Doing the usual weird web browsing, we came across this story, Little Patients, losing patience: Pediatric Cancer Drug Development - Few advances in drugs for childhood cancers have been made in recent years...


That one led to a National Academy of Sciences (NAS) report from 2005. The NAS is recognized gathering nationwide experts, looking at a problem, and making good sound recommendations. Anyway, this particular report is titled “Making Better Drugs for Children with Cancer”. Its a free download you just have to enter your email. We encourage you all to download and read it, it is amazing.  Here is the full report.


This is an excerpt from the Executive Summary:

“From the point of view of companies developing drugs and other agents to treat cancer, the pediatric cancer drug market is often well below the radar screen, and typically it has not made business sense to invest in research and development for these cancers. Many drugs developed for adults have been found effective in children, in large part because most have a generalized affinity for cancer cells. The dark side of this characteristic is that noncancerous tissue may be damaged in the process, causing the well-known adverse effects of anticancer drugs. But in fact, the biological and clinical characteristics of nearly all childhood cancers differ substantially from adult cancers. Over the past few years, differences at the molecular level have been documented for all the major childhood cancers, and herein lies the promise: the molecular abnormalities represent a place to start searching for drug “targets.” (This is the latest route research is taking - individualized treatment programs) Cutting-edge science notwithstanding, market forces are not sufficient to drive the process and bring to the bedside new drugs for children with cancer. Because so much of the technical capacity for drug discovery and development for pediatric cancers already exists—much of it supported by the National Institutes of Health (NIH) intramurally or extramurally, as well as in the private for-profit sector—it is possible that these drugs could emerge from an alternate pathway. Specifically, a “public–private partnership” could knit together the pieces in a virtual research and development (R&D) network. Networks such as this are relatively new, but are working well for cystic fibrosis, tuberculosis, malaria, and other neglected tropical diseases. The resources already in place for pediatric cancers are poised for this development.”


A key sentence there, and described in great detail in the report, is "Networks such as this are relatively new, but are working well for cystic fibrosis, tuberculosis, malaria and other neglected tropical diseases." In other words, while curing these diseases makes no "business sense", existing public-private partnerships have been developed which successfully advocated, funded research, established clinical trials, lobbied for incentives for biotech/pharm co's in the form of tax credits and patent/copyright extensions, and funded and performed basic R&D of of new chemistry.


Just so you know, they are not alone, others write about it too!  Picking Up the Pace - Igniting progress in the cure of children wit... To paraphrase - “we must enlist friends and families of children with cancer to secure funding for research”!


So, how did it work well for cystic fibrosis, tuberculosis, malaria and other neglected tropical diseases? What's our "model"? Like Butch says to Sundance..."who are these guys?". Again, quoting the report, and this is important - "Most CF Foundation funding comes from individual donors, with additional support from corporations and others". So where does that leave us? Well, Children's Oncology Group manages the research network, we are doing our part by selling lemonade, getting shaved, etc. walking/running, selling cookies etc...What's the missing component? Money. From corporations and the government.


So what are the stumbling blocks there?

  • Public Relations ---> Corporate Donations - The public is aware of Susan G. Koman and pink breast cancer ribbons. They have seen cute Katie Couric and her little camera for colon cancer. Lance Armstrong fights for dollars. The childhood cancer community does everything it can, but it’s a tough battle. Get this - SG Koman has to have a SEPARATE webpage for its million dollar donors, there are 27 of them!
  • Government (funding vs other ways to help) - Last month (Sept 2008) was important because the Conquer Childhood Cancer Act was signed, and it is a good thing that many wonderful people, many of you, fought hard for. Every year, it can (assuming the appropriations are approved) provide the same amount of money for researching a cure that we spend in 2 hours in Iraq, the same amount of profit that ExxonMobil makes in 5-1/2 hours. Hmm, maybe the government is not the best place to get funding? Truly, I believe we would be better served with innovative approaches from the government in the form of extended patent/copyright royalties or tax breaks and other means to stimulate private research. [Update - the Conquer Childhood Cancer Act was barely funded.  The Creating Hope Act stimulates private research]
  • Business (aka I can’t make money saving your kid) - Unfortunately, childhood cancer is considered “rare”. (My definition of rare is - #1 – happening to you or #2 – happening to someone else) Since it is "rare", it does not make economic sense for pharmaceutical companies to invest research dollars, since the return-on-investment is not there. And that's where #2, government incentives comes in. That, plus tying pharmaceuticals into the COG network to conduct clinical trials and collaborate on results, give these researchers the feedback they need to advance.

