Re: FC_Valley_of_Death 10.pdf (application/pdf Object)

[Guest guest]

Kathy,

I'm amazed that new PCa patients spend so much time looking for the

"next best" (unproven) treatment when there are a number of better

treatments that already exist, some with lower levels of average

serious side effects. Of course, a few of the new treatments may

eventually join the group of better PCa treatments but no one will know

which ones they are until they have been around for 10 years. Also,

while that is going on most of the better treatments continue to

improve their average 10 year disease free rate while trying to reduce

their serious side effect rates. Possibly one reason is there is no

PCa silver bullet yet, but in my opinion that is no reason for a PCa

patient to risk their future health with an unproven treatment or to

chose a less effective proven treatment.

I also don't understand how the government (and medical journals) can

ethically continue to let PCa doctors and treatment centers use

different long term PCa treatment result measures such as ASTRO

(replaced a few years ago by Nadir+2), and 0.2 ng/ml after 5 years.

The 10 and 15 year differences of these measures are way out of line

(17% and 32% according to a s Hopkins 2002 report) and continue to

deceive new and previous patients alike. All the government is willing

to say is buyer beware...

Carl

Kathy Meade wrote:

And yet, over the years, many breakthroughs like these have yet to

bear

fruit for patients. Why? Perhaps the media over-hype early discoveries.

After all, science is complex and unpredictable. We have to first fail -

numerous times - before we succeed, but we tend not to hear about the

failures. No one gets rewarded for failure.

The fact is that many basic discoveries barely get to start the journey

down

the therapeutic development pipeline. Fascinating observations and

creative

insights often get lost in translation because they lack funding,

incentives, and technical expertise to advance any further. They get

stuck

in an ever-widening gap in funding and support for the kind of research

that

moves basic science down the path toward treatments. That gap has come

to be

called by many the "Valley of Death."

To read the entire paper click the link below:

http://fastercures.org/documents/file/FC_Valley_of_Death%2010.pdf

Kathy

[Guest guest]

Kathy Meade wrote:

> ...

> The fact is that many basic discoveries barely get to start the

> journey down the therapeutic development pipeline. Fascinating

> observations and creative insights often get lost in

> translation because they lack funding, incentives, and

> technical expertise to advance any further. They get stuck in

> an ever-widening gap in funding and support for the kind of

> research that moves basic science down the path toward

> treatments. That gap has come to be called by many the " Valley

> of Death. "

>

> To read the entire paper click the link below:

>

> http://fastercures.org/documents/file/FC_Valley_of_Death%2010.pdf

....

I thought that was a very interesting article.

In my own inexpert view, I thought that the authors of the

article identified a lot of the problems and gave hints for how

they might be solved, but carefully avoided goring anyone's ox in

the process.

I'm no expert, but it seems to me that there are important ways

that the interests of the drug companies and the academic

research centers are not aligned with the public interest.

The most obvious example of this is the huge amount of drug

company research spending on " me too " drugs. Viagra is a

blockbuster drug, very useful to many PCa patients. But some

other companies, instead of creating new drugs for PCa or other

serious illnesses, invested in creating competitors to Viagra

(that work the very same way!), namely Levitra and Cialis. This

didn't even result in price competition since they all charge the

same price. They only compete in marketing.

We find gigantic investments in drugs for impotence, depression,

hypertension, excessive cholesterol, and a few other categories,

even though there are already moderately effective drugs for

those problems and the new ones are rarely better and often

worse.

I think what we need is regulations that change the playing field

in such a way that companies have high incentives to perform

research on the most serious diseases, including many for which

the market is not huge, and low incentives to produce drugs that

offer no truly new or better treatments for patients.

I think we also need new regulations that encourage or even force

more sharing of information among academics and drug companies,

more transparency, more access to raw data, and so on.

Getting these kinds of regulations is difficult because very

powerful private interests will and do oppose them while, on the

other side, the public isn't even aware that they are needed. If

anyone thinks the hornets nest stirred up by regulating private

insurers was bad, wait until they see what regulating big pharma

does.

I'm not arguing against capitalism here. I'm just arguing that

we need to jigger the system so that the capitalist pharma

organizations and the biotech and academic research organizations

can make more money by curing Alzheimer's or cancer than by

producing yet another pill to lower blood pressure or

cholesterol, or another SSRI (Prozac etc.), or another PDE5

inhibitor (Viagra etc.).

