..."it is very important that we are seen as concerned patient advocates, and not as scaremongers"
The only scaremonger is Merck; in fact they are the only ones claiming there is a world-wide shortage; no one else has said so; and every three months they mail out letters to doctors and pharmacists saying that the situation is getting worse, but refusing to explain anything. The first wave of letters sent by Merck in Australia said that 50% to 80% of patients would have to be taken off sinemet; three months later, the second wave of letters said that all supplies of CR in Australia were cut off entirely.
In the U.K., Merck did three waves of scaremongering: the first was that CR was in shortage, the second downgraded to shortage to a total disappearance of CR; the third saying that other formats of sinemet were now also vaporizing into thin air.
Some members of my group buy sinemet in large quantities from India, (taking a risk on the quality); the salesman in India says that sinemet is easily available, and that his sales have gone through the roof. The only shortage, he says, is a shortage of Merck labels to put on the containers.
If the pharmaceutical industry is unable to provide us with the same boring drug that has been the Parkinson's "Gold Standard" for half a century, with cosmetic variations, the question is why. Is the shortage of sinemet caused by the incompetence and negligence of Pharma, or is it caused by viciousness and greed?
You can be sure no one will tell us. Unless, like the tiny Parkie group in Madrid, someone starts to prepare criminal charges against the perps. In Spain, they did not get the same series of scaremongering threats from Merck. In that country, the first letter from Merck said that there would be a shortage in Spain that would last a year and a half. But when PWP replied with a threat of pressing criminal charges against the individual managers responsible for this charade, sinemet was back in production in Spain within 3 days, and the product was being shipped within 2 weeks. So the second wave of Merck letters in Spain announced that the shortage was over, as Merck diverted supplies from other countries to buy their way out of the protests their first letter had set off. And after buying off Spain, they sent the new letters in the U.K., announcing that CR was totally gone and Regular is disappearing fast; the longer Merck works on the problem, the worse it gets.
For PWP, I think this is all an exercise in futility. It is worthwhile that we know about it, but our chances of changing it are about the same as if a few of us on this site get together to take down the Mafia. We don't have the resources to take down the Mafia.
Waste of time; as long as some drugs are sold at 96% gross profit margin, as long as Parkinson's drugs bring in three billion dollars a year, they are certainly not going to listen to us. We can wear ourselves out battling Big Pharma, but nothing will change until a fair percentage of Pharma executives find themselves locked in a prison, thereby providing a disincentive to treating sick people as cheap meat for their grinder.
May as well just go and live our lives - Big Pharma, like the Mafia, drug dealing, prostitution, etc. will still be there long after we are gone.
It would just make things so much easier for us all if Pharma could tell us straight what the price is and what we get for that price - as it is when dealing with prostitutes. They, at least, are honest about what they are doing.