Actor urges push to speed therapies

By Associated Press | May 8, 2007
http://www.boston.com/business/techn...eed_therapies/

Actor Michael J. Fox appealed to scientists and investors yesterday to aggressively translate scientific research into creative treatments for debilitating diseases, including the Parkinson's disease he has fought for more than a decade.

Fox said grants from the National Institutes of Health have created a system that mainly encourages academic scientists to publish papers that yield academically interesting answers. But the system fails to translate the discoveries into treatments and cures.

Nor do pharmaceutical and biotechnology companies have an appetite for high-risk studies critical in determining whether creative ideas could yield therapies for the 20,000 human diseases that have no cure, Fox said. They are more interested in repackaging old ideas and compounds in an effort to continue reaping vast returns.

"Levodopa is the gold-standard treatment for Parkinson's . . . But it's a little frustrating that the best drug we've got is one that's been around for 40 years. 40 years!" Fox said at the BIO International Convention, a four-day event in Boston expected to attract more than 20,000 researchers, investors, activists, and others.

"But, hey, credit where credit is due -- I couldn't be happier about the recent advances. What comes to mind is antidepressants for dogs, which makes it a little easier for me because my dog is feeling better," said Fox, who either put one hand in his pocket or gripped the podium to control visible symptoms of his disease.

Fox noted government and commercial investments in medical research pump more than $100 billion a year into the expensive and tricky search for new drugs, and there is much talk about finding more sources of finances.

"I'd argue that filling the unmet needs of patients across all diseases isn't about more money -- it's about spending the money more effectively," he said.

He called on individuals, whom he said provide an additional couple of billions of dollars in private philanthropists capital to medical research, to raise their own bar of giving -- saying "the grateful patient syndrome" does not help to encourage the development of new therapies.

"We are failing to incent the high-risk innovators who could really make a significant difference more quickly," he said.

Fox, 45, who starred on TV's "Family Ties" and "Spin City" as well as the "Back to the Future" films, was diagnosed with Parkinson's in 1991 and revealed his condition publicly in 1998.

In 2000, he quit full-time acting because of his symptoms and founded the Michael J. Fox Foundation for Parkinson's Research. Last year, his foundation committed $7.5 million across seven grant programs to 16 companies, and the number is expected to grow this year.

if we want a private doctor to lets say, give us a transplant of our own stem cells, who are they to say, NO!

I was told this was a free country, free decisions made by -we the people.
They have the right to die laws in Oregon and all of us according to the US Contitution have the right to life, liberty and to pursue this goal,

Did we lose our rights or does it just look good on paper?

The pharmaceutical industry could not exist in its present form were it not for two major deviations from the ideal "free" market, first, the exclusine monoply rights granted by patents; and second, the ability to practice price discrimination of drug resale (rules that officially prohibit cheaper Canadian drugs from being re-inported back to the states.)

"The pharmaceutical industry earns nearly two-thirds of its profits in the United States since drug prices in the rest of the industrialized world are largely government controlled. Those profits rely almost entirely on laws that protect the industry from cheap imports, delay home-grown kickoffs, give away government medicall discoveries, allow steep tax breaks for research expenditures and forbid government officials from demanding discounts while requiring them to buy certain drugs."
Gardiner Harris in the New York Times"

"You just don't get it ... We've got more money than God!" Phillip Morris Executive

"If we put horse manure in a capsule, we could sell it to 95% of these doctors." "Pills are to sell, not to take." Harry Loynd, President of Parke Davis, 1951-1967

In the early 1950's when Dr. Jonas Salk invented the polio vaccine, he was asked why he had not tried to patent this lifesaving discovery, which surely could have made an immense fortune. Salk appeared startled at the question and replied, "How can you patent the sun?" His answer precisely captured one mindset about these matters -- First, that a responsible medical scientist would not seek to make personal profit off a discovery; and second, that there were some areas of medicine and of nature that were simply off limits for patents and private ownership.