It looked to me like the authors of the above referenced article

are aware of this problem but, for practical political reasons,

chose not to delve into it too explicitly.

Alan

[Guest guest]

Well deciphered, Alan, Chuck Always as close as the other end of your computer to help address any prostate cancer concerns. " What you leave behind is not what is engraved in stone monuments, but what is woven into the lives of others. " (Chuck) Maack/Prostate Cancer Advocate/Mentor Wichita, Kansas Chapter, Us TOOBiography: http://www.ustoowichita.org/leaders.cfm?content=bio & id=1 Email: maack1@... Chapter Website " Observations " : http://www.ustoowichita.org/observations.cfm From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Alan MeyerSent: Thursday, January 06, 2011 7:50 PMTo: ProstateCancerSupport Subject: Re: FC_Valley_of_Death 10.pdf (application/pdf Object) Kathy Meade wrote:> ...> The fact is that many basic discoveries barely get to start the> journey down the therapeutic development pipeline. Fascinating> observations and creative insights often get lost in> translation because they lack funding, incentives, and> technical expertise to advance any further. They get stuck in> an ever-widening gap in funding and support for the kind of> research that moves basic science down the path toward> treatments. That gap has come to be called by many the " Valley> of Death. " >> To read the entire paper click the link below:>> http://fastercures.org/documents/file/FC_Valley_of_Death%2010.pdf...I thought that was a very interesting article.In my own inexpert view, I thought that the authors of thearticle identified a lot of the problems and gave hints for howthey might be solved, but carefully avoided goring anyone's ox inthe process.I'm no expert, but it seems to me that there are important waysthat the interests of the drug companies and the academicresearch centers are not aligned with the public interest.The most obvious example of this is the huge amount of drugcompany research spending on " me too " drugs. Viagra is ablockbuster drug, very useful to many PCa patients. But someother companies, instead of creating new drugs for PCa or otherserious illnesses, invested in creating competitors to Viagra(that work the very same way!), namely Levitra and Cialis. Thisdidn't even result in price competition since they all charge thesame price. They only compete in marketing.We find gigantic investments in drugs for impotence, depression,hypertension, excessive cholesterol, and a few other categories,even though there are already moderately effective drugs forthose problems and the new ones are rarely better and oftenworse.I think what we need is regulations that change the playing fieldin such a way that companies have high incentives to performresearch on the most serious diseases, including many for whichthe market is not huge, and low incentives to produce drugs thatoffer no truly new or better treatments for patients.I think we also need new regulations that encourage or even forcemore sharing of information among academics and drug companies,more transparency, more access to raw data, and so on.Getting these kinds of regulations is difficult because verypowerful private interests will and do oppose them while, on theother side, the public isn't even aware that they are needed. Ifanyone thinks the hornets nest stirred up by regulating privateinsurers was bad, wait until they see what regulating big pharmadoes.I'm not arguing against capitalism here. I'm just arguing thatwe need to jigger the system so that the capitalist pharmaorganizations and the biotech and academic research organizationscan make more money by curing Alzheimer's or cancer than byproducing yet another pill to lower blood pressure orcholesterol, or another SSRI (Prozac etc.), or another PDE5inhibitor (Viagra etc.).It looked to me like the authors of the above referenced articleare aware of this problem but, for practical political reasons,chose not to delve into it too explicitly.Alan

[Guest guest]

Carl P wrote:

> I'm amazed that new PCa patients spend so much time looking for

> the " next best " (unproven) treatment when there are a number of

> better treatments that already exist, some with lower levels of

> average serious side effects. Of course, a few of the new

> treatments may eventually join the group of better PCa

> treatments but no one will know which ones they are until they

> have been around for 10 years. Also, while that is going on

> most of the better treatments continue to improve their average

> 10 year disease free rate while trying to reduce their serious

> side effect rates. Possibly one reason is there is no PCa

> silver bullet yet, but in my opinion that is no reason for a

> PCa patient to risk their future health with an unproven

> treatment or to chose a less effective proven treatment.

I agree that this is a real problem. Perhaps we've been

conditioned by our experience with electronics to believe that,

when it comes to high tech stuff, newer is better.

We've seen patient demand go through the roof for newer

treatments like IMRT, protons, and robotic surgery. Lesser but

still significant demand appeared for cryotherapy and more

recently HIFU. Sometimes it can get hysterical with people

mortgaging their houses to pay for an unproven treatment that

their insurance won't cover, often for good reason.

The people who demand the latest technology read the hype

published by the practitioners of that technology and accept it

with far less skepticism than they should.

