This was in a nordic newspaper, I think in Stockholm, and I am told it says that Merck has cut down the supply of both Sinemet and Sinemet CR in Sweden, to a drastic extent. Wise decision, since the drug pushers recently added in a warning that L-Dopa, not just agonists, causes hypersexuality. If there is one country in the world where you don't want more hypersexuality, it is definitely Sweden. Have you ever been to a nightclub in Stockholm on a Friday night? Definitely not a place to take Viagra. You would not survive the evening.
But although it is a wise decision to prevent even more crazed sexuality in Sweden, it still leaves lingering doubts, such as, by what criteria are some countries, such as Australia, totally cut off; others, such as the UK, Switzerland and Sweden, get drastically reduced supplies, others, such as Canada, announce a shortage and then suddenly say they were just kidding.
And in countries getting just some supply, by what criteria do they choose who deserves the drugs and which PWP we could do without anyway. And how come Sinemet production shut down in different countries, and in different companies, all at the same time? I keep calling Merck but their telephone appears to be off the hook. Here's the article:
inemet Depot snart slut
Läkemedelsverket meddelar att det snart blir brist på Parkinsonmedlen Sinemet Depot och Sinemet Depot Mite i alla länder, däribland Sverige. Restsituationen beräknas kvarstå under hela 2010.
Lagret av kombinationsläkemedlet Sinemet Depot Mite (karbidopa/levodopa 25 mg/100 mg) beräknas ta slut kring månadsskiftet februari/mars och lagret av Sinemet Depot (karbidopa/levodopa 50 mg/200 mg) kring månadsskiftet april/maj.
Det finns också två generiska depotprodukter, Levodopa/Carbidopa från Ratiopharm och Levocar från Sandoz.
– Om också depotalternativen tar slut, kan det bli problem. Då får man använda vanlig Sinemet eller Madopark Depot, säger docent Olof Sydow, överläkare, Neurologiska kliniken, Karolinska Universitetssjukhuset och medlem i expertgruppen för neurologi.

Ummm, my bad, Canada is maybe not getting ALL its drugs; there may be enough, or not, maybe yes, maybe no. Yes and no are radical words. “Maybe” is the Canadian way.

Letter from Merck to Australian doctors and pharmacists:
“Pharmacists can assist by recommending all patients currently on Sinemet CR to make an appointment with their prescribing doctor as soon as possible to consider alternative arrangements.”

Press release from Health Canada:
Patients may also consult their health care professional in order to explore alternative treatments if they are unable to maintain an uninterrupted supply of their medication.

So Merck and Health Canada seem to write their press releases together. Millions of Parkies around the world should go see their doctor (who will not be available because every patient will be standing in line) and Parkies should “consider alternative arrangements”. None of them along the line realize how insulting that is.

It’s funny that Health Canada is copying Merck’s press release, because Merck does not even sell the drug in Canada !!!

Sinamet is sold in Canada by Bristol Meyers Squibb, and the only manufacturer of the drugs in Canada, Apotex, shut down all of Canada’s production of the drug, in January, four months after Merck announced a world-wide shortage of the drugs.

My friend Marty says this is all too bad to be true. He says he can get you all the pharmaceuticals you want from this guy he knows in India who knows some guy in North Korea, and there are pills aplenty.
It would be wise if someone in the Parkinson’s franchising empire would just come forward, and tell us the truth. The truth, the whole truth, and nothing but the truth, so help you God. Just a list of facts. The timeline of events that lead to this fiasco. It would be such an amazing event in Parkieville, to be considered to be part of the picture, considering that we are the only consumers of the product and we pay $3 billion a year for the privilege.

I wonder how the corporate bo-ethicists would spin the optics on this one.

There has been some sort of major screw-up here, and it says everything that we are the only ones not permitted to see what went on. It’s our lives, our health, our money; the pills are made just for us. Shall we “consider alternative arrangements”?

