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    Maybe Its a Marketing Problem

    I have been engaged in an offline discussion with Spirit and Otter about the recent troll and spam attacks on MWO and how to defeat the trolls and offer a truly helpful website for people who could benefit from baclofen and medical treatment of alcoholism.

    Perhaps, as I believe Otter has suggested in the past, its simply a marketing challenge.

    I spent some time this early morning reading up on and comparing ALS (Lou Gehrig?s Disease) and alcoholism. As some of you may know supporters of finding a cure for ALS have been using the Ice Bucket Challenge and social media to gather support. They have succeeded big time.

    However.

    Consider that in the US only about 30,000 people have ALS and about 5,000 Americans a year die from it. This is horrible and tragic, but most of us have never known a person with ALS. This summer, social media is overwhelmed by video images of people taking the Ice Bucket Challenge and according to reports as a result about $41 million has been raised to help find a cure.

    By contrast, it is estimated that about 18,000,000 people have an alcohol use disorder in the US and each year about 85,000 Americans die from alcohol-related causes
    , including both accidents and injuries caused by excessive use of alcohol and chronic disease such as cirrhosis of the liver, as well as cancer and cardiovascular disease. It has been estimated that the combination of drinking and driving in the US results in one injury every minute and one death every 32 minutes.

    Moreover, excessive use of alcohol affects nearly every one of us and society overall in a major way.

    ? More than 50% of American adults (over 100,000,000 people) have a close family member who is an alcoholic.
    ? In 2006 (apparently the latest date for which figures are available), the estimated annual cost of alcohol abuse in the U.S. was $223.5 billion.
    ? One study has estimated that alcohol use disorders annually cost $56.7 billion more than the estimated annual economic cost of illegal drug use and $36.5 billion more than the estimated annual economic cost of smoking.
    ? In 1992 (over 20 years ago), the estimated productivity loss for employees with past or current alcoholism was $66.7 billion.
    ? The total cost attributable to underage drinking, including costs of traffic crashes, violent crime, injuries, and treatment, is over $52 billion per year.

    In sum, excessive alcohol use contributes substantially to serious automobile accidents and loss of life, physical and mental health problems and chronic disease, job loss and employee productivity costs, divorce and family breakup and financial problems, undue allocation of resources to law enforcement and court systems, and workplace accidents and loss of productivity. The list goes on.

    In the face of this problem a large part of the treatment response is residential rehabilitation and Alcoholics Anonymous, both helpful (to a point), but neither of which effectively addresses the disease of alcoholism from a medical point of view. Mothers Against Drunk Driving (MADD) have been remarkably successful in reducing underage drunk driving, yet the statistics for underage drinking show that it has not been curtailed.

    And yet, since at least 2008, it has been known that there is a medication, baclofen, which can arrest craving for alcohol in persons who abuse or are dependent on alcohol. Notwithstanding the anecdotal success reported by many (although certainly not all) people who have undertaken a course of baclofen treatment (no other medical treatment seems to work as well), acceptance by the medical profession and widespread use of baclofen has been inhibited in the United States for lack of definitive double blind clinical trials conclusively establishing its effectiveness.r />
    At one point I believe Olivier Ameisen stated that a clinical trial would cost (only) approximately $1 million. To date the Ice Bucket Challenge has apparently raised at least $41 million for ALS. To my knowledge, to date, no funds have been raised in the United States to fund a conclusive study of the effectiveness of baclofen for alcoholism. Clearly those of us who would like to see a medical cure for alcoholism are not doing the right thing to promote the cause.

    Even in the face of the recent tragic deaths of high profile celebrities Amy Winehouse, Robin Williams and Phillip Seymour Hoffman (all alcoholics) it seems we would rather wish away Lou Gehrig?s Disease, as terrible as it is, than confront a disease of epidemic proportions which impacts us all.

    Perhaps we do have a marketing problem.

    Cassander
    With profound appreciation to Dr Olivier Ameisen for his brilliant insight and courageous determination

    #2
    Maybe Its a Marketing Problem

    Interesting read, Cass, and I'm glad you bring these points up. I'm interested to hear what you and Spirit and Otter are thinking, too-- are you guys talking about possible actions?

