Baclofen Petition

[Otter]

I keep coming back to the problem that whoever I speak to about this issue is either completely ignorant of baclofen or laughs at it.

I found this link to a petition to the White House: https://petitions.whitehouse.gov/

How about starting a petition along the lines of suggesting that government has a duty to the people to cut through all the stupidity which requires a full double blind trial while people die. Even if there is a double blind trial does that mean doctors will prescribe or will they remain as ignorant about alcohol treatment as they are now? French doctors are being encouraged to prescribe by national authorities on the basis of existing science. Does science stop at national borders? Why do French alcoholics get treatment while American alcoholics suffer?

Any thoughts anyone?

[Lo0p]

Baclofen Petition

Add the fact that there is a DBPC trial ongoing at the U of Amsterdam, but there needs to be at least one more (domestic) one before anyone in America will take it seriously. No one will foot the bill for it because Big Pharm is solely profit motivated. The human condition obviously provides much less incentive to them than money. It's a paltry

[BarkerBob]

Baclofen Petition

There is also a study taking place over here in Germany at the Charite Berlin. I was part of that one early 2012, but unfortunately ended up in the placebo arm and decided to rather take the real deal instead of wasting my time. I think they are having a hard time recruiting patients though. They have relatively high standards plus you have to go in there once a week, regular contact with the study nurse etc.

Anyway, problem with petitions like this is that you need quite a lot of people to actually get noticed. I honestly don't think "we" are enough at this point. Definitely would help and petition though, although not being American could make this pointless.

[Otter]

Baclofen Petition

There is also an e-petition site for the UK: Search results - e-petitions

I read a couple of pages and the highest number I saw was for banning automated calls to home numbers. Most of the others were in the "joke" category.

I understand the Amsterdam trial never got off the ground. I don't think a trial is necessary or will help. It is a side issue. So there is a trial result which will, inevitably, show baclofen works. How does some doctor sitting in his office in Boise or Manchester hear about it and what would make him prescribe. Getting a drug which is out of patent through a double blind test does not ensure either that anyone knows about it or that it is prescribed. It is already prescribable legally for alcoholism off licence and any doctor is under a duty to prescribe it if a patient wants it and with the exiting information should prescribe.

The problem is that politicians and the public generally don't see it as acceptable to be "on the side" of alcholics because of the problems caused by people drinking, ie., drinking and driving, violence. It makes sense politically to be hard on drinking, not to help those with a drink problem.

One way to counter this is to look at it form the side of victims. In the UK there has been a program using medications to treat addictions for some years now. The idea is to nip crime in the bud by getting hold of those who offend due to drugs and diverting them into a medical treatment program called "Tough Choices". It avoids people being prosecuted whose minds really are so messed up they cannot, sometimes, be held legally responsible, reduces acqusitive crime to fund addiction, reduces court costs etc etc. Just think if there was a program like that for people with alcohol problems or at least if there was a view in society that maybe someone's best friend, son, daughter, husband, wife might not have been killed by a drink driver who had a long standing drink problem if only he had been able to tackle his drink problem with a cheap prescription drug. Here are the links to the drugs programs:
Drug Interventions Programme - Wikipedia, the free encyclopedia
http://www.ohrn.nhs.uk/resource/poli...ficeDrugs2.pdf

I was involved in the launch of this particular program back in the 90's when I was a drugs lawyer and was asked to advise clients that they could avoid going to court if they became involved in the program. Most took it up and the heroin trade, and my business, took a big hit.

One might be tempted to say that this wouldn't apply to alcoholics etc but I have had clients who have had drink problems and have been picked up by the police with obvious problems. I had one on the phone from a police station in tears. I had represented him earlier and he went to prison, no treatment. He came out, tried to medicate his "issues" to the point he killed a woman while drunk. I had another, same thing, killed his girlfriend and a couple of other kids in a car; drove it into a telephone pole. Both were in court before, known to the police, had obvious mental health issues, drank... That is just the driving side. Don't forget about the huge number of violence cases involving alcohol and mainly repeat offenders. It is an epidemic. It's just easier to blame someone and think prosecuting solves the issue. Then you get to sentencing someone like this and they say they have a drink problem which made them act out of character so there is nothing for them. If it is not serious enough for prison there is nothing for them so most just walk away from it with little or no punishment and no treatment at all.

