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02-01-2010, 05:30 PM | #1 | |||
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Senior Member
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What you have said sounds plausible and likely if they are intending to market a new formulation of something that has been around and untouched for many years. I agree we should be angry and express concern but I worry that boycotting research hurts us more than helps in the long run. I take CR but honestly like Lindy it more helps smooth out dopa peaks or spikes rather than gives me a longer duration. One way we can speak is to not buy Sinemet. period. Hoarding is exactly what is expected. I've been toying with trying Zandopa (mucuna pruriens) and making my own capsules...now seems like a great time to do so. I know that this is not feasible for some, but it would be fantastic time to send the message that we are not enslaved by them; there are alternatives. Laura |
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02-01-2010, 07:05 PM | #2 | ||
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Senior Member
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I simply do not understand the logic of any of the explanations coming from Merck and their subsidiaries.
Why there is a shortage is not explained, why it should affect both branded and generic, why CR is singled out right now though the initial EU notice included all variations, and why it should be 'world wide'. There has been no implication of shortage of raw material, or problems with distribution, only a vague statement relating to 'source of supply' changes and 'timelines needed to obtain regulatory approvals' (world wide???) ......... but they KNOW that it is an essential replacement drug, not a palliative. Would they not have taken care to ensure a continuing supply if they were shifting production or some such? The more I see this story the less sense it makes. And no comment ANYWHERE from any of the orgs that represent patients and/or their interests, though it has been announced on three continents..... We are not just patients but consumers as well. Perhaps patients are due some answers that make the real picture clearer. |
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02-01-2010, 08:05 PM | #3 | ||
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Senior Member
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I called Canada's only maker of Sinemet a company called Apotex, and they said that they have entirely halted production of Sinemet because they are "undergoing re-organisation" and because the market is flooded with cheap Sinemet from China and Canadian workers won't work so cheap. They claimed to be unaware that production lines have been closed in other countries, and the world-wide shortage will last two years - it was news to them that their production shut down at the same time as in other countries - who would have guessed? Oh, and they said they halted production and recalled what was on the shelves. True or not; makes no sense. A recall? Also said they might re-start production in a few months, but Health Canada takes a long time to approve.... new packaging? new production line?
If they are shutting down production in this obviously co-ordinated manner from country to country because of the flood of cheap Sinemet from China, then where is the flood? How is a world-wide shortage caused by a flood of cheap imports? I called Health Canada and asked lots of questions and they said they would get back to me. They also did not seem to be aware that production is being shut down in places other than Canada. All at the same time. What is needed is criminal prosecution to at least attempt to bring out the truth. If it is not actual gangsterism, at the very least it is criminal negligence causing bodily harm. Get a huge population addicted to a drug without which they can't function, and then pull the plug on them. Zero explanation. Synchronized destruction of production in different countries is not something that can be blamed on China. Something else is going on, and what we need is police raids followed by energetic criminal prosecution. They do not fear billion dollar fines for criminal activity, they do not fear billion dollar pay-offs to silence people they injured: they just add it to the cost of the drug. The only thing they would fear would be prosecution for a series of crimes, such as reckless endangerment, criminal negligence resulting in bodily harm, racketeering, price fixing; with luck the withdrawal from the drugs will not actually kill people, otherwise, what was the title of that book....."None dare call it manslaughter." They fear nothing so far; facing 20 years in penitentiary might improve the accuracy of future press releases. It would be wise at this point for Merck or one of the Parkinson's orgs to come forward with an explanation, or at least some new lies that have a bit more credibility than the old lies. It would be interesting to have an accurate time line about where and when and why the production of an essential drug was curtailed, and why it takes two years of people suffering before they can crank out the same addictive pills they have been selling us for half a century. There is an element of information missing here. Something is not being said.. It's all very amusing until someone gets hurt. |
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02-01-2010, 08:53 PM | #4 | ||
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Senior Member
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Merck's letter to Australian doctors is iconic, a real collector's item: 50% to 80% of patients will be denied the drug that allows them to function.... who decides? Who gets the drugs and who does not? Triage time. Playing lifeboat. Ten people in a room, drugs enough for only two of them. Who decides who are the eight and who are the two? What criteria?
In the Australian letter, Merck asks the doctors to help out with the triage. But notice - nothing Parkie is consulted. Or informed. Our lives are on the line and we are not even part of the discussions. Somebody somewhere handed out this addictive drug like candies and then unilaterally pulled the plug, without consultation or information or conversation with the people who will suffer as a result. It's the same system as the Amgen GDNF caper. Now, like then, we are groping for information about decisions to cut us off from medication that allows us to walk down the street. Who is going to decide who gets cut off from the drug? That should be a public debate in every neurology department, and especially, in every Parkinson's organisation. One way would be by drawing straws. A lottery. Highest bidder. No, it is going to be "who needs it most". But again, by what criteria? I need it more than you do, but your doctor has more pull. Who are the 8 who get thrown off the lifeboat to save the two - that should be decided in every Parkinson's group. At least as theater. Because what is going on is not right. Let the doctors come forward and explain exactly what criteria they are using to decide thumbs up or thumbs down. What are the regulations of this triage, and who is supervising the regulations? Health Canada? Or Merck? What are the criteria, gentlemen? Ten Parkies in a room and you got drugs for two. We want to hear you say what you are going to do. |
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02-01-2010, 10:29 PM | #5 | ||
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Junior Member
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Shortage in 2003!?
With a google search I just found that there was a Sinemet shortage in the US in 2003 as reported in the fall newsletter of the Parkinsons Disease Foundation: "Sinemet and Sinemet CR The Parkinson's Disease Foundation (PDF) has received numerous calls from patients who are unable to get hold of their Parkinson's medications, Sinemet and Sinemet CR, either at their usual pharmacy or elsewhere. Both medications, but particularly Sinemet CR, have been very hard to find in recent months. PDF has contacted Bristol-Myers Squibb, the distributor, to determine why these medications have been unavailable to patients. Speaking with a company representative, we learned that: "The current shortage of Sinemet and Sinemet CR is due to manufacturing issues. Bristol-Myers Squibb is working with the manufacturer of the medicines to obtain an appropriate supply of both Sinemet and Sinemet CR." The company reported that the manufacturing issues are being resolved and that both Sinemet and Sinemet CR are now being distributed. However, due to the backlog of orders, it is likely to be the end of 2003 before supply levels are fully normalized." http://www.pdf.org/en/fall03_Sinemet There was nothing else giving more detail about the events in 2003 or now. |
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02-02-2010, 08:53 AM | #6 | |||
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In Remembrance
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with much love, lou_lou . . by . , on Flickr pd documentary - part 2 and 3 . . Resolve to be tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant with the weak and the wrong. Sometime in your life you will have been all of these. |
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02-02-2010, 05:17 PM | #7 | ||
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Senior Member
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Health Canada called back. It is not their department. It has nothing to do with their mandate, their mission, their purpose, their jobs.
They will say nothing whatsoever about the sudden closing of Canada's only sinemet production; they will say nothing whatsoever about the fact that sinemet production is being curtailed around the world, with no explanation; they will say nothing about who is going to decide who gets the drugs or not, who conducts the triage and by what criteria; Health Canada has nothing whatsoever to do with any of this. They would not answer any question whatsoever. They said I could call the drug companies. Which I already did. Same as Health Canada. No information, no concern, no problem. Health Canada 613-957-2988 (And this is socialized medicine. Hahahahaha!) No doubt about it. We completely on our own. |
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"Thanks for this!" says: | paula_w (02-14-2010) |
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