I beleive genetics should have that same mindset. All of the above came from a book I am reading by Howard Brody, Director for Medical Humanities at Texas University called "Ethics, the Medical Profession, and the Pharmaceutical Industry -- Hooked All of you should get this book. It's very interesting and enlightening. You can order it online at www.rowmanlittlefield.com

Vicky

Vicky,
Thanks for your post especially the quote from Dr Jonas Salk. I was fortunate to meet him at the Salk Institute when my husband was working there. At that time, Dr. Salk was working on AIDs vaccine and was troubled by the direction medical research was going i.e profits before people. He talked about open patents for public use. This was in early 90s. Anyone with more info on open patents for public use?

Girija

After I was raised as a little college grad, I then went into post grad education to make me more "marketable". I then went out into the bigpaharm world and was going to cure "Something". I had faith in them. The team. But just like that movie "The Firm", I slowly realized that there would be no practical application to my best thought out plans, only resistence. I was not there to help "cure" anything. I could never understand why all the good ideas whithered on the vine.
I think that MJF saw this light too, when he saw "good work" from his "people", but nothing tangible ever coming from it. Why? what was/is going on? Money, that's what's going on. In the halls of research, the idea is to produce science, just make products that only marginally "useful" to the world, all the while making good researchers "just do there jobs" and "be productive". IT has been noticed by many on this board that the years go by with nothng being resolved. The world makes it's living from the labors of young healthy people, who only care about how large their paycheck is this month. I have given up trying to understand why we see the end of our suffering delayed to the point of hopelessness for many of us. THe stem cell debates have been burning for decades now. WE've seen this as an impediment to the search for a cure. WE even have seen remarkably promising procedures like GDNF infusion get tossed into the garbage can. We've seen nothing really new and effective come our way. If i sound defeated, it's because I am.
IT's easier to be hopeful at the start of PD, when dopa works well and you feel like PD is only "bothersome", not an all pervading, life destroying, horrible condition, where one welcomes a reprieve from it and it's ugly menacing tentacles that destroy ourselves , our families, and the immense human will to survive.
PD is as bad as cancer, AIDS or any of the other diseases that slowly consume the human spirit. I'll stop now, with my apologies to those who still have fight left in them. cs

I have to say it hurts my heart, that you are hurting, and we have all seen
our hope -slide by, put on hold for five years at a time, but I know your intentions as a chemist were pure, and if things were to be realized -
the lives of people are the diamonds.
dreams should not be seeing how much money you can steal from people keeping them on palliative medicines...

rewards will be based on the love system
not the Gold standard.

Tena- Should I shut up and not detract from the good works that are being done by the "new generation" of scientists? Or should i stand up and scream "you aren't doing enough!"
What will it take, for PD to become such a rampant disease in the west that young children are suffering from it, or the numbers of PD afflicted people become "more than noticeable.
I would love to cure malaria, and the myriad of other 3rd world dseases that strike the young down in their prime. But I haven't got a lab any more and I am "put out to pasture". I would love to cure hate and all that it has done to humankind; but i am only a "thinker" now and have no audence.
O, if only i could rise from the depths of PD induced inability to do anything; i might have a chance of realizing my life's dream. To put the feeling of feeling fine in just one little corner of the "diseased world". Your brother , cs

AMERICAN MEDICAL STUDENT ASSOCIATION
HOUSE OF DELEGATES 2007

REPORT: AL4

INTRODUCED BY: Bich-May Nguyen, Pharmaceutical Policy Coordinator, Action Committee on Health Policy
SUBJECT: Action Committee on Health Policy Year End Report
TYPE: Report
REFERRED TO: For Information Only


With respect to your Action Committee Activities for the 2006-2007 Year:

What were your strategic objectives, and how (or to what extent) were they accomplished?