Just a thought.

[Alcoholic]

Baclofen Petition

I know baclofen has been studied and reported to be helpful and the studies are out there... But the info isn't getting to most docs because there numerous cancer, blood pressure, diabetes meds that come out monthly, along w numerous new warnings/side effects on existing meds that they have to learn about... And there are new off label use of multiple meds for multiple illnesses... Not to mention fear of over - abundance of lawsuits in United States.

How a GP can remember and grasp all that info is beyond me. Imagine doing that and have a family ! a friend of mine who is a family doctor just got sued for something I think she had probably no control over, just because a patient w history if high blood pressure saw her once and sued her along w a bunch of other doctors after he had a stroke...

[Ne/Neva Eva]

Baclofen Petition

When doing some research for a paper last year I came across some interesting information.
The vast majority of medications we use on a regular basis do not go through the kind of testing we assume(d) needed to be done with baclofen before it gets noticed. Not only is it not necessary, it's never going to happen. More to the point, though, is that the very anecdotal evidence we experience here is what will get it noticed. That and small scale studies that have little scientific impact, but can prove efficacy.

The vast majority of clinicians in addiction and psychiatric medicine get their information from two places. The first is word of mouth from others in the field. The second is from conferences. If you want to have an impact, get invited to some conferences. Also, talking to docs about it is an obvious choice.

There is legislation in several states that insists that treatment programs have to use evidence based medicine, and show evidence that it works. For the first time ever. These are only the ones that receive state and federal funding, however. The private ones can just keep collecting money and keeping people sick/making them sicker.

Portugal enacted legislation that has had a profound and extremely positive influence on several fronts. They legalized the use of drugs and repealed the laws related to public intoxication. They used the money that would have gone toward police/incarceration etc toward medical treatment programs. Recidivism is down. Drug and alcohol related crimes are down. People are getting help. There isn't an increase in drug use, or public intoxication. It's being studied by other nations. Vancouver and Portland, Oregon are also changing things up. (Fascinating what happened with a harm reduction clinic in Vancouver. Someone sued, it went to the supreme court, and the court ruled in favor of the harm reduction clinic. This clinic allows people to use drugs on the property. Provides them with needles, etc. All for the purpose of reaching out, and keeping people safe. Remarkable story.)

It all still sucks, but at least it's changing. Sort of. uch:

[Otter]

Baclofen Petition

I find it frustrating. I am amazed how poor dissemination of information is among doctors. (I have also found, to my shock, that apart from the ones now using this medication, the rest are a bunch of complete jerks). I remember some years ago there was a huge movement by Aids victims to push for the use of foreign drugs which resulted in legislation allowing for importation of a three month supply of drugs available abroad. I wonder who they exerted pressure on?

I have been watching a lot of Youtubes of Sarah Palin being insulted by some guy on the Young Turk network. He plays a video of Palin saying Obama wanted to take the US back to before the US civil war and then he does this "how stupid is she" routine. I feel the same way about doctors now. They say there is no cure for alcoholism, no treatment, that it is a train wreck, all that sh.t. They make you run around from pillar to post trying to get help all the while undermining you by failing to do anything at all and screwing up any attempt to get help.

Then along comes a treatment and they ignore it, laugh, make excuses, don't bother to look into it, are too stupid to undertand the science behind it, don't care, won't prescribe because they are afraid (wooooo!), you name it they will use it as an excuse... becuase, fundamentally, they don't give a rats arse about their patients, are only in it for the money, are the most hypicritical bunch of worthless, one short of a human being wastes of space going...generally speaking of course.

Yes, Virginia, there is a cure for alcoholism, but don't expect your doctor to know about it because he is likely a "wanker" as the English say.