I just know I’ve got enough drugs to get me into March. After that, it’s either legit pharma, or Marty’s friend in India, depending on which gang wins the turf.

It is really quite exciting being a Parkie. It’s all James Bond and Al Capone. Marty’s friend says its cost four cents to make a sinemet pill. Friend sells for a buck; 96% gross profit. Better than T-bills, that’s for sure.

But I have no idea what is true and what is not in all of this. The PD Bureau of Confusion and Disinformation keeps our hound-dogs off their trail. They beat us every time; piece of cake. They sneer when they tell us that if we don’t like it, we can go find ourselves an alternative arrangement. It is rare to be treated with such contempt; but they think they are talking to brain-damaged vegetables.

We learn a lot, being Parkies. But mostly stuff we wish we did not have to know.

So how many production units shut down, where and why; how is the triage done at the national level and at the patient’s level, how did management screw up this badly, who is profiting from the artificially-induced shortage, and who is going to do a huge study to find out what impact there is on PWP when they have to switch drugs, or whatever “alternative” they find. The PD org in Canada warns that kicking cold turkey on sinemet “can cause severe and irreversible damage”. Hey, don’t say you weren’t warned. Now get down on your knees and beg.

Marty called. He checked with some people he knows and they say the world is awash in generic levodopa. It is churning out of North Korea, China, India, the Philippines. Marty says Merck couldn't take the heat, so they got out of the kitchen.

But what about sinemet with the added feature of CR? Remember how they told us it would cause 50 percent less vomiting? That's a great feature on any product. So this stuff coming out of the Third World, what is the puke average? If I can find out the average mileage of a car, surely, given the fact that Parkies spend $3 billion a year on these drugs, and we are the only market for this product, at least they should tell us whether or not this mysterious new supply of the old drug includes the CR advantage of 50 percent less puking. I believe this to be valid question.

Ursula says this is all a complete waste of time. Nothing as dysfunctional as the Parkinson's franchising operation can ever produce anything good. Darcey sent a lot more Blues and so we are putting it on loud. Sorry I blackened so many pages again, with words, words, words; when what we need is mostly pre-verbal. I was just hoping to find out if there is a huge surplus or a huge shortage, and what it is we have to pay to keep those people out of our lives so we can live through our sickness and demise with dignity.

Didn't the generic company in Canada (apotex?? something like that) put out a statement that it closed down due to cheap chinese generics on the market? I was unaware that european, north american and australian markets were being supplied with such generics.......... they like their generics to come with some kind of provenance......

Merck has not used that explanation. It's explanations are are around supply and distribution. And they have used legitimate paths to make their announcements.

The record of safety in drugs coming out of China is not that great, South America had some awful drug disaster, the details of which I do not remember, last year, where the medication originated in China. There was the milk powder disaster that was supposedly internal, but some of it found it's way out. Looking at those two stories gave a window onto how drugs are produced and distributed in the east - let' just say there is a problem with regulation - and sweat shop style production - and criminally produced fake drugs as good as identical until they are analyzed - and no watchdogs.

If there IS a flood of these cheap drugs in the world how come there are so many countries in which PD is still largely untreated due to a lack of drugs........

While the internet is awash with strange links if you do so much as enter 'sinemet shortage' as a search, most of them seem to be very dubious, and relate more to sinemet abuse than anything else.

Actually everything about this is still dubious, unclear, and very, very fuzzy. It is not wrong to seek some clarity.

