onto the walls and furniture and not being
    able to rise from a seated position without help. I still have to help myself up the stairs, using both hands on the handrail but it is taking less force to pull
    me up.

    I will write when I have been able to reach Wal-Mart. We have had and are still having snow. I am in for the count for several more days
    at least 🙂 I do not go out in the snow!
    Nancy

  • Hi Guys!

    Hi Guys!

    For 3 tabs of colcrys per day, my cost will be $90.00 per month and with this ONE drug, I will be put into the donut hole before the year end, where I will have to pay the whole cost of four hundred and some dollars, per month, not counting my other drugs.

    It will be cheaper for me to pay out of pocket, I THINK, the $100.00 per 200 hundred ODAN colchicine from Canada and use the AARP program for my other drugs with perhaps help from my doctor giving me the brand name drugs that I use as samples when he can.

    We NEED to keep working on this and hopefully with help from the Wall St. Journal article and the Washington free-lance reporter, we can do something about this. I will DIE without colchicine. It is a crime that I and others who do not have this even little bit of coverage will have to suffer or go without eating if we want to continue to LIVE.

    If those of you living in Turkey, Israel and other countries where colchicine is very cheap could help those who have no insurance or who have multiple family members needing to take this drug, it would be very gracious and kind of you.

    Sign me a VERY ANGRY
    Nancy

  • Familial Mediterranean Fever is an inherited ilnness that is being found amongst descendants of Appalachian ancestry.
    I do not believe the disease is rare, just being misdiagnosed as everything under the sun including, lupus,
    fibromyalgia, RA and osteo-arthritis and any other illness ending in ‘itis.’

    The following post is here because of Kaiser Health’s permission to post with credit from their site:

    The High Price of FDA Approval

    There are NO Melungeon diseases.

    Familial Mediterranean Fever is an inherited ilnness that is being found amongst descendants of Appalachian ancestry.
    I do not believe the disease is rare, just being misdiagnosed as everything under the sun including, lupus,
    fibromyalgia, RA and osteo-arthritis and any other illness ending in ‘itis.’

    The High Price of FDA Approval

    By Harris Meyer

    Dec 29, 2009

    Several months ago, Doris Webb was diagnosed with a rare disease called Familial Mediterranean Fever, a hereditary condition tied to her French ancestry that causes fevers, arthritis attacks and inflammation of the lining of the lungs and abdomen. Debilitating pain in her joints and bones was relieved by a prescription drug called colchicine.
    To read the rest see:

    http://familialmediterraneanfever.blogspot.com/

    Love
    Nancy

  • I am going to try to express myself, but am holding on to my temper because I do NOT understand the above post.

    Whoever Dusty Wood IS, he or she certainly is showing NO compassion on this list with replies like the above. You can not GET OVER FMF
    it is an inherited disease that at present is NOT curable and unlike gout which may be with you from time to time,
    FMF is a part of your everyday life.

    The problems with the FDA in the US in controlling colchicine causes problems for many of us. The cost of the pill which is supposed
    to cost about 3 cents to make, has risen here from a cost of about $10.00 per month to a cost of over $400.00 per month because
    of the FDA’s decision. It and the the disease are NOT something you get over.

    I appreciate the help of Gout Pal tremendously in dealing with this problem.
    Nancy

    • hansinnm

      Nancy Sparks Morrison:
      I am going to try to express myself, but am holding on to my temper because I do NOT understand the above post.
      Whoever Dusty Wood IS, he or she certainly is showing NO compassion on this list with replies like the above. You can not GET OVER FMF
      it is an inherited disease that at present is NOT curable and unlike gout which may be with you from time to time,
      FMF is a part of your everyday life.
      The problems with the FDA in the US in controlling colchicine causes problems for many of us. The cost of the pill which is supposed
      to cost about 3 cents to make, has risen here from a cost of about $10.00 per month to a cost of over $400.00 per month because
      of the FDA’s decision. It and the the disease are NOT something you get over.
      I appreciate the help of Gout Pal tremendously in dealing with this problem.
      Nancy

      Nancy, I understand your anger. I am angry, too. I have seen some of the remarks to your posts. I am glad you are holding on to your temper. Do not waste your time and particularly your energy on morons with no mind, intelligence, knowledge, experience, and compassion. If you try to explain, they’ll feed on that and thrive. Totally ignore all that they are saying and not being recognized will eat them up, eventually.

      With regard to FDA, if you, I, and everyone else likes it or not, the FDA has become a pawn for the pharmaceutical industry in their power play to control and exploit/extort the public. Don’t forget: The combined pharmaceutical industry is a trillion Dollar Powerhouse while the United States of American Government is a multi-trillion Dollar Poorhouse

      Hans

    • You are over-generous, Nancy.

      Hopefully, I’ve banned this fool, but they seem to have nothing better to do than find ways of posting rubbish.

      I have had to take the step of insisting that commenters must log-in before posting. There is a login form at the top every page. It requires a valid email address to get the initial login password, but I keep these addresses strictly private (except for spammers, of course, whose details get sent to their internet access provider and the police if necessary).

  • Nancy Sparks Morrison

    I am posting this for Jonathan with whom I have spoken about the problems with Colcrys etc. IF you need to post this on another
    area of goutpal, please do so:

    I am a reporter at the Wall Street Journal newspaper interested in discussing the experiences of gout sufferers who take Colcrys or unbranded colchicine. I am particularly interested in learning if anyone has experienced price increases or not. Please contact me at [email protected]. Thank you. Jonathan Rockoff, The Wall Street Journal

    thanks to all
    Nancy

  • Curiouser

    “Colcrys” is using a contemptible legal maneuver to monopolize sales of colchicine – one of the first alkaloids isolated in the early 1800s.  There is a fairly small difference between the effective dose and the lethal dose, but dosing is often “as needed” anyway – while using the chemical with known concentration is safer, the use of meadow saffron root, from which it was isolated, to treat foot pains, has been known from papyri from 1500 BC.  So it’s basically a big mafia racket, a miniature War on Drugs, but one which might be avoided.  I have read claims, as described in the article about colchicine in Wikipedia, that the FDA awarded three-year exclusivity – but now I see some pharmacies claiming that the company is trying to maintain a patent on the drug until 2029.  In any case, I would find it more morally acceptable to pay Los Zetas to shoot their way through police and innocent bystanders to smuggle adulterated black market meadow saffron roots to me than pay Colcrys one thin dime now or ever!  Though in actual practice, I don’t actually trust a drug meant to suppress gout symptoms entirely, given that the uric acid IS depositing and the body DOES have to clear it out somehow.

     

  • Andrew

    I commented in another topic about obtaining colchicine from a compounding pharmacy recently, and Keith suggested more info be posted in this thread.

    So here is the situation, according to my understanding. If your doctor writes a prescription for Colchicine for a dosage different than Colcrys is available in, a compounding pharmacy is allowed to fill it. Specifically: Colcrys is available only in .6mg tablets. So my doctor wrote a scrip for .5mg and voila! I was able to get that filled at the compounding pharmacy that (lucky for me) is located nearby. The cost was about $1 a capsule. Still more than colchicine used to be, but  much less than the $5 a tablet that Colcrys would cost me.

    You can read more about compounding pharmacies, and find one near you, at this website:  http://www.iacprx.org/

    Google also works quite well for finding a compounding pharmacy.

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