Merck (MSD) has now responded to patient questions on the Parkinson's UK forum. There is a further opportunity to ask questions, but the window is small, questions need to be in by Monday.

If you are from the UK, and are affected, or maybe affected by this shortage which is set to continue till 2011 this is another opportunity to ask Merck why the shortage occurred.

To read the Q & A's go to:

http://www.parkinsons.org.uk/pdsforum/

Scroll down to the Q & A's link at the bottom.

Be sure also to read the sticky from PUK at the top of the page.

Lindy

Merck's responses are a repetition of the same press release they have sent out all year, around the world, containing zero information, with a Hallmark card saying "Hope you get well." It's all too bizarre to even contemplate. in any other business, they would simply lose the contract, for incompetence, at the very least.

Merckisms; Merckist: noun and adjective describing unintentionally hilarious attempt to avoid telling the truth by reciting worn-out clichés and perfectly meaningless catch-phrases, apparently assuming that the readers are mentally retarded and will be unable to differentiate between pabulum and beefsteak; for example:

“Instead of answering the question about the war in Iraq, President Bush uttered a series of hollow Merckisms…”

OR, …”British Petroleum launched a Merckist PR campaign, claming that oil in the waters of the Gulf of Mexico provides swimmers with an extra protection against the rays of the sun; a benefit allocated free of charge by BP”

The origin of the words “Merckism” and “Merckist” was in Merck’s responses to questions from PWP in the U.K., such as:

Merckism:…”a worrying situation for any patient or carer concerned that they will not be able to access the medication….”

Ah yes. Someone poisons the well at the only oasis in the desert you are crossing on foot? Worrying situation. Pushed out the door of an airplane? A worrying situation. Yes, suppliers decide to shut down production of the only drug that allows you to function, and the reason why production has been shut down in multiple companies in multiple countries is a top secret shared at the top, but never, never “cascaded” down to the peasant’s level, er, we mean the patient’s level. A very worrysome situation.

Merckism:…”With regards to the global situation, a number of countries are affected, albeit to different extents, depending on a number of factors…”

Hahahaha. That’s a corker of a Merckism…. A number of countries (Merck deals in 81 countries) are affected, albeit to different extents (some get all they need, some get 50%, some get 80%, some get none at all… definitely different extents) and we have been asking all year to know the criteria for this triage; to know which countries are deprived of a pill everytime I swallow one; and so… Canada had none but then got all it needed; Australia was to get 20 to 50% in the first wave of letters Merck sent to every doctor and every pharmacist; then the next wave of letters dropped that to zero….. and then of course Spain got 100% and production re-started within a matter of days after a small group of Parkies requested that their government enforce the laws and press criminal charges;.. and then another wave of letters went out in the U.K., about the shortage getting apparently worse there, while supplies of the drug were diverted to Spain from other European countries….

And so we got that fabulous gem of a Merckism: ..” a number of countries are affected, albeit to different extents, depending on a number of factors”

Hahaha. A perfect Merckism - you could say it about anything. Fleas: ”a number of puppy dogs are affected, albeit to different extents, depending on a number of factors.” Copy that down and use it in any circumstance. It will become a classic Merckism; the perfect example of bafflegab – words strung together, completely empty of content, the speaker believing that he must be addressing severely mentally retarded people, who won’t talk back. Your drugs are no longer produced…. Because of a number of factors….to different extents. Being Parkies, we are very accustomed to being treated like idiots. One factory was closed 2 years before the new one could open. Good reasons to do that? We are not allowed to know. And yet we are the reason the drug is produced at all. How does it follow, that the impact on us is not even a factor in the plans of those who seem to think they own the disease.

Merkism:…”The best thing to do in this situation is to consult your husband's doctor to discuss if an alternative generic treatment…”

Ah yes, a few million Parkies in the world – get an appointment with the clinic and find something other than Merck’s sinemet; there must be an alternative that the patients and doctors can turn to when the drug company decides to shut down a factory for undisclosed reasons. Hey, you don’t like the service you get from Merck? Just call up your doctor and together the two of you may come up with an alternative treatment. Ever try acupuncture? Just exactly what do you expect Merck to do? Provide sinemet to people just because some neuro wrote a prescription? Hey, we are Pharma. We decide. You remain silent.

Merck:…”best to inform doctors and pharmacists of the supply situation, to enable them to communicate this to any patients affected. We are conscious however that, in some instances, this information cascade has not been effective. …. the company has been actively communicating since the issue arose at the end of 2009, however, as I have already mentioned, it is clear that our messages were not being cascaded to all patients…”

AH, you see, the only customer for this drug is the patients. And, unfortunately, the information just does not seem to cascade from the people on the top down to the patients at the bottom. Merck was trying hard to communicate since 2009, but no information seemed to cascade out of the private boardrooms where these decisions are constantly made.

