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Posted: Tue Jun 22, 2010 9:36 am
by patientx
magoo wrote:I wanted to share a conversation I had with a friend recently. He is a rep working with neuros in my town and here is what he has to say. He has been told by most of the neuros treating MS they could get (insert # of patients) on his drug IF they received special favors. These favors amount to trips and dinners among other things. They are also getting paid very nicely to give "MS seminars" (with a push toward MS drugs) by the companies making MS drugs. And a few are making a lot by recruiting MS patients for studies.
Could you elaborate on this last statement? How are the doctors making a lot by recruiting patients? Do you mean fees paid to them by drug manufacturers for running trials? Or by being paid behind the scenes?

Because, at the MS center I go to and where I am in a study, this is not true.

Posted: Tue Jun 22, 2010 10:24 am
by magoo
Pfizer Inc. paid doctors and teaching hospitals a total of $35 million in the last half of 2009 for services ranging from speaking to other doctors about the company's products to running studies of its experimental drugs.
I meant things like this.

Drug Trials Hide Conflicts for Doctors
By KURT EICHENWALD and GINA KOLATA

When Thomas Parham visited his doctor in the summer of 1995, he expected just another routine checkup. But his doctor had something else in mind.

The doctor, Peter Arcan, suggested that Parham might want to join a study of a new drug to shrink enlarged prostates, according to records of the encounter. Parham was puzzled -- his prostate was fine. But Arcan brushed aside the retired metal worker's questions, saying the experimental drug might prevent future problems. Satisfied, Parham, a 64-year-old resident of La Habra, Calif., agreed to participate.

There was one question Parham did not ask: What was in it for Arcan?

The answer was money. The drug's maker, SmithKline Beecham PLC, was paying $1,610 for each patient that doctors signed up -- money that covered study expenses while allowing a portion to end up as profit for Arcan and his associates.


And this.

Posted: Tue Jun 22, 2010 12:01 pm
by ozarkcanoer
Concerning "free" seminars and meals for patients by drug companies : In the past 2 1/2 years since my diagnosis I have been invited by Shared Solutions (you know the Copaxone people) to several "free" dinners with presentations by MS neuros. My neuro is often the speaker. Much of the hoopla is "sticking to your therapy", or in other words "don't go off your Copaxone". Now when I get these invitations they go into my recycling bin. I don't want to go to another presentation about new drugs in the pipeline.

ozarkcanoer

too close to home? sweat on brown envelopes?

Posted: Tue Jun 22, 2010 3:08 pm
by 1eye
interesting- why are patientx and concerned always together? are they romantically involved? they are probably both the same person, and if so, they must be.

"If you had it all to do over again, would you fall in love with yourself again?"
-Oscar Levant to George Gershwin

"Methinks thou dost protest too much."
-Shakespeare

Posted: Tue Jun 22, 2010 3:15 pm
by concerned
?????????????????????????????????????????????????????????????????

I noticed everybody else also post on the same threads... maybe you're all just one person!!!!


I live with two people, I like both of them
He likes both of me and I like both of him
They´re my alter-ego and to them I´m wed
´Cause I´m happy I live in a split-level head
-Napoleon XIV to Jerry Samuels

dear sweaty envelopes...

Posted: Tue Jun 22, 2010 3:17 pm
by 1eye
"Because, at the MS center I go to and where I am in a study, this is not true."

How would you know what the doctors are doing with drug reps after hours? If you think you are fooling anyone by saying you are in a study, I don't think you have many takers. If pharma loses big time on CCSVI, I'd be inclined to blame certain people, who cannot resist.

Re: dear sweaty envelopes...

Posted: Tue Jun 22, 2010 5:07 pm
by patientx
1eye wrote:"Because, at the MS center I go to and where I am in a study, this is not true."

How would you know what the doctors are doing with drug reps after hours? If you think you are fooling anyone by saying you are in a study, I don't think you have many takers. If pharma loses big time on CCSVI, I'd be inclined to blame certain people, who cannot resist.
I had decided my previous post was going to be my last in this forum, but you questioned my credibility, so I will respond. And this will be it.

You can go back through my old posts, but I will save you some time. Here's one of my first (it was actually interesting reading):

http://www.thisisms.com/ftopict-6150-combirx.html

I was interested in some of the issues that magoo raised, how doctors and hospitals get compensated for clinical trials, etc., so at one of my last visits (about four months ago), I quizzed the nurse about these things. She has been involved with clinical trials for MS for the past 10 years. She told me that the hospital negotiates the fees for the clinical trials up-front - how much they will be reimbursed for nurses' time, doctors exams, MRIs, blood tests, etc. Then a contract is signed. The doctors do not get anything extra for recruiting patients - in fact, it seemed to me they were annoyingly nonchalant about it. And if they were getting paid extra, they must have money to burn, since one drug company pulled them as a site due to lack of recruitment.

