Maybe Its a Marketing Problem

[Cassander]

Maybe Its a Marketing Problem

Interestingly, I was listening to Diane Rehm on NPR the other morning and she and her guest, who writes and speaks extensively about Alzheimers, were comparing the extrordinary marketing success of the Ice Bucket Challenge to the obstacles in raising money for, and finding a cure for, Alzheimers, from which many more people suffer.

So I did some more research. An estimated 5.2 million Americans have Alzheimer's disease. More than 500,000 seniors die each year because they have Alzheimer's. If Alzheimer's was eliminated, half a million lives would be saved a year. Alzheimer's is officially the 6th leading cause of death in the United States and the 5th leading cause of death for those aged 65 and older. In 2014, the direct costs to American society of caring for those with Alzheimer's will total an estimated $214 billion, including $150 billion in costs to Medicare and Medicaid.

While more people will die this year from Alzheimers than alcoholism, the number of sufferers is comparable as is the cost to the nation. Both are baffling diseases of the brain. Historically, neither has had a medical cure.

The difference, it seems to me, is that we have a promising medical approach in baclofen, and nothing for ALS or Alzheimers, and yet there is no widespread financial support for the additional testing necessary to move baclofen into the mainstream.

Curious.

[spiritwolf333]

Maybe Its a Marketing Problem

Cass -regarding your previous post:

$$$$$ and ....

First, it is my opinion that curing many diseases right now would bring economic calamity to not only the USA economy but to that of the world. As an example, I will later post just the revenues received for alcohol sales -by state governments.

Cass, I also look at other diseases (cancer) that have some cures but are not brought to front of the stage. I also look at the fact that we have mapped the entire human genome, and as such:

WE CAN BUILD A HUMAN -CREATE A HUMAN BEING FROM THE INFORMATION THAT WE NOW HAVE. If we can build a human being -as we now have the 'directions' to do so, then we have the information necessary to 'un-build' certain parts -to effectively change and reverse certain conditions. (Right now, today, we can re-create (build) a Cassander -from scratch -lol-but very true). We can now (and have done), grow a human ear in a petri dish (non-organically). We have a spacecraft 40 million miles away from earth sending back information relative to organic sampling. And yet, and yet, we can not solve some of the most fatal diseases?

"Completed in April 2003, the HGP gave us the ability, for the first time, to read nature's complete genetic blueprint for building a human being." (NIH Fact Sheets - Human Genome Project)
"In 1990, the National Institutes of Health (NIH) and the Department of Energy joined with international partners in a quest to sequence all 3 billion letters, or base pairs, in the human genome, which is the complete set of DNA in the human body. This concerted, public effort was the Human Genome Project."

If each of us can play a small-minuscule part in sharing information regarding medications minimizing or eliminating alcoholism, then perhaps our individual and combined efforts are worth the energy. We now have the information necessary to cure or reverse many diseases -but....?

[spiritwolf333]

Maybe Its a Marketing Problem

Cass -Yes, I believe you and Otter are correct -it is a marketing problem.

First and foremost, who is the market?

[Cassander]

Maybe Its a Marketing Problem

spiritwolf333;1699435 wrote: Cass -Yes, I believe you and Otter are correct -it is a marketing problem. First and foremost, who is the market?

Aww, come on, Spirit. Don't make us think. We could just mindlessly spout on if we don't have to think...Right?

[spiritwolf333]

Maybe Its a Marketing Problem

Cassander;1699475 wrote: Aww, come on, Spirit. Don't make us think. We could just mindlessly spout on if we don't have to think...Right?

Cass -I often times feel lost as a 'fish out of water'.

The point you make reminds me of a cartoon that I once saw that shows a machine gun salesman trying to sell his newly discovered machine gun to a group of folks using bow and arrows to fend off their enemy. The person he was trying to sell the machine gun looked at the salesman and said "don't bother me now, I am trying to fight a battle".
In many ways, I see similarities with us alcoholics and medications for alcoholism and 12 step programs. Here is why:

First, most likely, if you are in a 12 step program, you are battling alcoholism and/or you are trying to help someone else battle alcoholism. The difficulty in selling anything to this particular group is the fact that the teacher(sponsor) most likely has remained alcohol free for a period of time without using medication and so medication is not valid option. Although many of the underlying physical/mental conditions for using alcohol still exist in these persons, they continue to white knuckle their way. Not much sales of medication in this arena.

