Childhood Cancer's Inconvienent Truth

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?

  • 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. CureSearch 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! CureSearch lists 15 partners that have donated more than $100k at the top of our list.
  • Government (funding vs other ways to help) - Last month 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 PROFITS 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.
  • 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 CureSearch network to conduct clinical trials and report 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, 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..........

 

AWARENESS

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

Co-Founders, PAC2

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Comment by Mary Martin on June 1, 2009 at 6:50pm
I have just joined your network because I am so passionate about what you are saying Linda. I work for an incredible company whole products are produced to help us prevent major diseases including cancer. Sadly, children are entering our toxic soup of a world and we are generally not aware of the extent of the toxins around us, in our personal care products and in our food. No one wants to put a child in danger because we love them so much. I do not have a child who died of cancer but my brother died of lung cancer a few years ago. He would not listen to the information I gave him because he trusted his doctors so much. For those of you who are reading this, please go to the website of Phillip Day: www.credence.org . Phillip travels the world educating people about how no one should die of cancer and how to set up the body so that cancer can not live in it. He is also willing to speak to people on the phone (he lives in Kent in the UK - when he is home). He has books, CD's, DVD's etc. I can connect people immediately to non-toxic personal care products and powerful nutritional products. Dr Samuel Epstein, Chairman of the International Cancer Prevention Coalition and alternative Nobel prize winner is on the Advisory board of the Company I work for. The company is the fastest growing company of its kind in the world and Samuel Epstein says it has the safest products in the world. We may live in a toxic soup of a world but this company helps us to live here safely. As Dr Epstein says, we need to create a new world by making changing how we view wellness and health. I am really happy to help anyone as much as I can. You can call me in Australia on 61733958968 or email me on newheart1@optusnet.com.au or go to my website which is www.healthlifesecrets.com
I am really sorry for your loss Linda and I admire your courage in following this way of wellness.
Comment by Linda Kimball on December 21, 2008 at 10:23pm
I just reread my comment and wish you had a go back and revise button. Lots of typos, hope everyone can read through the misspelled words and most important:
Brad's website(I am completely revamping) might want to wait a few days before seeing it or if you want to know how we really feel about the care Brad received then go ahead and read it:
http://www.bradkimball.com
Comment by Linda Kimball on December 21, 2008 at 10:18pm
I lost my son, Brad to cancer. He was diagnosed at 15 and lost in 2004. When he relapsed the first time I knew his chances had just plummeted so Brad and I began to study alternative therapies. I think the government is doing a brainwashing on when they call cancer therapy alternative. Alternative should be the first course of action not poision.
If a family is fearful of therapies that will not harm the body and want to go traditional then IPT Therapy inconjunction with chemo should be a serious consideration.
Personally, after seeing 5 years of children dying horrifying death I found people that had used a cure that is natural. The man that developed the therapy paid for the first round of clinical trials himself, being on mice. It was such a success that the man, Dr. Keith Brewer, PHD. had a friend at the National Cancer Institute and it was suggested that he contact the NCI and ask them to finance the further trials. The answer, of course, was no. When Brad and I were looking for a cure we felt that Dr. Brewers Cesium was the best but also knew that we had no guidance. The protocol is not easy as I ordered it from the Keith Brewer Library. Had Brad had the guidance from a trained doctor his chances would have been greatly improved. I have been in contact with Lillian Hanke at the Brewer Library and the information about Dr. Brewer, PHD being denied by the NCI came from her connection with Dr. Brewer. The therapy makes complete sense when you study the biology of the normal cell and what happens to a cancer cell. Its all about the cell being to take in food and also excrete just as we humans do. If that cell does not excrete, it ferments and cancer is a possibly along with other diseases.I just joined your organization to see what kind of cures that is advocated. I have been fighting the government for 5 years and I had to realize that putting head to head was never going to work.
After 5 years of posting on forums and having a website for Brad I have had the pleasure of being contacted by Bobbysfund.org. They are actually doing what I decided we as parents must do for our childrren. We can no longer sit back and wait for the government to provide these compehensive cancer cures for our children and this also includes adults.
I am in the process of revamping Brads website to link with Bobbysfund.org. I have done a considerable amount of venting and now it is time to take action.
I am sending out five letters a day to attorneys that will set up an incorporated non profit organization, pro bono and then I can begin fundraising a Bobbysfund has graciously offered their help on taking action to educate parents the many faceted fight that cancer is.
Until we accept what our common sense tells us our children will continue to suffer and die.
Comment by dari mcmanus on September 12, 2008 at 9:02am
im in NYC. i will train with anyone willing, and wanting to walk , run, scream yell, throw stuff.
Comment by Leslie on August 27, 2008 at 9:01pm
I am behind you 100%....everything you've said I've said myself...as I wrote on my facebook group (Gold Ribbon Campaign For Childhood Cancer Awareness)

...........................wouldn't it be great to get the person/people involved that started the PINK ribbon campaign involved with helping out our cause???

How bout getting hold of Micheal Moore.......................? Wonder if he'd be interested in this issue!
Comment by Sweet Lily's Dad on August 17, 2008 at 8:28pm
Completely valid...how to do it? I'm not sure, but I do live in NYC and I am talking to everyone I know and trying to get somebody willing to do a story, or get some t.v. time. I'm about to go stand in Grand Central terminal, Times Square, outside the NYSE, during the rush hours and just hand out literature, perhaps set up my soapbox and rant and rave, anything to get people to , perhaps, pay us a little attention.
Comment by AJs Dad on August 16, 2008 at 8:01pm
am I crazy or is there any validity to this concept?

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