Objective Statement of Accomplishment
Bulk purchasing To revise Medicare Part D to include provision forgovernment-negotiable bulk purchasing of drugs
Legislation currently sitting in senate (S. 18) and house (H.R. 5064) subcommittees[/INDENT]Post-marketing surveillance [/INDENT]To strengthen post-marketing surveillance powers of the FDA[
Hearings on S. 3807 held in November 2006[/INDENT]Open patents [/INDENT]To convince more academic medical centers to open patents for essential medications for developing countries[/INDENT][/INDENT]Working on local level at Harvard with newly established UAEM chapter to encourage Harvard to open patents and to serve as model for other AMCs[/INDENT]PharmFree AMCs [/INDENT]Master List To compile a database of pharmaceutical policies of US academic medical centers[/INDENT][/INDENT]with MedEd’s PharmFree Coordinator and AMSA intern Lainie Ori to develop database and grading system to evaluate AMCs[/INDENT]Publicize PharmFree[/INDENT]Promote and educate people about conflicts of interest between physicians and pharmaceutical representatives[/INDENT][/INDENT]Contacted by Pew Charitable Trusts/IOM regarding study on conflicts of interest between physicians and pharmaceutical industry[/INDENT][/INDENT]Interviewed by freelance writer for The New Physician article[/INDENT][/INDENT]National PharmFree Day drew 80 students at GWU as well as partners AARP & Consumers Union[/INDENT][/INDENT]Educated classmates on conflicts of interest[/INDENT]
Which resources or contacts would have added value to your Action Committee project(s) this year?
Objective Resource(s)[/INDENT]Contact(s)[/INDENT]Bulk purchasing
[/INDENT]AMSA LAD[/INDENT][/INDENT]AARP[/INDENT][/INDENT]Consumers Union[/INDENT]Post-marketing surveillance
[/INDENT]AMSA LAD[/INDENT][/INDENT]Consumers Union[/INDENT]Open patents
[/INDENT]UAEM (did have)[/INDENT][/INDENT]PharmFree AMCs Master List [/INDENT][/INDENT]AAMC[/INDENT][/INDENT]ACGME[/INDENT][/INDENT]Publicize PharmFree[/INDENT][/INDENT]No Free Lunch (did have)[/INDENT][/INDENT]Consumers Union (did have)[/INDENT][/INDENT]AARP (did have)[/INDENT]






Which leadership opportunities did your position(s) create for you during the 2006-2007 year?
[/INDENT]•Contacted by various people and groups regarding questions about conflicts of interest between physicians and pharmaceutical industry[/INDENT][/INDENT]•Was part of LALI committee on Veteran’s Health, assembled list of state-specific resources for participants[/INDENT][/INDENT]•Talked to Boston-area medical schools about PharmFree Day activities[/INDENT][/INDENT]•Wrote an op-ed for PharmFree Day[/INDENT][/INDENT]•Helped brainstorm ideas for National Convention 2007 and obtain speakers for HPAC sessions[/INDENT][/INDENT]•Will speak at Boston-area AMSA chapters about PharmFree campaign in the spring[/INDENT]
Evaluation: How did you monitor the progress of your project(s)?
Objective Evaluation[/INDENT]Results[/INDENT]Bulk purchasing[/INDENT]Legislation was stuck in committees, used legislation tracking service to determine status[/INDENT]Post-marketing surveillance[/INDENT]Legislation was stuck in committees, used legislation tracking service to determine status
Open patents[/INDENT]Established new UAEM chapter at HSPH to encourage Harvard to open patents and lead other AMCs to do the same[/INDENT]PharmFree AMCs Master List [/INDENT]Intern has compiled database of AMCs pharmaceutical policies; we are still gathering information and developing grading system[/INDENT]Publicize PharmFree[/INDENT]Difficult to unite the four Boston medical schools in doing one large PharmFree Day event[/INDENT]Medical student schedules are difficult to work around to organize speaker events around, will speak at some Boston area schools in the spring

For the National Office: In which way(s) can the AMSA National Office add value to your AC projects?

I could have really used the LAD’s help in sorting through legislation and politics, but the LAD never met with HPAC at June meeting and I had trouble getting in contact with her in August and September because she was busy with her LALI. I tried to contact her after the LALI, but she was sick. I emailed her before November meeting about what bills I thought were good, but she never got back to me about what AMSA could support. I never got time with her alone at November meeting to get her expertise.
The DSP was very helpful in setting up an intern to work on the AMC pharmaceutical policy database.

I feel where you are coming from Charles but every so often there comes somethilng or someone who says to hell with all of the in fighting and the useless protocol and takes a stance for the good of someone and that may be himself.

eg

Stephen Hawkins has done almost nothing for the cause of ALs since the day he was diagnosed and all have ranted and raved about it and still he did nothing.