Second, the non 12 stepper group. Of course it is only my opinion, but the majority of alcoholics-alcoholic abusers fall into this category and these are the people who do not acknowledge nor accept that they are chemically addicted (or have a problem with firewater). After all, these people are ingesting a chemical that creates an illusion (re-wiring in the brain) that tells them that there exist no problem. To try and sell a medical cure for alcoholism to this group is analogous to selling ice to someone in the Artic.

Now, here are the folks that I believe are the groups that the marketing of medications for alcoholism might most effectively be directed towards:

(1) One of the most desperate individuals in the world -the alcoholic who acknowledges that he/she has a huge problem and that life is no longer meaningful with or without alcohol. This was me and this is the easy sell. If this person is somehow able to gain access to information regarding medication for alcoholism, no selling to this person will be required.

(2) The alcoholic or abuser that will easily acknowledge to themselves they have a mental challenge regarding alcohol. This particular group of people have not reached a point of desperation that requires them to stop drinking or die. They are typically the ones who know they have a huge problem but are not about to admit it anyone. However, if they hear about a medication that might help them quit drinking (or at least reduce), they will come running by the droves. Perhaps this particular group is much like the majority of the Viagra group?

(3) The Families: Or at least some of the families. This may in fact be the majority group to sell medications for alcoholism (addictions) to. Yes, some family members still consider the alcoholic/addict to be morally misbehaving and so there is but one answer. But there are many-many family members of the addicted that don't really care why someone is addicted. They only want that family member to survive and find happiness. On occasion, I have had the opportunity to present the Baclofen option to some family members of the addicted and they proceeded from there.

(4) Doctors -a smaller market, but a great area to target. It is my opinion that most GPs would prescribe off-label medications to their patients if they knew their patients had an addiction problem. Alcoholism truly is a closet disease. Its a don't hear-don't tell problem.
Once GPs become more educated about medical solutions to alcoholism, I think that we will see the world of alcohol destruction change. The shame diseases kill too many.

Thanks for the whiteboard.

[Cassander]

Maybe Its a Marketing Problem

Hello Spirit

I do wish you would clarify your position on baclofen once and for all so that the shouting would die down. If someone asked me, I would say that (1) you are a good guy, that you mean well and you are most definitely not a troll, (2) you were a late stage, pretty desperate, afraid you had run out of chances drunk, (3) you found baclofen and it worked for you and you are extraordinarily grateful, (4) you believe baclofen 'works', but you are aware that the SEs of baclofen are (or seem to be) intolerable for some (especially if they keep drinking while titrating up), and (5) while you agree that the discovery of baclofen is a huge discovery for which Dr Amiesen deserves huge credit, you wish that the governments and the pharma companies would more aggressively and more publicly search for additional compounds which do what baclofen seems to do, but without the SEs. Is this about right?

As far as who is the market for the baclofen message, I'm as frustrated as anybody. I came here over three years ago (I can't remember whether I had already read OA's book or not) and as I watched baclofen miraculously stem my son's binge drinking and read the success stories of others I quickly became a believer. Since then I have shared the frustration of virtually everybody who understands what baclofen has shown it can do for hundreds, if not thousands, of alcoholics but somehow has not become mainstream. I guess if I just lead with my heart I would say that baclofen needs a rich altruistic patron who will finance the double-blind study in the US that is necessary for mainstream approval. I had thought the cost of a study is only about $1 million, but even if its a few million, its a pittance compared to the cost to alcoholics and their families and victims of alcoholism and the budgets of...pick any one of the following: (1) the big beer and booze companies, (2) the National Institute of Health, (3) any one of ten or twenty Big Pharma companies, (4) the American Medical Association, (5) any number of automobile and health insurance companies which are currently paying out for alcohol-related claims, (6) Mothers Against Drunk Driving, and I have probably only scratched the surface.

Like you and some others I had high hopes that George Koob would initiate baclofen legitimization studies at the National Institute on Alcohol Abuse and Alcoholism when he recently became director. He is on record as having praised the work done by Olivier Ameisen and his professional background acknowledges the promise in medical treatment of alcoholism. The fact that he has made no public statements (to my knowledge) on the subject is mystifying and hugely disheartening. On my bleak-outlook days I simply wonder if there isn't an enormous conspiracy, because the whole thing makes no sense.