[Otter]

Baclofen Petition

I fell for this BS promulgated by the medical profession that alcoholism cannot be dealt with until the "underlying" condition is diagnosed but that cannot be done until the patient stops drinking. So, it is impossible. We pay for that sh.t advice.

So, I took it upon myself to visit the local office of "Mind" since no doctor would/could help. Mind is a charity devoted to helping people with mental health problems. I found the office, on the second floor of an old building, went in and there was a woman sitting at a desk. I introduced myself and told her about my problems and she said she was just a volunteer there to answer the phone. The only other thing in the room was a rack of pamplets. She directed me to one which had details of the head office of Mind and suggested I give it a call. I phoned from my mobile. I got through to a volunteer person answering the phones who said I should speak to someone locally anad gave me the phone number of the woman in the office I was standing in.

That to me sums up the present attitude towards alcohol treatment. Farsical.

I think the problem in the UK is that doctors only do a year or so of training. They get their "A" levels in English, Maths and Basketweaving and go straight to Medical School. True. No pre med in the UK. You can start Medical School here at 18. In year one they are taught which is their arse and which is their elbow and in year two they go on a ward. Then back to Medical school in year three to drink their way to graduation. One doctor I spoke to about baclofen suggested some neural programming crap that he subscribed to which involves tieing wooden planks to your feet. I changed doctors the next day.

[Otter]

Baclofen Petition

Did I mention I don't like doctors?

[Ne/Neva Eva]

Baclofen Petition

The thing I found most alarming when I was doing this research is the reluctance of the addiction community to even consider medication. The reason? According to several papers I read it's because the vast majority of addiction community counselors, the ones on the front line, are usually recovery-graduates themselves. Guess how they got sober? The grace of God and the 12 steps of AA.

It's not the doctors, or not just the doctors, Otter. It's the community that perpetuates the stereotype that we are weak-willed, morally bankrupt and in need of a spiritual solution. (The spiritual solution language is actually used by the American Society of Addiction Medicine.

Other factors that can contribute to the appearance of addiction, leading to its characteristic bio-psycho-socio-spiritual manifestations, include:

...
Distortion in meaning, purpose and values that guide attitudes, thinking and behavior;

Distortions in a person’s connection with self, with others and with the transcendent (referred to as God by many, the Higher Power by 12-steps groups, or higher consciousness by others);

Definition of Addiction

I'm fairly certain there isn't another disease in which the main representative body, the one responsible for training medical and support personnel in the treatment of a disease (which is how it defines addiction) includes a diagnosis that has anything to do with spiritual connection.

Bill W was an incredible man, and I love the program, but it really has screwed up the scientific and medical treatment of this disease.

It's got to start at the level where people are treating each other, Otter. In my humble opinion. Alcoholics treat alcoholics. It's the most amazing network in the world, represented almost everywhere regardless of borders. Changing attitudes there will affect the world. And we are powerful and powerfully united.

just sayin'

[Ne/Neva Eva]

Baclofen Petition

And for goodness sakes, can't you find anything better to watch on Youtube? Holy cow, I am so glad to be rid of that woman. I can't imagine watching another minute of her or about her!

Of course, there is plenty to watch and be annoyed/disgusted by at the moment. Ed and I have been talking about which Scandinavian country we are most likely to be able to get into. I can't imagine living without a super-sized fridge and 1600 square feet though. Perhaps a banana republic?

(And please don't take that the wrong way, Americans. I love living here. I also like making fun of us. Chillax. )

[JackieClaire]

Baclofen Petition

Otter;1434974 wrote:
I think the problem in the UK is that doctors only do a year or so of training. They get their "A" levels in English, Maths and Basketweaving and go straight to Medical School. True. No pre med in the UK. You can start Medical School here at 18. In year one they are taught which is their arse and which is their elbow and in year two they go on a ward. Then back to Medical school in year three to drink their way to graduation. One doctor I spoke to about baclofen suggested some neural programming crap that he subscribed to which involves tieing wooden planks to your feet. I changed doctors the next day.