    I wonder if anyone has ever raised money via crowdfunding for studies like this. Sounds odd maybe, but have people ever organized via Kickstarter/Indiegogo or some such, to gain funding?

    Comment


      #3
      Maybe Its a Marketing Problem

      Cass -you bring to light some very important points -thank you.

      From the CDC:

      Preventing Chronic Disease | Contribution of Excessive Alcohol Consumption to Deaths and Years of Potential Life Lost in the United States - CDC


      Conclusions
      "Excessive drinking accounted for 1 in 10 deaths among working-age adults in the United States. AAD rates vary across states, but excessive drinking remains a leading cause of premature mortality nationwide. Strategies recommended by the Community Preventive Services Task Force can help reduce excessive drinking and harms related to it."

      CDC also says that alcoholism (and related) is the 4th leading cause of death in America.

      1 out of every 10 people die because of alcohol!

      Can you imagine any other disease situation in the world that would get so little attention, and yet, be so destructive?

      Alcoholism -the shameful. hidden disease.

      SW

      Comment


        #4
        Maybe Its a Marketing Problem

        Wonderfully put together post, that raises an important point. I think the fact that there is no concerted effort, no marketing, etc., stems from the fact there is really no "we". There are a couple of tireless individuals that have been working at this for years, while for the most part, the rest of us have watched from the sidelines. Posting on a forum I don't think really counts when you are thinking in these terms.

        Comment


          #5
          Maybe Its a Marketing Problem

          Alcohol abuse is sweep under the carpet. You never stop hearing about the heroin problem were ever you go. If you have a look on YouTube and type on addiction you'll be hard pushes to find even a hand full of videos to do with alcohol abuse.

          I've given up to be honest. I applaud those who keep up the fight. I think there's a long way to go for baclofen to become mainstream. There needs to be money to be made. I'd happily like to see a new patented drug become available and for the drug industry to make a shit load of money. I hope baclofen becomes big enough to get the attention of the big companies. I don't see no reason they wouldn't jump on it if there was money to be made. Even just tweak it and re brand it. They do it all the time with ADs. I think Campral was meant to be the great next hope. I though it was useless personally.

          Comment


            #6
            Maybe Its a Marketing Problem

            I agree with everything you say Cassander. However alcoholism as a cause to unite against suffers from the following problems. People see alcoholism as a self inflicted disease. More so, most people drink alcohol but aren't alcoholics, and thus don't see why it's so hard to not be an addict and so the respect of its seriousness as an affliction is lost on them.

            This is in contrast to any other addictive drug I can think of, e.g. its a common belief of heroin or cocaine addiction that the first time you try it you are hooked. Even smoking cigarettes, societies perception is that we start smokng because of a misspent youth and we are trapped by the nicotine.

            Alcoholism is a different beast all together. it takes you slowly, I think Alan Carrs pitcher plant analogy I post below depicts it perfectly. I've been addicted to many different drugs opiates, benzos, nicotine. by far the most destructive and hard to quit due to cravings was alcohol.

            I think its a combination of how alcoholism manifests itself as an extremly crippling disease and peoples perception of it, that really hold it back in terms of treatment. Just look at our current gold standard treatment, AA... can you imagine if we treated depression and anxiety by praying to a "higher power" WTF. Instead we have to have pioneers like dr Amisen experiment on themselves based on animal studies.

            Alcoholism should be a lot higher on the agenda of diseases to cure, we already have solutions such as baclofen, but sadly its an uphill battle against the problems I mention.

            here is the pitcher analogy from Alan Carrs book, easy way to stop drinking - i found the book useless to stop my cravings, but it has some good analogies and idioms

            We know that alcohol is inherently a depressive, addictive drug. That is just a fact. The problem is in our culture we also see it is part of being fun, festive & social - you know, 'Happy Hour'. So, like the fly that begins to drink the sweet nectar of the pitcher plant, we begin to drink and love the intoxicating role alcohol plays in our life. Loosen up, have fun, relax. This becomes a ritual, a part of our lives. Yet the more and more we drink, we slowly fall into to pitcher plant, not even realizing we have done so. Months or years pass, and all of a sudden we are saying things like "God I need a drink" or eyeing the level of everyone's wineglasses to see if you are getting your fair share. These are little signs. Perhaps you are drinking more than you think you should, or more often. Perhaps you just need to drink more now to get your buzz on. They are not intentional decisions, but rather just what happens when you are drinking in the pitcher plant.
            01-01-2014 - Indifference reached, success with high dose Baclofen 295mg.

