[lindylanka]

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

[Bob Dawson]

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

[Conductor71]

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?

[Bob Dawson]

(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?

[paula_w]

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

[paula_w]

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

[lindylanka]

Parkinsons UK had the following message on their website yesterday.


You can submit questions on the forum from tomorrow, Wednesday 14 July. We will try to get answers from MSD posted on the forum the following week.

You will also be able to submit anonymous questions via our website. Look out for more details tomorrow.

Depending on the number of questions received we may need to pick representative questions to be publicly answered on the forum.

If you are from the UK and have experienced difficulties due to the shortage please use the Parkinson's UK forum or their website to submit questions.

Please post this on to relevant message boards and forums.

Thanks
Lindy

[LindaH]

I came across an article yesterday that sheds a little light on what is going on in the UK -- the problem is actually not limited to Parkinson's meds. It even has a name -- parallel exporting -- and it means increased profits for drug manufacturers, while putting patients at risk. Likely that same practices are going on elsewhere in the world. Excerpts are below

Article: Medicines shortage putting patients' health at risk.
Authors:
Robinson, Francesca
Source:
Practice Nurse; 2/26/2010, Vol. 39 Issue 4, p10-11

Abstract:
The article examines the impact of parallel exporting on patients' health. The trade known as parallel exporting is explained together with the extent of its operations in Great Britain. Problems being experienced by contractors in obtaining certain branded medicines are presented. Initiatives by the Department of Health in finding solutions include the joint guidance that outlined the legal and ethical duties on the supply chain and the summit to be called

EXCERPTS and SUMMARIES:

“ Shortages of more than 40 branded medicines that are used to treat a range of conditions including high blood pressure, lung disease and asthma are causing distress and inconvenience for patients.
Speculators who are exporting drugs from the UK to other EU countries for a quick profit are the root cause of the problem. They are taking advantage of a weak pound and fixed prices negotiated by the NHS to sell drugs for higher prices elsewhere in Europe.
The trade -- known as 'parallel exporting' -- is not illegal under European trade regulations. A briefing paper published by the Association of the British Pharmaceutical Industry (ABPI) claims that 11% of the UK's 12,600 pharmacies and a tiny number of dispensing doctors are exploiting the system in this way. The trade, according to data compiled by market analysts IMS Health, is worth £30m per month.
Over the past year, there has been a 'substantial' increase in the number of problems that contractors are experiencing in obtaining certain branded medicines, according to the Pharmaceutical Services Negotiating Committee (PSNC), the body that represents community pharmacists..."

…One-third of 150 pharmacists surveyed last summer by the pharmacy trade magazine Chemist and Druggist, said patients have suffered because they have had difficulty sourcing a medicine…

'The situation is particularly worrying for older patients with long-term conditions who rely on their medication. It is a concern for them when it is not available. The worst thing for a patient is to have to change their medication when they have been on it for some time. A drug that is not quite the same may disturb the balance of that person's body either physically or mentally….”

The article goes on to say that in 2009, the UK Department of Health created a joint guidance , outlining the legal and ethical duties on the supply chain , and their consequences. Health minister Mike O'Brien was to have held a summit last spring to address the issues and find solutions.

O’BRien was quoted as saying:
“'I have made it very clear that it is a few unscrupulous people that are putting profits before patients. Rather than selling drugs to NHS patients as they should, they are selling them abroad for greater profit,'
MPs are also concerned about the situation and are monitoring it carefully. Dr Howard Stoate MP, chair of the All-Party Pharmacy Group (APPG), said it is not acceptable for patients to be put at risk because of drugs shortages:”

'The APPG held a meeting on this last fall in the House of Commons that resulted in a commitment from key stakeholders within the supply chain, “including manufacturers, wholesalers and pharmacists, to work together to make sure that the needs of patients are met,..”

Is there any evidence of this actually happening?

The shortages were said to be caused by:
1. manufacturers used to deal with multiple wholesalers that would compete to supply pharmacies, but now many drug companies use only 1 or 2 wholesalers.
2. 'direct to pharmacy' supply routes – giving the manufacturers greater control over supply and higher profits
3. manufacturers issuing pharmacies with quotas of drugs to try to manage supply.

In other words, its all about maximizing profits. The medical needs of patients comes last.

dOES The British govern ment have any regulatory or legal means to control these practices.

“…A spokeswoman for the Royal Pharmaceutical Society of Great Britain said …
'Obviously this is very worrying for the patient and puts them under extra stress. It also creates an additional workload for pharmacists. They often have to ring round other pharmacies in an effort to buy drugs from each other or do swaps. That's no way to conduct medicine provision in the 21st century.'”

Hope was expressed that the summit of all stakeholders would help solve the problems. We’ll have to check if it was actually held and if it did any good’.

The article ends with a list of meds reported to be in short supply. It INCLUDES
Azilect 1mg tablets (Lundbeck)
Sinemet 62.5 tablets ( Merck, Sharpe and Dohme)
Sinemet CR tablets ( Merck, Sharpe and Dohme)

The source is listed as
http://www.psnc.org.uk/

An updated list also includes

Madopar capsules and dispersible tablets (Roche Products Ltd)
Madopar CR capsules (Roche Products Ltd)
(Madopar contains levodopa and benserazide and I believe is similar to sinemet
See
http://www.psnc.org.uk/news.php/795/...s_list_updated

[Bob Dawson]

Artificially generated shortages at manufacturing level cause bidding war and black market at the retail level.
same dynamic as cocaine
so they go after the retailers !

[Bob Dawson]

here is where the sinemet has gone:
http://www.google.ca/#hl=en&source=h...872bfce7e245ec