This week saw the start of the Parkinson's UK campaign to halt the Sinemet shortage in the UK.

If you live in the UK you can make a difference by taking part in this campaign, and by spreading the news of it to other people with Parkinson's, and support groups.

Go to:

http://www.parkinsons.org.uk

And follow the links to the campaign page.

This is a very important campaign, the Spanish have already done their bit, and now it is our turn in the UK. This is a global shortage so it is well to remember that supplies merely diverted from one country to another may see patients in other, maybe less empowered, places at the mercy of these shortages. There is a way to express this in the standard email that will go to Merck, as well as to add any personal experience you may have had of having difficulty obtaining this essential medication.

If you have had adverse effects from being swapped from one supply to another, onto a generic, or another medication, mention it, it will also add weight to the campaign. It is important that it is understood that there is a fine balance with Parkinson's medication, and disruption to supply of medication can result in very real difficulties for the individual patient. Your experience counts.

If you join the National Campaigns Group, they will keep you informed of progress on this campaign, and how Merck responds to their request for an online meeting with patients to answer questions on why there is a shortage of an essential medication.

I suggest that if you have specific questions on the reasons for the shortage that you contact Parkinson's UK with them, they will be interested in anything that supports this campaign.

You can also go to the Parkinson's UK Facebook page to follow how things develop.

If you belong to a group or site with people from the UK please feel free to copy this post.

If you are reading this, and you are outside of the UK and experiencing difficulties, please post. The shortage announced was global, and it would be good to get a picture of what is happening elsewhere.

Thanks
Lindy

PWP should support each other around the world.
Right now, Parkies in the U.K. are fighting a battle of great significance for PWP around the world. International support would be a great help.

We need you
We need you
We need you
We need you ALL
and we need you NOW

I just want to add...

Please take a look at the number of posts and views generated over what amounts to little more than trolling on the part of a new member who may or may not have intended to do so.

Really, is the thread that important? I understand its appeal...it is like a virtual car crash, but haven't we gawked long enough? It is a sad state of affairs when a person who will most likely never really post anything of substance here achieves rock star status (2,500 look sees with 90 posts) in less than a week.

Why is it we even bother discussing the ethics of clinical trials and expressing concern over the rights of PWP? Why do we bother noting that there is a shortage of Sinemet in the UK and that people are/will suffer because of this?

I am really quite appalled that trolling behavior takes on that much notice or interest in our forum, while Carey's info on a new non-motor study and this info here has a paltry total of like 250 views. Some would say oh, that's PD apathy, and I would say no that is just not caring or defeatist or complacent or human nature, but please could we move on to things that really do make a difference in people's lives?

(1) The "Campaign to end the Sinemet shortage" is not now on the front page of the U.K. site: it is further inside, at:

http://www.parkinsons.org.uk/about_u..._campaign.aspx

(2) I don't know who has the resources to do this:
Send the U.K. appeal for support to all Parkie org.'s that can be found - all of them in Canada and the U.S.A., and even better, around the world, calling for international support whenever any Parkie group anywhere in the world comes under attack. E-mails from their members would be good; even more remarkable would be a statement of support from the organizations themselves, on letterhead. (Very unlikely, but worth asking)
Remember: the supply of Parkie drugs in Spain was replenished by diverting drugs from other countries; replenishing supplies for the U.K. may involve diverting supplies from a pharmacy near you. Or some other event, inevitably, in the future, where you will have a dog in the fight. You already have a dog in this fight. If Parkies roll over and die on this one, Merck will have demonstrated to all other drug companies how to stonewall the only customers for this drug. It will be a long-term victory or a long-term defeat for PWP around the world.
Choose wisely.
(3) Lindy, will you update us on what goes on about this in the U.K., from time to time?

Pipeliners are putting it on the front page of our site. Webmaster recovering from surgery so a little slower going but it will soon be up.

paula

This was posted on the parkinsons listserve by Linda H. and will be posted on the Pipeline site.


The following was posted on the Parkinson's Neurotalk Forum, another online PD discussion group, by Lindy, a member from the UK. She has been leading the effort to get the truth out of Merck about the shortages of Sinemet in the UK, and elsewhere -- actually it is a "global shortage" Please read the following, take the requested actions and help spread the word.

from Neurotalk Forum
http://neurotalk.psychcentral.com/thread127645.html


"This week saw the start of the Parkinson's UK campaign to halt the Sinemet shortage in the UK.

If you live in the UK you can make a difference by taking part in this campaign, and by spreading the news of it to other people with Parkinson's, and support groups.

Go to:
http://www.parkinsons.org.uk/about_u..._campaign.aspx


"This is a very important campaign, the Spanish have already done their bit, and now it is our turn in the UK. This is a global shortage so it is well to remember that supplies merely diverted from one country to another may see patients in other, maybe less empowered, places at the mercy of these shortages. There is a way to express this in the standard email that will go to Merck, as well as to add any personal experience you may have had of having difficulty obtaining this essential medication.m by Lyndy

If you have had adverse effects from being swapped from one supply to another, onto a generic, or another medication, mention it, it will also add weight to the campaign. It is important that it is understood that there is a fine balance with Parkinson's medication, and disruption to supply of medication can result in very real difficulties for the individual patient. Your experience counts.

If you join the National Campaigns Group, they will keep you informed of progress on this campaign, and how Merck responds to their request for an online meeting with patients to answer questions on why there is a shortage of an essential medication.

I suggest that if you have specific questions on the reasons for the shortage that you contact Parkinson's UK with them, they will be interested in anything that supports this campaign.

You can also go to the Parkinson's UK Facebook page to follow how things develop.

If you belong to a group or site with people from the UK please feel free to copy this post.

If you are reading this, and you are outside of the UK and experiencing difficulties, please post. The shortage announced was global, and it would be good to get a picture of what is happening elsewhere."

Thanks
Lindy"


there is more informatioin on the shortages on this thread"
http://neurotalk.psychcentral.com/thread113354.html