I don't see hostility towards MJFF. I see expressions of hurt and pain and a further dwindling of options. Mike is a big boy [well- rhetorically speaking- lol]and we all love him. His foundation perhaps has more to announce about their plans and we realize they owe us nothing here. But that shouldn't stop us from stating the obvious about treatment development and trying to save ourselves. Doctors have a huge attitude problem - anyone who has ever gone to one knows their moods and rudeness, along with almost total lack of explanations. This carries right over into research.

I do not see this thread as a patient vs MJFF issue and do not think it should be portrayed as one or made into one. Just below the surface lies frustration and loss of hope.

paula

In research and medicine, there are a number of competing interests with different levels of power/money and different needs or goals. At the end of the spectrum with low power is the patient. At the other end with high power is the faceless corporate entity. Their goals are diametrically opposed. The patient needs a cure. The corp wants money.

Businesses adopt "models" as to how they do things. Outstanding service, for example, is a component of a model that guides UPS or FedEx.

Big Pharma has adopted the "Drug Pusher" model. The first one is free... A cure is the absolute worst thing for them. So why are they even at the table? Because they have the money.

Who sets these endpoints in the trials? It isn't the patient nor does it seem to be the individual researcher. What conflicts of interest are there? The FDA is bought and paid for. Academia gets the bulk of its research funding from non-public sources and also shares in the spoils when a patent makes money.

Senator Charles Grassley (Repub, Iowa) has been peeling back the secrecy of this sorry situation with some success. I don't know if it will change things or not. But I would suggest that if we do find patterns of clinical trials being manipulated to maintain the status quo, that it might be worthwhile to forward the data to his office.

http://www.nytimes.com/2008/11/22/he...3&ref=business

http://www.nytimes.com/2008/11/22/he...tml?ref=health

http://www.nytimes.com/2008/12/03/bu...tml?ref=health

http://www.desmoinesregister.com/art...7/1036/OPINION

From the latter:
"Many universities have banned them or are thinking of doing so, but Ori is in the minority at DMU. After she approached Dean Kendall Reed, he surveyed students and found 2-to-1 favored allowing drug companies on campus. He's appointed a panel to explore the issue.

Reed thinks doctors shouldn't accept gifts, but says much of continuing medical education is possible "only because of the ability to have sponsorship." He says it's important for students to learn how to interact with drug reps. But Ori says no one is teaching how to scrutinize their claims.

Under pressure, the pharmaceutical industry has issued guidelines, to be implemented next month, that stipulate any meals bought be "modest" and reimbursement to consultants be "fair-market value."

But doctors still should be restricted by law from profiting from such promotions.

Medicine saves lives. The problem is when it's dispensed unnecessarily. Petersen wants TV drug ads banned. She praises Iowa Sen. Charles Grassley for his efforts to require drug companies to disclose their payments to doctors.

The problem requires a fundamental shift in our approach to medicine, from profit making to public health. We're the only developed country, says Petersen, that doesn't control drug prices.

Hopefully, with greater awareness, the public will demand change. Meanwhile, on Dec. 8, 2004, AMSA held its first national PharmFree Day, dumping thousands of pharmaceutical giveaway pens outside Pfizer headquarters. A token way of saying those future physicians aren't for sale."

This is an idea which is far reaching--as in it's a stretch from the original discussion and pretty far out there. How about a group letter to Tom Daschle, newly announced Secretary of Health and Human Services? And also Senator Grassley? Even better, we could write individual letters to each of these individuals, explaining the frustration/hopelessness of relying upon an industry whose best interests are diametrically opposed to ours (the patients)? And that we desperately need informed patient advocates at the tables for each and every clinical trial.
Several years ago, I researched the panel assembled to determine if a drug would be recommended for over the counter status. The panel included numerous physicians, representatives from the Phamaceutical industry, and a citizen's advocate, who was a psychologist. The drug was a generic statin, an anti cholesterol drug. How much would one expect a psychologist, who had a university teaching appointment in the dept of psychology, to know and understand about statin drugs? Everyone else on the committee had credentials which could easily have intimidated an outsider. I did inquire whether my citizen's advocate offerred any input. and I did write the Head of the committee, recommending someone more qualified to be my citizen's representative should this committee be assembled again--received no response. Perhaps if we could just vote on the citizen representative. The psychologist (she was young, so statistically would not have considered taking a statin ) would not even pass the "giggle test" in my estimation. Though I doubt anyone else noticed. (not even Merrill Goozner, who notices those sorts of things) I do not think these "panels" nor those assembled to set up clinical trials expect any oversight. The patronizing, unexpressed statement is "we adhered to the guidelines and have a citizen's rep on the panel--what more could you possible want?" Expecting us all to be too stupid to understand, too apathetic to care, or to ineffective to be concerned about.
Another "aha"--we could write Merrill Goozner. He actually reads the emails he receives and answers them.
Olay I will go away now

olsen -

I think you are right on. The Obama administration is promoting the idea that they will be listening to grassroots input; I think we need to take them at their word.