Merckism: ..”quickly put into place an allocation system to optimise available supply…”
What are the criteria, gentlemen. And who decides? Allocation system. Optimise supply to…… is it true Kenya got none? Is it true Spain got all? Why did Australia drop from half supply to zero… ahhh, it’s the allocation system. People who may live or die based the allocation system have no right to know the workings of the allocation system. It’s proprietary, you see. It belongs to the industry that grew up around our disease, and where the contempt towards us is so deeply rooted that even when a national organisation representing Parkies asks some vital questions, they get Monty Python answers. The allocation system takes care of the rest.
But this has improved the world’s vocabulary. To Merck; Merkism; Merckist. They may have contributed to impoverishing our spirits, but they have contributed to our vocabulary. At least we got that out of it

By using another company turned verb, i'm going to 'google' merckist activities.

it stinks and they really don't know what patients are capable of doing. apply pressure, do not stop,

It is absolutely true that there is nothing new in the answers that have been given, it is a brick wall of corporate absolution.

There are people out there who do not know what has hit them, struggling with changes that have been made by people who have no idea about the lives we lead, behind the everyday face that we present to the world, so that we can hold together some semblance of normality.

If anyone is looking at this out there, I was put on a generic once, it didn't work for me, my body just did not absorb it. It was like regressing to what I was before I was medicated, but worse. I don't know what it was because it came in a white plastic bottle dispensed at a pharmacy and didn't do the same thing as the little yellow tablets I took before and have taken ever since.

Generics work well for some people, not others, just like all parkinsons medications work for some and not others. The doctors know this, the scientists know this, it is part and parcel of Parkinson's, and balancing medications to get the best quality of life with THIS chronic degenerative condition takes time, sometimes big chunks of it.

It is now down to being in a corporate lottery. Do you get it, or don't you? At the moment I am winning, just about, but I know people who aren't, people who feel desperate.

But that is of no concern to people who have the power to do this. They say go to your doctor and get something different....

Mid-2011 is a long time. A year out of someones life is a long time. Especially if they are not feeling too good because the medication that works for them is simply not there, and the ones they now get don't hit the right spot. In the US Mylan makes a good substitute for controlled release tablets.
Over here there is not an equivalent. It would be good if it was a simple thing, just switch to something else and the problem will go away. But it is not that simple...... and nobody knows what is happening when patients are switched, how they fare, how much they actually tell their doctors, and how much they silently endure. Another lottery.

If this were insulin there would be an outcry.
If it was statins you would get millions of frightened people.
If it was a cancer drug the philanthropists would be out there
rescuing individuals with appealing stories. Well one would hope so......
If you took aspirin away it would make headlines.

ALL people deserve the treatments that work for them.
That includes people with Parkinson's.
WHY are parkinsons medications not listed as essential medications.
They are essential to us.

But there is no big profile out there in the world, we are talking to ourselves and a corporate wall.

This is getting hardly any attention, except the publicity generated by a patient.

People just want ordinary open answers to questions like what happened, why did it happen, what are MSD going to do about it. They have been making this drug for YEARS. They know how to do it. So WHAT happened, why can't they make it now, why do they not answer? They have made it so long that the name sinemet is almost synonymous with levodopa/carbidopa.....

It's a notoriously closed industry, perhaps people think their medications are mysteriously conjured up out of nothing. There is a chain of supply, there are raw materials, there are places that produce them. And there are people who know why this is happening.

This drug is not listed on their website nowadays, though there is a notice that says it is in short supply, they are Merck & Co in the US, Merck Sharp & Dohme (MSD) most everywhere else.

Lindy,
That is a heart-felt, truthful and powerful description of what is going on. That is better than anything anyone else has written about this, myself included, and the denizens of this site should pay attention to it and forward it to everyone in their list of e-mail addresses.
This is a big one, on many different levels. Merck is trying to prove that they can get away with anything, as Amgen demonstrated.
To Americans, they may feel they have no dog in this fight, but they do. Merck's head office is in New Jersey, for one thing, so America is dragged into this swamp by Merck. But, more importantly, Pharma is on a learning curve around the world; they are learning that they can play one country against another, and there is no government that is willing to impose law and order on them.
You don't get millions of people addicted to a brain-altering drug and then pull the plug on them for secret reasons, without even taking Parkies into the equation of the secret decision for secret reasons. And then proclaim that the information failed to cascade down to the peasants, when the problem is that the information failed to tsunami from the peasants to the boardroom of a billionaire drug company that shut down production of a vital drug for two years because they just woke up one morning and felt like it.