            Baclofen prescribing guide

            Baclofen for alcoholism - Consolidated Information - Studies, prescribing guides, links

            Comment


              #7
              Maybe Its a Marketing Problem

              bleep;1697972 wrote: Wonderfully put together post, that raises an important point. I think the fact that there is no concerted effort, no marketing, etc., stems from the fact there is really no "we". There are a couple of tireless individuals that have been working at this for years, while for the most part, the rest of us have watched from the sidelines. Posting on a forum I don't think really counts when you are thinking in these terms.
              Interesting perspective bleep. However I would like to offer a different view:

              (1) There is no 'we': Yes, there is a huge number of us 'we-s'. CDC guestimates that the actual number of people that abuse alcohol to a dangerous degree is probably closer to 20% of the population.

              Most WE-s are too ashamed and or too fearful to come out of the Alcoholic Closet. I suspect many of us WE-s already know this though.

              (2) Posting on a forum that serves the alcoholic community: I have to somehow believe that internet forums may be one the few ways that most alcoholics are now seeking help. I guess we may never actually know if we end up helping another alcoholic on a chat forum -but for now, I believe that legitimate chat forums and web sites are the single best way for alcoholics to learn about current and new solutions to the 'hidden' disease.

              Comment


                #8
                Maybe Its a Marketing Problem

                Cass - I truly think that you have hit the nail on the head: "Maybe Its a Marketing Problem".
                Why is alcoholism such a huge disease problem with no seemingly collaborative effort to communicate 'real' solutions? My reasons (opinions) are:

                (1) Money -that is, dollars being made by taxes on alcohol, research dollars, alcohol companies, therapists needing repeat business, etc....etc...: Cass, people making a huge profit from a disease or the result of a disease just don't have a huge incentive to cure the disease.

                WHAT A PERFECT MONEY MAKING MACHINE: Alcoholism. The governments make huge tax revenues (7% of states total revenue), the manufacturers make huge profits, the talk therapy community makes repeated income, the medical community services the results of alcoholism and makes money, the legal/law community receive huge streams of revenue from alcoholism(drugs),etc.

                (2) Shameful/Fearful disease: Not only is a problem drinker (alcoholic) fearful and shameful of telling someone they have a disease (problem), most true non-alcoholics are afraid to ask someone if they have an alcohol problem. A disease (or any problem) can not be addressed unless their is acceptance and communication of the problem.

                CONCLUSION (My opinion):
                (1) The middle 'men' involved with alcoholism derive too much profit from alcoholism to create a long term solution. Until revenue replacements are found, these profit receivers are not going to fight to kill their stream of income.

                (2) Alcohol is a viable solution to many, many people and most don't think 'they' have a problem -until it is almost too late. And even then, the alcoholic only finds relief from his or her disease by drinking more alcohol.

                Alcoholism is the only disease that tells a person that they don't have a disease. Many of have heard this and most of us understand this.

                (3) MARKETING: Legitimate medical solutions to alcoholism will have to made directly to the afflicted by -well, mainly the afflicted and/or the families thereof. The internet now makes this not only possible but a realistic approach. The afflicted will be the ones who end up teaching others (including local doctors) about the solutions.

                When someone is caught up in a shameful-fearful disease and that person wants help, the first place they turn to is the internet. THIS IS WHY A SITE LIKE 'MY WAY OUT' CAN BE OF SUCH GREAT BENEFIT and SUCCESS.

                Comment


                  #9
                  Maybe Its a Marketing Problem

                  I wonder which organization would receive the money, should the marketing problem be solved. The ALS association is made up of a board of professionals who determine where the donated money is spent. Is there anything similar for addiction?

                  Every single organization, profit or non-profit, government or private, is based on the psycho-social aspects of alcoholism and not the disease model. And they are staffed not with doctors, but with psychologists. Even the ones that are doing the scientific research.