They are soliciting advice on health care (I would include the FDA in that) on the transition website www.change.gov

Also, read here in the Washington Post about how Daschle is dealing with this input. http://www.washingtonpost.com/wp-dyn...l?hpid=topnews

I welcome the opportunity to work on a letter like this with a group of people.

This thread has taken a nice turn; we need watch dogs badly too - Gooz News is excellent; I've had the pleasure of exchanging a few emails with him. And Grassley deserves a medal.

girija - there's much to learn from you. Thank you for joining us.

Rick, anytime you want to play Law and Order count me in. Rosie you seem to have just sat down and entered the conversation like you've been here forever - you sound smart. I'm also including a few odds and ends that I didn't want to always put in separate posts. Zuchin Florwer, don't apologize for not having time when you work. Your posts are always valuable. And Olsen, don't go away - we'll have to come and bring you back.

We are all already watchdogs. The forum and Pd Pipeline project members have been watchdogs for years. if u would like to join the Pipeline email list just sign up at the site- you can get it digested or at the site. i learned most of what I know from being a member of pipeline and right here.

paula

Thanks Paula.

I read ceregene related posts after I sent my message last night, I had not followed any of these developments for the last two years and hence my message. I am back now and I will be happy to help you all in any way I can. Just let me know when, what and where!

girija

Thanks, Chasmo -- I agree with you whole-heartedly. And I have a deep gratitude to the MJFF for everything that it has done, is doing and will do. In meeting MJF several times, I found him to be the most humble, compassionate and selfless person -- his heart is to find a cure, not to get tangled up in the red tape that hampers progress.

Hi, everyone.
My name is Michael Rogan and I am an Associate Director at The Michael J. Fox Foundation. I am an IT specialist and neuroscientist, and I left the laboratory to join MJFF and find innovative ways to increase the efficiency of PD research. My goal is to help people like my mother Marie, who lived with PD for many years.

For the past year and a half, I have been developing online resources to support PD research — this has involved a great many conversations with scientists, patients, funders, bioinformaticians and web techies of all sorts. Our plans, which are still in development, include PD Online Research, which has been conceived as a biomedical ‘e-journal’ that will rapidly micro-publish short analyses and discussion of technical issues related to the execution of PD science. PD Online Research has been discussed with patients and researchers through 2007 and 2008: in individual phone calls and meetings; at MJFF patient research roundtables; with members of our Patient Advisory Task Force; and most recently at the Society for Neuroscience Annual Meeting last month.

As a result of the SFN presentation, we received a number of inquiries from scientists wishing to sign up now, though PD Online Research will not launch until spring 2009. This led to our issuing a brief announcement last week on the MJFF site, directing scientists to a site where they can submit a membership application.

I am sorry to note that this brief announcement led to upset in the patient community because it described only a part of our efforts and suggested, by its incompleteness, that we were specifically excluding patients from our online plans. I want to take this opportunity to apologize for this poor communication and to stress that including patient voices in our new resources has been a primary consideration from the start and has been the subject of much discussion.

In our efforts to come up with a way to successfully enlist patients in the advancement of PD science, we are launching a survey of the patient community for feedback about how their voices can most productively be brought into the mix. Following our inadvertently inflammatory posting last week, and the conversation that has resulted here on NeuroTalk, we have moved up the release date of our patient survey. Unfortunately I can't post a link to it now, because NeuroTalk has just told me that it will take a some time to get permission from them to do so.

I’ll post the link here when I can and I hope you will all share your ideas with us, and help spread the word to other patients. This will be another step in the ongoing research I have been conducting with patients and scientists about these questions, and there will be more steps in the future.

In the meantime, I hope you’ll accept our apology for letting the cart get before the horse on this one, and know that we are working with you in mind.

All the best,

Michael

Thank you Michael Rogan,

I feel like a heavy weight - thousands of pounds I think, lol - has been lifted from my shoulders. I can stop agitating, pestering, and maybe even return to idealism and there are tears in my eyes. You have a community here who just wants to get behind you and help. A little compassion and we are all mush balls, but knowledgeable mush balls.

God Bless You,
Paula

Hi all,
Its been a couple of hours since I read Dr. Rogan's mail, but its been on my mind. I am so excited about MJFF response and I think we are looking at the new way of doing science. This is the way I would want to do research! its so refreshing, exciting for me to see that there is an organization that cares for good science and patients.

Thanks again MJFF!

Girija