Has this information cascaded from the street back up to the boardroom of Merck?
Google as follows: buy sinemet

Few of those sites existed before Merck declared a world-wide shortage. And no one, except Merck, has ever said that there is a world-wide shortage.
The drugs are there. You just have to pay black market prices, that's all, and risk your mental and physical health, as some of these internet sites are probably selling lower quality drugs, or outright counterfeit drugs. But this is not a problem in countries receiving their full ration from the over-lords. It's a problem in countries that have had their supplies reduced or cut off altogether. Hey Merck, list the countries and what they are getting for supplies. That's none of our business? Well I am afraid that it is. We have Parkinson's, you see. When some of us are treated like pawns on a chessboard, none of us are safe, especially when there is this deafening silence from the medical industry, and from the government policing authorities who are supposed to protect us from drug scams.
Check Google: buy sinemet.
The Parkinson's industry is increasingly underground.

Forgive me, I dont have an economist neuron in my brain, but do all of the shortage countries have nationalized medicine? Why aren't your governments fighting this?

Pharma runs circles around government health agencies, especially as companies that sell in 80 countries, such as Merck, are incorporated separately in each country, so any one of them can claim that the decision was made in a different legal jurisdiction. Or, witness Pfizer setting up a shell company with no business and no employees, to plead guilty of criminal charges leading to the $2.3 billion fine they paid. None of the executives could be charged, as no one worked for the bogus company. This was done with the full approval of the FDA and the Dept. of justice.

No PWP orgs and no mere nation can operate around the world the way Pharma does.

In socialized Canada, the federal health department sent out a press release warning of the shortage, and it was basically a copy of Merck's press release - shortage, not bad quality, change of supplier, it's none of your business... which was especially bizarre, because Merck does not sell sinemet in Canada. Bristol-Myers-Squibb does. And BMS sent out a similar press release. Calls made to Health Canada would get you another copy of the press release which gave the following advice: call up your doctor and get him to find you an alternative.

Mysteriously, the shortage in Canada disappeared. A side deal with Apotex? Who knows? The truth is taboo wherever it can be seen.

That;s about all. Health Canada and Pharma write their press release together; the customers are never present when the deals go down. Merck and Apotex shut down production, and the impact on us was not even part of the equation. The government agencies have no more awareness of PWP than the perps do. And the careers are inter-changeable; basically work for the health department until Pharma gives you a better job. So be kind to your future employer.
Pharma contributes more to political parties than any other group except Wall Street.
Parkies are considered to be almost wards of the state; no longer locked away in institutions, but still definitely not self-aware, self-deciding citizens. The business formula does not work because the customers are not present anywhere in the process - it's not the free market, nor is it government controlled; it has all of the disadvantages and none of the advantages of both.
But basically, the Nobles in the House move in circles where there are pharma executives, investors, scientists and doctors. They do not rub together with spastics and retards. There is no political advantage for them to turn against their friends and donors, in favor of the kind of rabble that inhabit this forum.
But it is still legally possible in some countries to appeal, not to the politicians, but directly to a Prosecutor, demanding that justice department lay criminal charges, as they would with any other form of organized crime.
Meanwhile the Parkinson's advocacy newsletter in Switzerland thanks those who pay the cost of the PWP newsletter - and every one of the generous donors was a pharmaceutical company.
There is no shortage of sinemet in Switzerland.
Co-incidental of course.
Yes, the socialized medicine countries should be going after the fat-cat pharmas, you would think. But they do not. Nor do the PWP orgs.
We are always on our own, surrounded by reptilian predators. A hell of a way to run a disease. But it does give us a perspective from which to observe the society around us and its response to our illness. And we see a lot of things we never thought we would see. Not a great consolation prize, but special.

There is so much irony here. Pharma plays money games and controls the governments and organizations. Marijuana use grows drug cartels that are waging war and murdering in the streets; using it makes granny or grandpop a "criminal," "drug abuser", [I love that one] and oh a "sinner" .

And the patients suffer, can't move, in pain, can't sleep, can't eat, can't relax and heaven forbid if they have a few laughs. Fun? How frivolous! That means you aren't in control.....say what? In control of oneself.....is there a pill for that? What is that- control of yourself with advanced PD?

Keeping critically needed drugs from patients is drug abuse. If they want to play games, legalize medical marijuana and we won't be filled with such anxiety all the time. It's not just for potheads anymore than PD is just a movement disorder.

this is off topic - i just get angry when i'm worried about survival don't you? i don't want to start a different topic.