Hi all,
Apologies if I haven't been paying attention but do UK and Canada have the drug Madopar?
Australia does and I think New Zealand as well have it.
It's been around since my parkinsons career started and I've not been able to tell the difference as far as ons and offs go between it and Sinemet.
For more accurate dosing it's superior in that it can be quartered but like I said otherwise I can't tell one from the other.
Lee

Lindy
I would prefer not to buy drugs made by slave labour in Stalinist North Korea and marketed through a mail box in Calcutta by a man who calls himself "The Doctor", but so far he's the only dealer returning my calls.
People who work at Merck tell me "unofficially" that their unnamed supplier of sinemet (out-sourced) somehow disappeared and is being replaced by another unnamed source and the delays are caused by governments -= the time it takes to get FDA style approval and "even for the packaging".
They changed the packaging?
The story in the street is that the only shortage is a shortage of Merck labels; that Merck's supplier blindsided them and took their pills to another dealer who pays a better cut of the take; and The Doctor says it is the fault of governments such as Australia and the UK where governments push down the price of drugs; and now Merck found a new dealer (I wonder if it is The Doctor?) but governments are delaying the process by wanting inspections and approvals. Must be a dealer who did not need FDA type approval before now.
So is there a shortage? It is supposed to start in March. Or is it just a Merck shortage? Is The Doctor a blessing or a gangster? Who is Merck's new supplier? None of this was foreseen? They just woke up one day and their supplier had gone over to.... China?
The Doctor says the drugs are all available, under different labels; Merck's ex-supplier just changed mules because Merck was taking too much of the cut and squeezing the supplier and the retail street dealers.
They say it was a real blow-up between the Australian government and Merck that got the Aussies upgraded from "shortage" to "none at all". And here's the cool rumour _ The Doctor says it was the Aussie government who threw them out, partly in anger, partly to avoid that problem of triage we talked about - how to enter a room with 10 Parkies when you only have drugs for 2. The Aussies have lined up non-Merck suppliers to replace Merck. According to The Doctor in Calcutta.
I will now "cease and desist" as my pen-pals like to say, unless some other countries report how they are handling it.
I think I have made my point that it would be useful to have information from sources other than The Doctor. So is there a shortage or a surplus? Did Merck have their phone fixed? Is there anybody there standing near the phone? When it rings, you are supposed to pick up that small part and say hello.

made it up
The Parkinson's association in Switzerland reports that they are replacing Merck sinemet with Madopar, made by Roche, as you suggest, but they also state that sinemet CR should NOT be replaced by the Controlled Release version of Madopar, something about it having different rates of absorption. Once the panic is over, it seems that Sandox will grab the Swiss market with another version of the same drug. None of them seem to be aware that some Parkies have immense difficulty switching from one drug to another, or that going cold turkey can cause severe and irreversible damage to the brain and the entire nervous system. They actually do not seem to know that when they sneer and tell us that if we have complaints we should just go and find another treatment, that it is insulting, because for the past 50 years Parkies have been hoping to do just that,
but despite spending $200 million a year on PD research, the "gold standard" remains the same drug, the sinemet or L-Dopa or Madopar, whatever name the dealer wants you to remember. There is no other treatment for us to go to.
The Doctor in Calcutta is re-insuring in that he says, there may be some vomiting and such like, but not irreversible damage; the pills are plentiful and cheap. Probably there will be enough good quality drugs to go around, and Merck can just go jump in the ocean. But there is also great nervousness - the shortages are advertised as starting next month and lasting a year or more. Some Parkies are frantically hoarding drugs. Some are afraid of what might happen. The Doctor says nothing will happen, except for Mercke losing its place in many markets. It's nothing to worry about, he says.. But he also says his sales are sky-rocketing.

(Rough translation by Google)