With best wishes to all who continue to come this little corner of the Internet looking for information and support. Baclofen works.

Cassander

[spiritwolf333]

Maybe Its a Marketing Problem

Cassander;1699696 wrote: Hello Spirit

I do wish you would clarify your position on baclofen once and for all so that the shouting would die down. If someone asked me, I would say that (1) you are a good guy, that you mean well and you are most definitely not a troll, (2) you were a late stage, pretty desperate, afraid you had run out of chances drunk, (3) you found baclofen and it worked for you and you are extraordinarily grateful, (4) you believe baclofen 'works', but you are aware that the SEs of baclofen are (or seem to be) intolerable for some (especially if they keep drinking while titrating up), and (5) while you agree that the discovery of baclofen is a huge discovery for which Dr Amiesen deserves huge credit, you wish that the governments and the pharma companies would more aggressively and more publicly search for additional compounds which do what baclofen seems to do, but without the SEs. Is this about right?

Baclofen works.

Cassander

Hi Cass - please allow me to thank you for your enumerated list above. Each item in your list is true and correct (except perhaps the "good guy" part -though I try to be).

For the record, I hope that anyone taking the time to read this thread and post will understand and believe my following statement:

BACLOFEN SAVED MY LIFE. WHY? I WAS A FINAL STAGE ALCOHOLIC WITH NO HOPE AND NO ANSWER. I painstakingly searched the internet (only in the mornings when I was somewhat lucid) to find a medical answer to my near term death sentence. I will always be grateful for finding the Olivier Ameisen - Diane Sawyer video clip regarding Baclofen. Therein, I found hope for the first time and was willing to do whatever was necessary to try Baclofen. I did try Baclofen under the guidance of a medical doctor and found total and complete relief from alcoholism about 60 days later. Side effects continued after the 60 days but for someone who had just escaped death, side effects were irrelevant. BACLOFEN WAS AND IS MY ANSWER TO ALCOHOLISM.

Cass - I was (hope I still am) a very knowledgeable research person. My dedication to finding an answer to my alcoholism stemmed from my DESPERATION to somehow find a way to keep on living. My research to find Baclofen for alcoholism too many hours and dedication to finding a solution. As stated earlier, I was only able to function in the early morning hours so I was very limited. The point that I am trying to make is that an alcoholic should be able to very easily search the web and come up with alternatives to solving their alcoholism. Not only are most alcoholics ashamed of their disease, they are also not able to function very well when it comes to computers and "searches". It is my hope that a few simple alcoholism key words typed will quickly lead one to medications for alcoholism. The key word Baclofen has a very huge problem for us drunks to remember, spell, or even think about.

In my opinion, the most important thing that any of us can do at this point in the medication for alcoholism journey is to continuously point out information regarding medication that works for curing alcoholism. I often wonder why I continue to post on this site -only to get ridiculed and slammed for expressing ideas and opinions. I sometimes think that it is my inability to communicate my thoughts in a way that does not offend or that my thoughts are not always coherent. Regardless, I guess my real reason to keep posting is in hopes that someone like me will come across this website and relate to what I am saying and finally get help.

Cass -I would like to finally offer the following: As a near death alcoholic/drunk, the loneliness and lack of any hope are the end results of this disease. Too often, these results end in the death of the afflicted. Out individual and combined efforts to share and spread information regarding medications for alcoholism is critical. Furthermore, if controversial posts and threads help to get the word out, then the more the merrier.

For now, it is up to us to get the word out about medications for alcoholism. The word will not truly get out any other way.

[Molly78]

Maybe Its a Marketing Problem

I've just come back to MWO, having abandoned it for a while out of frustration, the personal attacks, individual agendas & circular arguments are real time wasters. But having returned, this marketing problem is something close to my heart. I think alcoholism is still not widely accepted as a disease, certainly not by GP's, & not by most psychiatrists, whatever their "official" line is. I conclude this from having had several years of access to a psychiatrists forum, where the discussions about alcoholism by general psychiatrists are judgemental & patronising. Treating alcoholics is regarded as almost a waste of time. They use the drugs marketed to them by Big Pharma - whilst acknowledging that the success of these treatments is limited, what comes across is that failure to recover is ultimately the addicts own fault. There are addiction specialists in tertiary centres who have a better understanding & are starting to be interested in baclofen, but accessing them is via your local psychiatry team who would only refer you if you were at death's door.

