Actually I was pointing out that it was already being done. And I was just discussing it as a debate /pro/anti/ it wasn't a conclusion yet, it was a discussion.

Big leaps made in words that matter.

paula

As patient advocates are starting to make real headway in “gaining a seat at the table,” this is the time to pull together, not split apart.

If you want to come to the table, you must know ahead of time what others think. To do this requires discussion. Anyone who posted their opinions and were given disagreeing viewpoints they disliked and they pulled their posts off of this thread it was because they chose to. No one posted any attacks on them, just different ways of looking at the same issue. Obviously they are still asking for discussion by starting new thread requesting open discussion. But the thread beginswith a series of "Facts" they believe are absolute truth. Someone clearly has no desire to discuss this issue or listen to other person's "Fact's" and give them any serious consideration. Several persons in this thread have posted "Facts" by way of quoting experts in the field.

I do not disagree with the posters facts, only the posters conclusions. The conclusions do not take into account how the pharmaceutical company is allowed to police itself, and pays of the government handsomely, in order to do so. By leaving things "status quo" no needed housecleaning will be done regarding the way pharmaceutical industry takes care of business.

Fact: A survey of federal lobbying using figures from 2000 showed that health caare was the single biggest lobbying, with the $237 million spent in health lobbying amounting to 15% of the total lobbying budget.

Fact: At least through the end of 2004, the lobbying clout of the industry has largely guaranteed that no major governmentaal unit in the United States would take any action that seriously compromised the industry's interests. State governments trying to cut Medicaid costs through the extended use of drug formularies or by forming multistate coalitions to bargain for lower prices, regularly were descended upon by herds of lobbyists, and their legislators were bullied into backing off.

Fact: While a bill to allow the reimportation of cheaper drugs from Canada and other countries surprisingly passed the House of Representatives and gained the vocal support of key senators of both parties, this legislation somewhat mysteriously disappeared into the committee system and never reemerged.

Fact: A good deal of today's pharmaceutical research is unethical because subjects do not give an adequately informed consent. Most subjects in human research studies assume that they are contributing to science. Studies that are designed with marketing as a top priority -- expecially studies that might never be published if the data do not turn out favorably for the sponsor--hardly count as advancing science. If subjects are put to any risk at all, even a minor inconvenience, as a result of participating in such a research study, they have a right to be informed frankly of the real purposes. Moreover, if their personal physicians are pocketing hefty finder's fees for recruiting subjects, the patients deserve to know this so that they can demand their fair shares. Strict enforcement of informed-consent requirements would start to dry up the subject pool for studies that today constitute the worst offenses against good science.

Fact: The total contribution of the pharmaceutical industry to research, is in the range of 28 billion annually. This amounts to about 5.6 percent of the $500 billion annual revenues of the American pharmaceutical industry.

Taking these "facts" into consideration, how can you support patient participation in research. Isn't this the reasons we want to "come to the table" or are we so overwhelmed at the honor of being invited, that we are fearful of not being included for trying to initiate positive changes and make a difference for future patients?

Just the Facts, maam,
Vicky

Paula, ok - a post that patients are already being paid for trial participation.

"big leaps made in words that matter"

Almost. Big leaps et al wasn't a quote, it was an observation of how my actual words [and they matter] were modified. Sorry not to be more clear.

well it's a pi where is the editor? sorry ng contest how interesting. i hear they solve nothing.
paula

I finally figured out what you meant. just trying to understand. you win.

Jean when you understand that the battle is not with me or any other pwp that doesn't meet certain standards, then I've won.

paula

This is certainly an interesting thread. I am the wife of a PWP and, believe me, there is nothing we would like better than for Rich to be able to participate in a Parkinson's trial. However, due to psychotic issues which still remain unresolved, he is not a candidate for participation in trials. There are many reasons I'm sure that people can't participate. I have taken my husband to many doctors and not one can say whether or not he had a breakdown and Parkinson's was a separate issue, or whether his mental state was precipated by the Parkinson's. It would be exciting to partake in a clinical trial that was testing a neuroprotective therapy; however, I'm sure there are many people who simply don't meet the trial criteria and are eliminated from consideration. I also believe there are a lot of people who hope someone else participates so they don't have to, never considering the consequences of that decision. These are just my rambling thoughts.
Maureen

Our emotions are so closely interwoven with this illness that I would hesitate to separate them. Things that were recently mentioned at a conference concerning these issues were using people's own doctors to supervise clinical trials, or bringing the trial to the patient. This is somewhat of a logistic nightmare as far as collecting data goes tho. I wish you well, it's harder on the caregiver I think.

paula

this needs re reading!
excellent point!