17 feb 2010
Dear Sir

DISINFORMATION FROM THE MINISTER OF HEALTH (Spain)
…The Minister of Health, Trinidad Jimenez, was asked what had happened to the Parkinson's drug shortage, to which the Minister failed to respond. The Minister must know what is happening as a person who has to ensure the health and welfare of the citizens of this country, some people with a neurodegenerative disease, incapacitating and disabling.
It seems very strange that the Minister is unaware of the situation when the National Association of People with Parkinson TARAY, after doing their own research on the 4th of this month comes in contact with the company in commercializing the drug MSD Spain (Sinemet) and they tell us they have no stock of the drugs and they are looking for a supplier they cannot restore the domestic market until 2011.
From this moment, our group has been in contact with the Department of Pharmacy who is in the same building as the Minister of Health, from whom we have had no response whatsoever. We also got in touch with the Spanish Agency of Medicines; after much stress tell us they have obtained a commitment by the MSD.
Gentlemen, these are not commitments, these are obligations that the company has to fulfill certain laws, which must have a minimum of stock and if they fail the law requires they be punished like any citizen, they are playing with the health of many people.
Who is to deceive, if the 4th of this month there is no medication in stock…., if they have the supplier of the active ingredient? How can already supply the market?
Not if you understand it but I do not understand anything and the Minister and the Federation of People with Parkinson’s being quiet as if nothing happened…

Muchas gracias
Atentamente
Francisco Fernández Cimas
Vicepresidente Asociación Nacional Parkinson TARAY
Manuel Serrano, 23
28300 Aranjuez (Madrid)

Desinformación de la ministra de Sanidad

17 feb 2010
Estimados Señor
El día 16 en los desayunos de EuropaPres a la Ministra de Sanidad, Trinidad Jiménez, la preguntaron que había pasado con el desabastecimiento de medicamentos de Parkinson, a lo que la Ministra no supo responder. Qué Ministra tenemos que desconoce que pasa a su alrededor; una persona que se entiende que tiene que velar por la salud y el bienestar de los ciudadanos de este país, unas personas que tienen una enfermedad Neurodegenerativa, Discapacitante e Invalidante.
Me parece muy extraño que la Ministra desconozca la situación cuando la Asociación Nacional Enfermos de Parkinson TARAY después de hacer sus propias investigaciones el día 4 de este mes se pone en contacto con la empresa MSD comercializadora de dicho medicamento en España (Sinemet) y nos dicen que no tienen stok que tienen que están buscando proveedor del principio activo y que después no tendrán restablecido el mercado nacional hasta el año 2011, luego nos mandan un documento que les adjuntare para que Ustedes lo comprueben personalmente.
A partir de este momento, esta asociación se pone en contacto con la Dirección General de Farmacia que esta en el mismo edificio que la Señora Ministra del cual no tuvimos respuesta nunca, también nos pusimos en contacto con la agencia Española del Medicamento en el cual después de mucho insistir nos dicen que han obtenido un compromiso de la empresa MSD. Señores esto no son compromisos, esto son obligaciones por parte de la empresa que tiene que cumplir unas Leyes, que tiene que tener unos mínimos de stok y si no los cumplieron se les tiene que sancionar igual que a cualquier ciudadano, pues se esta jugando con la salud de muchas personas.
A quien se quiere engañar, si el día 4 de este mes no tienen stok del medicamento, si no tienen el proveedor del principio activo, ¿Cómo puede ser que ya estén abasteciendo el mercado?
No se si ustedes lo entenderán pero yo no entiendo nada y la Señora ministra y una Federación de Enfermos de Parkinson encima calladita como que no pasara nada, eso si a lo mejor no dice nada por que tiene mucho que agradecer...

Muchas gracias
Atentamente
Francisco Fernández Cimas
Vicepresidente Asociación Nacional Parkinson TARAY

Forgot to say: from Extramadura al Dia (digital newspaper)

http://www.extremaduraaldia.com/cart...dad/96191.html

And also in other newspapers throughout Spain, such as Hispanidad:

http://www.hispanidad.com/noticia.aspx?ID=134276

and it is being discussed on Spanish radio talk shows.
No silence of the lambs in Spain !

Just a footnote - MSD is effectively Merck - Merck Sharpe & Dohme. It's what we get in the UK mostly, though some comes from Bristol-Myers-Squibb

Good on the Spanish, it must be all the bullfighting, no qualms about taking on a monister. minsster, whatever.....

Thanks Bob.