Medical Research
Who's In Charge Of Finding Cures?
Michael J. Fox 10.25.07, 12:30 PM ET

We're living in incredible times. Scientists at the dawn of the 21st century have access to unprecedented resources for increasing understanding of the basic mechanisms of human life, and for translating that hard-earned understanding into tangible advances in human health. The return on our investment in unraveling the human genome alone promises to usher in a new medical era.

So it stands to reason we'd be making inroads to the hunt for treatments that could make illness and injury a thing of the past.

With disease exacting an unknowable burden of human suffering--not to mention an economic toll estimated in the hundreds of billons worldwide--by rights, there should be a Department of Cures in every government, university and pharmaceutical company in the world. In fact, that's the system most of us believe we have. The prospect of disease is frightening; we take refuge in the idea that an army of problem-solvers is continually tinkering with the puzzle pieces of human biology until they fit together and spell "cure."

Yet anyone who's experienced a diagnosis of disease, or gone through it with a loved one, has found out through difficult experience that it's just not that easy. You can never really get a straight answer to a simple question: Who's in charge of finding cures?

Turns out the biomedical research system, as it exists today, is more like a labyrinth than a channel. You and I, together with other taxpayers, private philanthropists and investors, fund it to the tune of over $100 billion every year. But that stunning amount of money has yet to yield a blueprint for translating the science that expands the base of human knowledge into real advances we would feel in our daily lives. And the more our foundation learns about the scientific enterprise, the more deeply we understand that check-writing alone is never going to get us where we need to go. It's also going to take fixing a system that is fundamentally broken.

Broken how? Everyone can agree on the one long-term goal that matters most: speeding up the delivery of scientific solutions for the diseases that ail us. It's the short-term goals and rewards that don't seem to play well together in the sandbox. A researcher in a university lab needs to focus on the kinds of incremental steps forward that get published in scientific journals, while a decision-maker in an industry setting is on the hunt for a massively profitable blockbuster drug. The philosophical and funding gap between these two short-term goals is a chasm, and so far, it's shown no signs of bridging itself.

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For bringing this article to the forum. I couldn't agree more with what was said. AS i lose my familiy, my life as it was, i remember being a drug researcher, not so many years ago. I was into central Nervous System research, and very briefly we had a "parkinsons program". What was it? It was an attempt to make an old agonist of the "Permax class" of compounds a bit better. An attempt to make it more stable from deactivation via liver passage and more penetrable to the CNS. THe whole thing would have added up to an agonist that was longer acting. Big fluching deal. We talked up the "project" like it held great potential, every monthly progress report began in a similar way. The reiteration of the statistics of PD and it's unmet needs and of course the grandiose potential of work yet to be done by us. Within four short months, the program was dropped because the powers that be could see no monetary potential in what we had developed so far, and so went on to something more "Sexy", such as "Eating disorders".
I know how the "system" works, i was part of it, a soldier down in the trenches. NOw, having a vested interest in getting better, that is , finding some relief from the ravages of PD, I see what is transpiring around us, and what i see is procrastination, false hype and "gerrymandering "of the scientists that could be useful in "making things happen" on the side of PD research. IT doesn't take a rocket scientist to "See" what's happening in the realm of PD research. So much of "our" resources are being wasted or "reassigned" into projects that will turn a bigger profit.
The foundation of the need for finding a cure for PD is a sound one . IT really does affect millions worldwide, and it really does linger on , and increase the chance that many of us will find our own cure for PD (if you get my drift). PD is living hell, a prison and a punishment that is far worse than a term spent in our houses of detention, and one for which we committed no crime to put us there.
I still see cells everywhere i look. Replacement tissue that can be bioengineered to do the job of curing PD. WHy no cells yet? what do we have to do to convince the research powers that be, that cell replacement in PD is a "no brainer".
Now, i have never minded dying. Every organism on planet Earth has to grow old and die, that is the natural scheme of things. But taking away any of the "right to human happiness" that is guaranteed in our constitution, by ignoring the honest search for A PD cure (as well as other severe life compromising diseases) is simply a mark of the failure of our society. We should have armies of trained men and women working to stop the horrible deaths from severe disease, that will become ever more prominent as our population ages, instead of sending them overseas to get killed in a war that never should have happened.
America is losing it's preeminance in the world. WE are entering a dark age, economically, socially and technically. Do any of or young ones pledge their hearts and souls to making things better for society here in America. or are they just Shanghighed (sp?) into thinking that they are protecting our freedom by killing thousands of innocent "other world" people who are in every way like us except perhaps in the way they dress or the color of their skin or the way they worship the God of all of us?
Time for some really soul searching questions, and real change in the way we serve society while in our own personal search for "the right to happiness". cs

Patient perspective - sound familiar?


"It's also going to take fixing a system that is fundamentally broken.

Broken how? Everyone can agree on the one long-term goal that matters most: speeding up the delivery of scientific solutions for the diseases that ail us. It's the short-term goals and rewards that don't seem to play well together in the sandbox. A researcher in a university lab needs to focus on the kinds of incremental steps forward that get published in scientific journals, while a decision-maker in an industry setting is on the hunt for a massively profitable blockbuster drug. The philosophical and funding gap between these two short-term goals is a chasm, and so far, it's shown no signs of bridging itself.