Sorry to interrupt but sometimes Otter you make me so angry. My next door neighbour's daughter and 2 cousins are doctors, the first a trainee surgeon,one a surgeon and one a GP. The training you describe there is nothing but a load of absolute bull crap. They are allowed on the wards in year 3 in their bright new white coats, with their little book of meds in their pockets all shiny faced and keen but they are well supervised. Good grief they do at least 5 years at University, then they do their rotation. Then more training and trying to keep up to date with new medicines all the time.

For goodness sake man get your facts right before you go slagging off a profession that may not work the way you want, but I'll tell you something I wouldn't be without the NHS in England.
How much would a heart operation on a 5 year old child in the USA cost, plus ICU, plus nursing and aftercare. Cost us nothing when my daughter was 5 and had hole in the heart repaired.
Yes alcoholism is a terrible disease but who will pay for the extra training, who will pay for the extra nursing, who will pay for the after care. The tax we pay to run the NHS is crippling us to start with.

Oh and another thing I'm one of those volunteers that you think so little of. I volunteer for a local drug and alcohol programme. I am at the beginning of my training to become a fully fledged alcohol worker. We were helped by these services and do something to give back. We do not rant and rail against various governments round the world to change their systems because I and those I work with believe it with education and knowledge things will and can change. Not today, not tomorrow, with drugs or with out drugs. But change will come.

Treatment cannot and hopefully will never be forced on a patient against their will. If more alcoholics are willing to ask for treatment instead of hiding it like dirty secret then change will happen more rapidly.

[Otter]

Baclofen Petition

First of all, it was a joke. (But you prove my point. Third year is it. You have to do a full four year degree in science just to get into medical school in North America)

Secondly, go and ask these bright sparks how to get baclofen treatment rolled out.

Thirdly, as far as my experience with baclofen is concerned, my experience is as I have described.

Finally, I honestly don't give a monkeys what you think. I have experience of the educational systems in North America and in here in the UK. The UK is a quantum leap behind the US and Canada. Go to Toronto for instance and you will find beautiful, clean hospitals, lots of them all within half a mile in the center of the city right next to a University which is ranked second in the world in terms of research. Hardly the grotty campus style dumps of hospitals you find here in which my grandmother died from neglect and my father died from MRSA.

So, finally, save your righteous indignation and put me on ignore if you don't like what I say but don't spout nonsense about your neighbours to me. I am "so" not interested.

Your attittude is typical. People die from this. That, you may be surprised to know, makes their family upset. But your response is to insult the family. Oh yes, we might get change through education, as you say but 2 million people die every year from this illness and your post suggests nothing to help them.

[JackieClaire]

Baclofen Petition

Otter;1434994 wrote: First of all, it was a joke. (But you prove my point. Third year is it. You have to do a full four year degree in science just to get into medical school in North America)

Secondly, go and ask these bright sparks how to get baclofen treatment rolled out.

Thirdly, as far as my experience with baclofen is concerned, my experience is as I have described.

Finally, I honestly don't give a monkeys what you think. I have experience of the educational systems in North America and in here in the UK. The UK is a quantum leap behind the US and Canada. Go to Toronto for instance and you will find beautiful, clean hospitals, lots of them all within half a mile in the center of the city right next to a University which is ranked second in the world in terms of research. Hardly the grotty campus style dumps of hospitals you find here in which my grandmother died from neglect and my father died from MRSA.

So, finally, save your righteous indignation and put me on ignore if you don't like what I say but don't spout nonsense about your neighbours to me. I am "so" not interested.

Just who do you think you are?

So if it's so bloody lovely in Toronto and it so behind in the UK why not bugger off back there.

[JackieClaire]

Baclofen Petition

Otter;1434994 wrote: First of all, it was a joke. (But you prove my point. Third year is it. You have to do a full four year degree in science just to get into medical school in North America)

They're called A levels here, the UK education is streets ahead, hun.