> I also don't understand how the government (and medical

> journals) can ethically continue to let PCa doctors and

> treatment centers use different long term PCa treatment result

> measures such as ASTRO (replaced a few years ago by Nadir+2),

> and 0.2 ng/ml after 5 years. The 10 and 15 year differences of

> these measures are way out of line (17% and 32% according to a

> s Hopkins 2002 report) and continue to deceive new and

> previous patients alike. All the government is willing to say

> is buyer beware...

I agree with your sentiment here too, though I suspect that, for

some not so bad reasons, government authority to regulate these

kinds of things is limited.

I'm particularly interested in government regulation to prevent

outright lying. When a clinic claims its cure rate is 95%, it

should be possible to hold them accountable for that, just as

they are when they report taxable income and expenses on their

tax returns. When a doctor says that only 2% of his patients are

impotent or incontinent, he should be ready to prove that. And

it's not a bad idea to require all doctors, or at least all

hospitals and clinics, to keep and publish standardized,

auditable, statistics on outcomes ranging from cancer cures to

hospital induced infections. That would really force them to

clean up their acts.

Alan

[Guest guest]

Alan wrote:

<snip> " The people who demand the latest technology read the hype

published by the practitioners of that technology and accept it

with far less skepticism than they should. " <snip>

We are awash with " hype " on just about any subject. It tends to diminish our

ability to filter the actual. P.T. Barnum was right.

" Il faut d'abord durer " Hemingway

Re: FC_Valley_of_Death 10.pdf

(application/pdf Object)

>

> Carl P wrote:

>

>> I'm amazed that new PCa patients spend so much time looking for

>> the " next best " (unproven) treatment when there are a number of

>> better treatments that already exist, some with lower levels of

>> average serious side effects. Of course, a few of the new

>> treatments may eventually join the group of better PCa

>> treatments but no one will know which ones they are until they

>> have been around for 10 years. Also, while that is going on

>> most of the better treatments continue to improve their average

>> 10 year disease free rate while trying to reduce their serious

>> side effect rates. Possibly one reason is there is no PCa

>> silver bullet yet, but in my opinion that is no reason for a

>> PCa patient to risk their future health with an unproven

>> treatment or to chose a less effective proven treatment.

>

> I agree that this is a real problem. Perhaps we've been

> conditioned by our experience with electronics to believe that,

> when it comes to high tech stuff, newer is better.

>

> We've seen patient demand go through the roof for newer

> treatments like IMRT, protons, and robotic surgery. Lesser but

> still significant demand appeared for cryotherapy and more

> recently HIFU. Sometimes it can get hysterical with people

> mortgaging their houses to pay for an unproven treatment that

> their insurance won't cover, often for good reason.

>

> The people who demand the latest technology read the hype

> published by the practitioners of that technology and accept it

> with far less skepticism than they should.

>

>> I also don't understand how the government (and medical

>> journals) can ethically continue to let PCa doctors and

>> treatment centers use different long term PCa treatment result

>> measures such as ASTRO (replaced a few years ago by Nadir+2),

>> and 0.2 ng/ml after 5 years. The 10 and 15 year differences of

>> these measures are way out of line (17% and 32% according to a

>> s Hopkins 2002 report) and continue to deceive new and

>> previous patients alike. All the government is willing to say

>> is buyer beware...

>

> I agree with your sentiment here too, though I suspect that, for

> some not so bad reasons, government authority to regulate these

> kinds of things is limited.

>

> I'm particularly interested in government regulation to prevent

> outright lying. When a clinic claims its cure rate is 95%, it

> should be possible to hold them accountable for that, just as

> they are when they report taxable income and expenses on their

> tax returns. When a doctor says that only 2% of his patients are

> impotent or incontinent, he should be ready to prove that. And

> it's not a bad idea to require all doctors, or at least all

> hospitals and clinics, to keep and publish standardized,

> auditable, statistics on outcomes ranging from cancer cures to

> hospital induced infections. That would really force them to

> clean up their acts.

>

> Alan

>

>

>

>

>

> ------------------------------------

>

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> 1 No Spam

> 2 Be kind to others

>

> Please recognise that Prostate Cancerhas different guises and needs

> different levels of treatment and in some cases no treatment at all. Some

> men even with all options offered chose radical options that you would not

> choose. We only ask that people be informed before choice is made, we

> cannot and should not tell other members what to do, other than look at

> other options.

>

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