From the vantage point of patients and families waiting for new treatments, there's a critical need for creative, even unorthodox, solutions that could orchestrate all the players on the field--academic and industry scientists, public and private funders--working together toward the big goal. We owe it to ourselves to do the big-picture thinking about how to streamline these disparate parties' efforts into an organized system that maximizes everyone's results and keeps them moving forward toward the ultimate prize."

paula

This system will be broke as long as "We the People" refuse to fight for our freedoms -
John Henry said - give me Liberty or give me Death!
I'd rather it be LIBERTY... but liberty takes a very high toll on death.
I do not see millions of people screaming for WAR but "THEY" won't stop the WAR - WARS sells...makes bad people -rich...

Money has been put before people always?
examples:
AMGEN -GDNF

When big pharma quits putting big wads of sweaty money in the hands of the FDA / the M.D.'s the Judges, the lawyers... the "SUPREME COURT"

or

someone like/ aka the President of the U.S. quits selling "birdflu" and "terrorism"
which he may have a big wads of sweaty money invested in.or
or possibly~

when we house the indigent people who live on the park benches in DC,
most of them being ex-vets -who are scared and suffering from PTSD?

or

when doctors quit inventing diseases for BIG PHARMA? -so they can get paid the big bucks! BWOSM -[big wads of sweaty money]

so it looks like all will be well when our system is fixed or


pigs start flying?



anyone...

please do not tell me the answer is to raise "BWOSM" pronounced -"bwaa -zum" -
because that has not done much good at all, only if the money when laid on a sick person generates the body to heal...

As I go through the news items daily, it does not amaze me the huge number of cancer items I see. Probably 10 to 1 against PD, MS, etc.

No equality in the research venue. But as they say, "the squeakie wheel gets oiled" Begs the question...Are we just not LOUD enough?

I started to make the word RED, but since PINK is everywhere right now...ha ha ha...well, not really ha ha ha, but just the same.

I don't know how to do that Carolyn but you make me laugh and you are very humorous.....


The more you read the article, the better it gets. It has a very direct, honest feel to it and they are trying to reach everyone in the honest hopes for a win win. it's a different style, and interesting because it sends out the correct feel of the advanced patient who happens to enjoy what he is doing but wants to succeed. That's the interpretation in my head. Who wants to succeed at this, or at least some of it?

Did I read something in one of your articles that mentioned Debi Brooks at a cycstic fibrosis event? I love to connect dots.

Thanks for the smile Carolyn. THis seems like a high vibe day - gosh, Mike Fox has such a big responsibility. I've been sending him some pretty stupid things to try to stay on his radar screen. Finally some communcation.

Hope springs eternal. But I am much more secure when someone is in charge......oh but who is that?

paula

when I went to the White House with Congressman Evans and Dr. Gregg Gerhardt and we met the President of the U.S. in 2000 - which at the time the Prez. was Clinton, he was nice -I spoke right into his ear as he leaned way down to hear me, I asked him to pray for Congressman Evans and all of us who had PD and other diseases, because I knew if the cure came it would be by way of one good man -to whom God had whispered the cure to...
and he said - and called us by name - the Congressman and I -President Clinton said - he would pray for us...
I had been told to ask for money - but money does not cure...

It is not for a lack of trying or a lack of being heard

it is for a lack of courage, the courage to stand up and say - NO thankyou to the "BWOSM"
and do it only out of a labor of LOVE...

by the way -my sister who was third stage Metatastic Cancer of the uterous, has just yesterday come from her oncologist and he told her they could find no trace of cancer in her body - my sister did not take the chemotherapy,
she was offered the chemo made by Bristol Meyers Squibb called - TAXOL

but my sister turned it down as she had decided to use an alternative cancer
treatment - she is writing a book now...

the doctor/ oncologist/hematologist who gave her a prevoius answer of:
she had less than a couple of years to live if she did not do the chemo - the doctor was shocked they could not find any cancer at all...

we can heal, but the approach to some is too simplistic?

that way that the prevailing superpower gets blamed for the ills of the world. I have just come from a pub where there was a heated debate between Americans and South Africans as to whether the Brits were responsible for apartheid in SA !!

However the recent turns of the US do make me wonder whether the worlds largest economy is pro science. Sitting where I am, Israel seems to be punching above its weight on PD, other advances are being made by New Zealand originating scientists and the Europeans are chipping in to a limited extent, for example:

DBS - founded in France
GDNF - pioneered in the UK.
Spheramine - Israel.

This isn't some kind of competition (or racist thread), I don't care who cures me, I just wonder if the US business model, (and current political climate), will facilitate the best chance we have of a cure.

We all need to win,
Neil.

Hi Neil,

I don't think it needs to be just an American effort...he didn't say this applies to just America did he? Will read it again - it has to be read multiple times. Or maybe I shouldn't be admitting that. Could be interpreted as me having some "cognitive attending 'episode'"

Now what were we talking about?

paula