Well he paid a visit to Israel recently and lo and behold he is going to do two commercials for the cause of this disease. After over 40 years he does this.

Now you know me ever the positive one lol. But with all the information that is coming out about research in Israel I have to wonder what exactly motivated him to do this. It is totally out of character.

Anyone know what he knows and I don't?

Maybe we had better forget about the United States and Canada as well and concentrate on those countries that are trying to seriously find the cure. Sure we have the most money but we also have the most reluctant people in the world to part with their own little bit of it.

Except of course in the case of promoting what we believe all over the world. then the bucks are there out of the backroom.

About Stephen Hawking. My take on him is that he is a wonderful scientist, but people don't understand the meaning of scientist, doctor, etc. Stephen is a mathematician and a physicist, That's his forte and that's what he studies. He probably doesn't even dabble in neurochemistry, and if he does, he is probably just as stumped as the world's best neuropharmacologists and neurosurgeons who are actively working on ALS. ALS is even more mystifying of a brain disease than PD is; there is little that has been revealed to even give ALS victims some kind of relief from the disease. For the life of me, i can't understand why or how Stephen is still alive, in his debilitated state, or how he can even function as a "powerhouse" researcher in his field.
Stephen has at his hands, the worlds most powerful tools to do research in his field, and that costs big bucks.
What a bona -fide PD researcher needs are expensive tools such as "instant" literature searching to see if an idea has been written down somewhere and what work was performed on it. LIterature searching has been made "ultra-easy" in the field of medicine and chemistry, but it costs a lot of money to get these services on-line. And then, when one gets an idea, it is usually always a tremendous arbeit to actually do the work itself.
How many neurosurgeons have actually performed "cell transplants" in humans? How many have good ideas of inventions that would make such procedures easy to do? How many companies with big pockets, have given the go ahead to perform such work? How many companies are currently working on PD doing more than just developing a "better" agonist? Have PD animal paradigms evolved beyond MPTP or 6-hydroxy dopamine lesioning of one brain hemisphere of a rat, and then simply trying to quantify the effect of a single chemical entity for it's ability to lessen the effects of the procedure, which hardly means anything translatable to the PWP in the street?
What we need are neurosurgeons that have the guts, the tools, the ability and support to do human studies, upon the discovery of promising new techniques, developed from unique and truly workable results with higher animal forms such as primates, and the use of controversial methods , without PETA or some fanatical religious group burning down their labs or shooting them.
THis brings to mind GDNF infusion. It is obvious that state of the art techniques and brave new inventions could get "the goods" to affected brain areas, as seen by newer imaging techniques like never before. WE can see and specify areas where cellular activity is compromised in certain brain diseases, and with the ideas generated by these "specialist" scientists we can think of things and ways of introducing these things to these areas.
But there is something about that is lurking sinister and is holding back the work of these geniouses IT is fear and ignorance aplenty, the nemesis of the bright light of science. WHy? I don't know. I can visualize the procedures and the promising substances in my mind, but I am so much of nothing to do anything about it.
Just like ridding the world of the anopheles mosquito that transmits malaria, many biologists have put forward ideas to anihilate the species, or intercept the transmission of the vector responsible for the disease, but what have we got so far; just expensive new chemicals from Artemesia for symptom relief, and insecticide impenetrated netting for over the beds of people that work a bit, but all it takes is one slip up, like going potty at night, and you're a malarial case.
And AIDS, at least there is knowledge and tools to stop the transmission of this horrible killer that has left millions of orphans in sub-sahara Africa, but the ignorance and pure "who gives a $hit" attitudes of human beings will ensure that there will be many more victims before some genious biologist discovers a vaccine for this rampant killer.
So much for brain diseases. we aren't personally responsible for getting PD, we don't know what causes it, except to say it's vectors are partly genetic, partly environmental. Other than that, we keep getting stumped on how it develops and how to slow or prevent it from occurring at all.
I'm too dyskinetic to go on; I'm kicking the computer table with my knees and making to many spelling mistakes, so i'm just too damn frustrated to go on. cs