Doing our usual weird web browsing, we came across this story, Little research devoted to childhood cancer drugs (CancerHealthOnline) - 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. WRT the NAS, they are recognized in my business (I manage Superfund site cleanups; you know, environmental, so no one gets cancer, just a little joke the universe is playing on me) as gathering nationwide experts, looking at a problem, and making good sound recommendations. We regularly look to the NAS for expert reports. Anyway, this particular report is titled “Making Better Drugs for Children with Cancer”. Its a free download you just have to enter your email. I encourage you all to download and read it, it is amazing.
Here 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, curing these diseases makes no "business sense" either, yet existing public-private partnerships have been developed which have 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, CureSearch is the group networking the research, we are doing our part by selling lemonade etc. What's the missing component? Money. From corporations.
So what are the stumbling blocks there?
So what does that mean to us? It means that our individual efforts to raise money, sell lemonade, donate cash, race, or whatever we do is needed. It means that the CureSearch "model" is right and has worked elsewhere. It means that the government and private pharma should not be counted on to fund everything we need. Most importantly, it means that support from 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?
Our shot at it is 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, and others? It will make an impression. Saying, we want a telethon or a Kids Stand Up to Cancer or a special show. We won't stop until they listen. OK?
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.
AJs Dad and Lori