GP's in the UK have no interest at all in alcoholics. Those they recognise as alcoholic make the waiting room smell & waste the GP's time. Professional people who hold down a job & look after their families cannot by definition be alcoholic, many GP's themselves are heavy drinkers & in denial.

So. We can't even market ourselves to the medical profession - how on earth can we expect the general population to show sympathy & raise funds?

If spiritwolf does want a "treatment like baclofen but without the SE's then I'm afraid thta's not going tpo happen - ALL drug treatments have SE's. If they have a therapeutic effect, they will have side effects. This sort of unrealistic expectation is why this website is cluttered up with stuff about homeopathy & meditation. They don't have SE's, nor do they work.

[spiritwolf333]

Maybe Its a Marketing Problem

Hi Molly -glad you are back.

Most people with mental illnesses do recognize nor acknowledge that they have a mental illness, and therefore are very difficult to both recognize and/or treat. If the subjects of the disease are unable to recognize they a disease, then I imagine it is very difficult for others to recognize or acknowledge the same.

You are right; it is very difficult to market a solution to people who do not believe they have a problem to begin with.

SW and Side effects; perhaps I am saying medications with less harsher side effects? My former medication, alcohol, had huge negative side effects and I somehow endured those up until I reached a certain point.

To blast homeopathy and meditation as not working is somewhat unhelpful. Even if you have a medications that address the mental and physical cravings, most alcoholics still need the ability to access behavioral modification issues. I continue to at least try and have an open mind to all things that can help dying alcoholics -no matter how minimal the help may appear to be.

[Molly78]

Maybe Its a Marketing Problem

Any drug treatment is a balance between beneficial effects & SE. To waste time & money searching for something that suits everyone when we already have something that WORKS is just criminal. It won't help our marketing image to be saying "Well we have a cure but boo-hoo the SE make us feel nasty so cough up the cash for a drug we like better". Some of the cancer treatments have really appalling SE but people just get on with it. Something better might turn up eventually, but to get baclofen licensed as a "treatment" that works would be a great acknowledgement of alcoholism as a disease. The that would spur further research. This should be our priority. Encouraging Big Pharma to hunt for something new is self-defeating.

[spiritwolf333]

Maybe Its a Marketing Problem

Fortunately, for all suffering alcoholics, big Pharma is getting involved. Several are working on modifications to Baclofen that will allow them to obtain patents and then proceed with huge marketing campaigns that promote Baclofen as a medication for the treatment of alcoholism. In order to market Baclofen to the majority, You have to have companies that have a vested and profitable interest in doing so. Sure, these companies will make massive amounts of money -right? Why should this be a problem if they actually get the word out in huge way to those that suffer from alcoholism? And, I think a few us can at least agree that, Baclofen, in its current state, is and extremely challenging medication. (And so are many cancer medications, but those dying from cancer are able to understand that they have a disease that they are dying from -not so for alcoholics and the others that are mentally ill). Just my opinion and thoughts -of course.

[Molly78]

Maybe Its a Marketing Problem

And while we wait for them to get the patent that will allow them to make money, alcoholics are dying. Alcoholism IS a disease which people die from - 85,000 a year according to Cassander's original post.

[Cassander]

Maybe Its a Marketing Problem

Yes.

And welcome back, Molly. You and Spirit are both right. As for me, I've got my hopes up that a conclusive positive result from the double blind study nearing completion in France will be a big step forward in legitimizing baclofen for alcoholism.

[Molly78]

Maybe Its a Marketing Problem

I am also hopeful about the French study - they are already using baclofen widely in France. If the study shows clear benefit, or even benefit equivalent to the currently licensed (expensive) drugs, then we are away! We won't need Big Pharma to do anything other than pootle about developing (an expensive) extended release preparation. These slow release formulations have made the drug companies a fortune with ADHD treatments, so they won't need to waste time looking for "new" treatments for alcoholism.

Spirit - maybe a slow release preparation would offset some of the SE which you find unacceptable? A steady blood level of baclofen would eliminate the peaks & troughs of the 4 or 5x a day dosing.

[Molly78]

Maybe Its a Marketing Problem

I've just seen the "Commemoration of the ones we've lost" thread. It brings home the fact that alcoholism is a fatal disease. Many of us posting here are probably thinking like me that we might not be alive now if it wasn't for baclofen.