So what does that mean to us? It means that our individual efforts to raise money, shave heads, sell lemonade, donate cash, race, or whatever we do is needed. It means that the collaborative "model" is right and has worked elsewhere. It means that private pharma should not be counted on to fund everything we need. Most importantly, it means that support from the government and corporations is needed. So how do you get corporations to support our cause?


Think about the word green, actually, now its Green. When did you become aware of Green and what it means? If you are like the average American, my guess would be sometime after Al Gore and "An Inconvenient Truth". Be honest (give him his due). So, compared to pre-An Inconvenient Truth, how many times per day do you see or hear Green? Exxon is Green. Chevron is Green. WalMart is Green. Landfills are Green. To be any other color is virtually unthinkable and clearly un-American. I know these companies knew green before it became Green. So then why NOW are you seeing TV ads of how they are R&D’ing alternate energies, sustainability, climate change, energy efficiency? What changed? I swear I can put it into one word..........


Now, we, the customers, know what Green is too. Because it's in the news, it’s the latest cause, the watchdogs are calling out the bad guys, gas is $4, etc. And where do we hear and see and read about it all? Media & TV. Those ugly words I love to hate. But my hatred for cancer runs deeper, so we need to use them, the media to create that AWARENESS.


We truly believe it is within our power to have our own "An Inconvenient Truth" for childhood cancer. We further believe that will empower us to obtain both the publicity needed for childhood cancer and the funding from corporations to find a cure. Maybe our Inconvenient Truth is not a single event, but a series of events. Maybe it starts with a TV show. A video on U-Tube. Someone’s Caring Bridge story. A book. Some lemonade. Who knows?



So we are trying with PAC2 and the Childhood Cancer - Another Inconvenient Truth Petition. Imagine them receiving 2 boxes full of signatures from an organization of 1,000's of parents of cancer kids that has supporters like CureSearch, Alex's Lemonade, St. Baldricks, Rally, Candlelighters and others? It will make an impression. Saying, we want a telethon or a Kids Stand Up to Cancer or a special show [update - see 46 Mommas]. We won't stop until they listen.

We just have to keep going. There is no going back. We can't un-know what we know about childhood cancer. We have to spend the time, make the effort, send the e-mails, we each have to DO SOMETHING to make it "Inconvenient". Because we know its already the "Truth". Thanks, we're done.



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awesome find. i find you do all the work , and i copy and paste your forum entries. of course i also do as im told.
WHOOT 1700+ members. if everyone gets an additional 100 signatures, we would blow it out of the water. i didnt join TOO TOO long ago and you have gained over 1000 more. LETS ROLL.

i want this show so bad!!
I have read about these inconvenient truths and totally agree for the need to create awareness and more funding for research.
My son is currently receiving an orphan drug called MTPPE, which was first created about 20 years ago. It is still in the experimental phase. This drug is designed to get the body's immune system to recognize osteosarcoma cells and destroy them. Drugs like MTPPE must continue to be developed and become available to the consumer. This can only be done through funding and research. How many more children must suffer?
Thank you,
Angie Giallourakis
Anyone who has held their baby's head as they puke in the bucket on the way to their oncology appointment, leading to the 16th blood transfusion in 9 months, knows that this really is an "Inconvenient Truth". The "Truth" that most people don't understand & can't handle, because their worst nightmare would be that it happen to their children. Let's pave this yellow brick road to a CURE for all childhood cancers!
Yeah for your advocacy!! I live in upstate NY where, as I speak, there is a superfund "field" that is right now being cleaned up for the ever known PCB's in our area. Leave the damn PCB's in the Hudson River. Don't bring them above ground, to burn them in that giant smokestack that runs 24/7, then emit the waste back into MY AIR!!!!! Then try to convince me that the "cleaned and fitlered" PCB's that are being burned are now "clean!! No wonder there is such a high incidence of cancer, (children and adults) in this area!!! My child has suffered enough with ALL leukemia. Like one of the other mom's said, try holding your child's head in the bucket to puke on their way to yet another chemo treatment, or blood transfusion, because the adults, especially the government adults, could give a damn about a child's health or future!!!! Amen and kudo's to you for your work on this subject, especially since you know what I am talking about because you work with those phony superfund sites, that just creates jobs for people, and WASTES tons of taxpayers money instead of using it on research for a cure!!!!


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