Now, granted, this is a hospital, and it's only one. Private practices may operate differently. That's why I was curious if there were any specific examples of doctors making a lot of money by recruiting MS patients for studies.

Yes, some pharmaceutical may stand to lose big revenues if CCSVI is found to be the cause of MS and angioplasty/stenting stops it (though many, including Dr. Zamboni are recommending people stay on their interferons or copaxone). And I'm all for that - how can anyone who has MS not be. But I have yet to see anything that says they are trying quash CCSVI study.

Re: too close to home? sweat on brown envelopes?

Posted: Tue Jun 22, 2010 5:31 pm
by Lyon
.

Posted: Tue Jun 22, 2010 6:04 pm
by mshusband
It'd be awful hard to fake all those YouTube videos though. They'd have to have some skilled costume people ... 8O

Of course, I guess all that could be "fake" too ...

Posted: Tue Jun 22, 2010 6:13 pm
by concerned
A moderater could easily show that me and patientx aren't the same person.
Has everyone who has posted here about getting the procedure done a before and after youtube video?

Posted: Tue Jun 22, 2010 6:23 pm
by mshusband
No ... no doubt about it they haven't. In fact, my wife and I were just discussing this the other day in preparation for her liberation coming up ...

We aren't going to be doing a video either. Because there is no real measurable evidence of how the liberation would help her visibly. She walks fine (ran a marathon a month and a half ago), she is flexible (former ballerina/gymnast that can still do full splits beyond 90^) ... but she will be able to "tell" how she feels before and after.

That's the problem. Even a neurologist would never be able to assess that. So involving a neurologist in a study on her would be worthless. Because he can't tell she feels pain or is numb or weaker, but she will KNOW if she isn't after liberation. How can a doctor tell she has l'hermittes? How could he tell she doesn't feel that any more after?

So for all you question if people feel this or feel that, no, I agree, nobody outside of that person would be able to tell. But what's important is that person experiencing it IS able to tell. And why would hundreds all LIE and for the most part have the same experience?

Posted: Tue Jun 22, 2010 7:41 pm
by concerned
I think you meant 180^, but you have an engineering degree from a highly accredited institution, plus a high paying job and I don't have either, so you're probably right.

Posted: Tue Jun 22, 2010 8:08 pm
by debp
<<Man, one time this pharma rep came and gave me a neato calender and a coffee mug, then I went out and tried to hurt sick people at their behest!!!
Just kidding, but what I wouldn't do for a free lunch!!!>>

If only it were as simple as that. It is like the relationship between politicians and lobbyists. The lobbyists buy lunch, contribute to campaigns, and provided detailed research into the issues they lobby on. They are the experts on their issue so why wouldn't you listen to what they have to say and ask questions. Over time a relationship develops and the lobbyist becomes to go to guy/gal when an issue arises that lies within their area of expertise. Then comes a concerned citizen, who the politician doesn't know from anyone, who has the opposite view as the lobbyist and says so, usually in a not so nice way. Who do you think they are going to listen to?

I wouldn't say the politicians (or the doctors) have accepted free lunch and now have a different opinion. Their information has just been filtered by people who have a vested interest in a certain outcome. Also you believe what is coming out of the mouth of a friend before you believe a stranger. It is just human nature.

Doctors are busy, keeping up on the latest on everything takes time and dedication. It isn't surprising that they listen to people that come in to their office frequently and give them concise summaries of what they might need to know about x. It isn't surprising that they don't question it too much or take the time to look into it further, didn't their friend just do all the research for them? And for the most part I don't think they are in the pocket of "big pharma". They are just human.

But yes I think they are influenced, probably more than they realize. The lobbyists and the pharmaceutical industry do care about efficacy when it comes to spending their money.

Posted: Tue Jun 22, 2010 8:20 pm
by concerned
I'm not saying they don't have influence, just that coffee mugs and calenders don't carry much weight, especially when we're talking about hurting people on purpose for profits.
On the other hand, as I said, there's nothing I wouldn't do for a free lunch.

Posted: Wed Jun 23, 2010 3:48 am
by sbr487
folks, do you know the reasons for IRB rejection for Dr S work ...
WSJ, German paper etc.
Can you believe this?
Everything against ccsvi is taken as a fact and eveything for ccsvi is to be "proven"

BTW, isn't it clear that there is a big lobby working against ccsvi. How else would the iRB have so much anti-ccsvi info?