Lindy,

We can always count on you as our insightful voice of reason when tempers flare.

I guess that my concern stems from the fact that although the UK, Canada, and Australia were receiving official word from Merck on this shortage, their letter reads "a global shortage". I think this whole thing is smoke and mirrors to pave the way for perhaps a newer, more expensive formulation- a bait and switch so to speak. We have none of this old stuff, but we do have what you need...under a different color, strength, formulary, etc. Given that "global" is the operative word in the letter, why aren't our American organizations then broaching this? For me, this highlights that we need to have a panel or team of patient advocates working at these orgs; or at least one of them, they should serve as liaison to pharmas, the AAN, etc. Please don't tell me they already do...sigh?

I guess what bothers me is the lack of an official response from anyone?!? Pharma has absolutely no accountability to anyone other than shareholders, I guess. This also highlights how we need ONE unified collective representing us all with cognates or corellaries around the globe- a Parkinson's UN! ha. We might then have some power or clout to hold pharma more accountable. You mess with one Parkie, you mess with them all.

Laura

I believe your theory can also be classified as "insightful." What you just said probably is about "the truth, the whole truth, and nothing but the truth."

But let's examine what you said about needing one collective entity to make a difference. Quoting you, "Pharma has absolutely no accountability to anyone other than shareholders, I guess." Although this statement is most likely true, there is a force to be reckoned with far more powerful, by virtue of sheer numbers alone - and that would be the patient population.

The PD community could "collectively" refuse to buy this excuse (AND the alternative treatment offered). So start stocking up on Brand X everybody.

Peg

When I mentioned the shortage to my pharmacist, he said "why would they have a shortage here....they get top dollar in the USA?" But more interestingly, i would like to know what exactly is in sinemet? Looking under another big rock and finding more inaccuracies..... and which patients have been saying for years. They are not all the same [generic and/or brand name]. How do they differ and let's stop settling for a brand that doesn't work as well.

It is illegal to import drugs into the United States. Does this apply to prescription drugs only? What about over the counter? Where could we find a potential violation? Is it legal to import each medicinal ingredient? And of course, what is the law regarding importation of medicines to Australia, Canada and the UK?

Is this at all relevant? i realize this is "not a USA problem" but can't help but think it will affect us somehow. Pharma is paying $80 billion to keep imports out.

Paula,
The answer to your questions, which were mine too - oh so obvious. Just read carefully and follow down the pages.


What is in levodopa? Scroll down and keep reading
http://www.made-in-china.com/product...s/Levodopa.htm


Where is it mainly produced?
http://www.chemicalbook.com/Chemical..._CB2402938.htm

Go figure

There is more, but let's talk.
Lindy

I don't know if any of you use our "new posts" feature at the top of the page here. But today the posts at the Myasthenia Gravis forum are discussing the "shortage" of Mestinon in Canada!

They rely on that drug to MOVE and BREATHE... and that shortage is impacting them too!

Seems like something terrible is afoot!

lindy,
this web site is not working. getting a message
The information you are looking for is not available currently.

hmmmmm

girija

What is in levodopa? Scroll down and keep reading
http://www.made-in-china.com/product...s/Levodopa.htm

The information you are looking for is not available currently.

Laura,
You are probably right about smoke and mirrors, which is why i feel that it is of paramount importance that we find out how levodopa/carbidopa is classified. If it is not listed as an essential drug it should be. There is nothing at present in the pipeline that is as versatile as the simple 100/25 tablet that can be combined with other things to give maximum benefit - despite all the bad press.

In the meantime affirmative action needs to be taken on this, and that can only be done by dealing with the people who make decisions on our behalf, in the right way.

If approaching the right people takes time, effort and clear-sightedness, that's all right, it is something that patients CAN do.

What we do not need now is lots of angry patients, that way we will be written off. It will push us much further from the table we wish to be at.

I simply so not see how anyone can take legal action on something that has not yet happened.

Lindy

Try it again,
it seems to be available intermittently

http://www.chemicalbook.com/Chemical..._CB2402938.htm

(grrr just lost this posting)

Reading the first posting led me to Apotec's web site. This drug company has its manufacturing facility in Toronto, Canada. The FDA has forced them to suspend production of many of their products, including Apo-Levocarb and Apo-Levocarb CR due to dificiencies at the manufacturing facility. Production for the l dopa generic was suspended in Novemever. The individual with whom I spoke did not know when manufacturing would resume. He did say there is a shortage of their product everywhere; the US, UK, Canada, AUstralia, etc. Pharmacists have been directed to substitute other generics for their product. He reiterated several times that they were following the FDA process; the inference was that the FDA was dragging its feet thru this process (or perhaps the compnay is just anxious to resume manufacturing. It is not just APO-LEVOCARB that has been suspended.)

Recall Posting Date
2009/12/21
Trade Name
Apo-Levocarb CR
Recalling Firm
Apotex Inc
150 Signet Drive
Toronto, Ontario
M9L 1T9

Recall Start Date
2009/11/30
DIN, NPN, DIN-HM
DIN 02245211
Hazard Classification
Type II
Dosage Form
Tablets
Strength
Carbidopa - 50 mg
Levodopa - 200 mg
Lot Number
All live batches
100's - HN8694, HH8695, HN8696, HR7081, HR7083, HV1089, HV1096, HY7843, JA8415, JA8417, JC2860, JE3728, JE3729, JE3730, JF0050, JF0051

500's - HN8691, HN8692, HR7082, HV1091, JA8416, JA8418, JC6779, JE3732, JE3733, JF0049
Marketing Authorization Holder
Apotex Inc
150 Signet Drive
Toronto, Ontario
M9L 1T9

Reason for Recall
Routine stability monitoring detected failing dissolution results for four batches.
Depth of Recall - Distribution
Canada, Barbados (JC2860), Dominica (HV1089), United Arab Emirates (HV1096, HY7843, JA8415, HV1091)
http://www.hc-sc.gc.ca/dhp-mps/compl...c_2009-eng.php

Lindy,

I'm on your side too! I see both side of this I guess in that I understand the anger of patients who feel manipulated and let down along with the fact that we need to focus on being methodical, rational...in other words work to find answers without being overly emotional. I honestly don't think we could file a suit based on what we have right now- I basically was supporting what I see as Paula's fighting spirit; I guess I wasn't taking her literally? Hmmm...maybe I should have -

I am definitely not letting the PD orgs off the hook. I expect very little from pharma but not groups whose raison d'etre is PWP centered in advocacy and information sharing. Maybe I' m off base here, but as a newly diagnosed PWP, I looked to those groups and wondered which I should join based on who best represented all of us-I never have sussed that out. This lack of representation is largely what brought me to Neurotalk and to the PD Pipeline. In the end,I have found all of you and for that I am most grateful.

Laura