paula said, "We really have no choice tho do we?" This is as it now stands - under the current laws and system of drug approval, we do not have a choice. That's why Perry Cohen, PWP and Pipeline Project is so adamant about getting the patient to the table (the FDA table, the NIH table, the drug company board table, etc.

Think about this - the way our present system works, when a drug does not meet its primary endpoints, there is no recourse but to accept the business decision to halt the trial. But there are many questions left unanswered:

• * Did we wait long enough to see if it would work?
  * Did the participants have atypical Parkinson's?
  * Were the outcome measure tools unbiased and accurate?
  * Were the participants compliant?

All of these questions and MORE, yet not anywhere in this system does the participant has any input.

What can we do but go along with protocol? We can kick, scream and throw a tantrum, but nothing changes.

HELP!

Peg

THIS is what must be changed if we want better treatments and/or a cure!

Moondaughter,
I believe that - There is a paper that describes the manufacture of drugs, and we probably all imagine that there are factories that have rolling production of drugs.......... this paper which I shall post when I can find it again, is a proper study of manufacturing procedures, describes how drugs are made in huge occasional batches, then the machinery is a cleansed for the next drug.......... there can be long gaps in time before the next batch.

Given that at the current time there are many shortages globally and a commensurate amount of people with many different conditions are suffering, it is time that the pharmaceutical industry came clean over the way it operates, and started to build bridges back to it's original purpose, making medicines that benefit patients. They do not make profit without patients, sadly they seem to have forgotten this. The whole thing needs to be rethought, but I guess that is a long way off...........

as most of you know we are finishing a book about this forum and the spin offs from it and the many lessons learned. I wrote out a long post that said what peg said and lost it so we were thinking exactly the same thing about how hard perry cohen and a group of pipeliners have prepared the way and getting patient presence on the team is what drives us all.

We are united globally. Can someone from the UK set up a skype group called Global PD Creative Collective or something like that.We're still on an editing and writing marathon. The book is about this forum to a very large degree so wouldn't it be cool to end it with a new international collective?. As soon as the second copy of this book is ready. we are going to descend on the site like turkey buzzards on road kill. ooh dear that is the most southern expression i've ever uttered. Hanging around with southerners but it's so Reba. Which is one of my favorite shows actually.

So swept, bryn, the other interested and interesting man whose name is ecsaping me but i have his emal.

Could any of you do the skype group set up? you have to contact us mostly for emails and plug them into a skype group. That would save some time as we finsih the book as well as create the unity we are seeking. THere is no need to rush goal setting but the goal to begin talking must be met now and from there ideas will fall iinto our laps. we are now Parkinson Creative Collective, Inc. - tax exempt.

Adding: this forum is not going to be competed with in any way. It will give us the information that we want to investigate or summarize or interview about. Anything creatively advocate intended. A weird phrase but i lost two or three of these posts already. Gotta send.

cheers!

We have no choice but we do have human rights
The failure to ensure access to medical therapy threatens fundamental human rights under the'protections against cruel, inhuman or degrading treatment and rights to health and to life.' It also poses serious ethical problems for health care providers, violating basic principles of beneficence and non-maleficence (i.e., do good/do no harm). Knowing that a shortage of medicines was to occur and making no provisional planning is surley endangering.The industry providers failure must be accounted for in the public domain andGovernments should take immediate action to ensure access to substitution to ensure fulfilment of ethical and human rights obligations

agreed, Swept.
We are not the ones who have to whisper.
And there are laws of man and of the universe, and the Parkinson's Industry as it currently exists is hysterically disfunctional and it will implode. And human health will be talked about, with science and art.. the whole human

YES LL thatwould be nice - as we are seeing here with wallstreet (for example )the big corporate players don't answer even to our government - at least not until exposure of the issues were taken to courts ! Look what happened to the government initiative to bail out troubled mortgages- banks pocketed stimulus cash and foreclosed on taxpayer homes without sufficient documentation! so Jane Doe negotiates her mortgage down and the bank agrees and shepays on time only to come home to a foreclosure notice hanging on her door and an y meaningful communication between her and the bank is fruitless until it became a massive problem. Thankfully our government was able to halt foreclosure process but only after massive lawsuits were filed.

so like bob says....."who are ya gonna call?" (the pharma lobbyed FDA??). seems like ethics laws are a possible venue but then media purchased by pharma isn't going to air or publicize our plight.

maybe we could develop national/international patient advocacy coalitions that would be like AARP that could generate sale contracts with pharma on a national basis as BD suggested- then we could come to the table with some leverage.


It does need to be rethought indeed. the old addage "think global act local" comes to mind. we can engage in an internal revolution by thinking out of the box-we don't have to acecept what we are told by an industry who needs patients to fuel their coffers - we are fundamentally not aligned together it appears to me- we want cure ..but then they would lose our business if that happens.

After thinking about your post for awhile, swept, i must sadly admit that those rights or even holding human life as top priority is no longer a given in the US. it was replaced with the bottom line a long time ago.

[II know what you mean Paula but its not about head hunting,and blame.That would get us knowhere.Its a desire to communicate acquire knowledge and respect for all involved by encouraging corporate responsibility

Realizingrights champions humanitarian issues globally, a founder and president is Mary rRobinson once Irish PM
A world connected by trade and technology,must be bound by common values Today's globalzation is one of stark contrasts.
There are more connections - markets, people and ideas linked as never before. At the same time, there are more divisions - between North and South, between rich and poor, between the powerful and powerless
A world connected by technology and trade must also be connected by shared values, norms of behavior and systems of accountability. Realizingrights works to raise corporate standards and strengthen public policy to ensure that the activities of companies do not contribute to human rights abuse,Its aims designed to lead to positive outcomes.
Realizing Rights is energetic aware , innovative and has helped to successfully develop initiatives around the world that are advancing the notion of shared responsibility for the challenges of globalization.

Could be usefull perhaps

you have a great command of the language involved; glad you are helping us with it. The purpose is to work together....it's better. And maybe it's not about head hunting but instead head watching...being watchdogs and reporting back to the group. Much more coming soon..