                  So to whom would we gift the money to study the science of addiction?

                  Comment


                    #10
                    Maybe Its a Marketing Problem

                    This thread is reminding me that I need to go back and finish that documentary "The Anonymous People". That doc seemed like it was all about legitimizing alcohol as a disease research and coming out as an addict/alcoholic and not being shamed by it. It's given me a lot to think about.

                    I wonder if there's organizations such as in this movie that we might find allies and ideas about these concepts... anyone else view the movie?

                    Comment


                      #11
                      Maybe Its a Marketing Problem

                      This thread is reminding me that I need to go back and finish that documentary "The Anonymous People". That doc seemed like it was all about legitimizing alcohol as a disease research and coming out as an addict/alcoholic and not being shamed by it. It's given me a lot to think about.

                      I wonder if there's organizations such as in this movie that we might find allies and ideas about these concepts... anyone else view the movie?

                      Comment


                        #12
                        Maybe Its a Marketing Problem

                        By we spirit I meant that there is no organized collective, which Ne also goes on to point out.

                        Comment


                          #13
                          Maybe Its a Marketing Problem

                          bleep;1698158 wrote: By we spirit I meant that there is no organized collective, which Ne also goes on to point out.

                          Thanks bleep and you make a great point.

                          After reading this, I did a search for charitable alcoholism organizations. Absolutely incredible. Only one
                          that is rated by Charity Watch (org):

                          Partnership for Drug-Free Kids - Where Families Find Answers |This site opens up: Partnership for Drug Free Kids
                          CharityWatch Top-Rated Charities

                          There are more top rated charitable sites for Population Planning and Protection of Frogs than for Drugs/Alcoholism. On the Charity Watch site, no where is the word alcoholism mentioned.

                          There is no one central "WE" group that charitably supports solutions to alcoholism -in the USA. However, there is one small charitable organization that just funded $20,000.00 for research using Baclofen. That is it.

                          Comment


                            #14
                            Maybe Its a Marketing Problem

                            spiritwolf333;1698200 wrote: There is no one central "WE" group that charitably supports solutions to alcoholism -in the USA. However, there is one small charitable organization that just funded $20,000.00 for research using Baclofen. That is it.
                            Is this the group?
                            Foundation for Alcoholism Research | An All-Volunteer Public Charity


                            Is this the grant?
                            The Foundation for Alcoholism Research Funds Breakthrough Research | Foundation for Alcoholism Research

                            Here's who's on their board:
                            The Management Team | Foundation for Alcoholism Research


                            Funny thing, I found this group and their interest in baclofen a few years ago. So, I emailed Ms Calder expressing interest in sharing information. Big surprise, I never heard back. A good reason why this quest is so very frustrating.

                            Cass
                            With profound appreciation to Dr Olivier Ameisen for his brilliant insight and courageous determination

                            Comment


                              #15
                              Maybe Its a Marketing Problem

                              Cassander;1698277 wrote: Is this the group?
                              Foundation for Alcoholism Research | An All-Volunteer Public Charity


                              Is this the grant?
                              The Foundation for Alcoholism Research Funds Breakthrough Research | Foundation for Alcoholism Research

                              Here's who's on their board:
                              The Management Team | Foundation for Alcoholism Research


                              Funny thing, I found this group and their interest in baclofen a few years ago. So, I emailed Ms Calder expressing interest in sharing information. Big surprise, I never heard back. A good reason why this quest is so very frustrating.

                              Cass
                              Hi Cass -I think that they are a very-very small organization with great intentions. And now, the fact that they have actually raised $20,000 and donated it towards Baclofen for alcoholism research is a huge step forward.

                              The research that FAR has contributed towards is an extended release form of Baclofen for alcoholism. I also think that I understood Ms. Calder to say that all of their contributed funds were going towards alcohol research but that part of the NIH funds might be going towards nicotine use.

                              For whatever it is worth, there does exist a PRIVATE group that has raised funds for alcoholism research using Baclofen -here in the USA. Yes, it is a very small amount, but it is more than I had ever heard about.

                              Our quest is both frustrating and confusing. One thing is for sure, the alcohol companies and revenues from states are not going to be found funding medications that eradicate the disease of alcoholism.

                              Comment

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