But there is an additional obstacle to curing childhood cancer, one that breast cancer does not face. The obstacle is a math problem, created by the business and politics of cancer.
First we must appreciate the incredible amount of money needed to research for the cure. The National Cancer Institute estimates that the development of a new cancer drug requires an average investment of 15 years of research and $1.3 billion in funding. And in the end, less than 8% of these drugs ever receive final FDA approval (compared to 20% of non-cancer drugs).
So who is going to pay for all this? That is where we slam head-on into the ugly reality behind the business and politics of cancer.
THE BUSINESS OF CANCER
I apologize if this comes across very callous, but this is how it all works. A pharmaceutical company will always look at their potential return on investment. They must recoup their investment, plus their projected profit margin, from the potential "customer base" of cancer patients. When they look at breast cancer, as an example, they see 200,000 people diagnosed each. Treatments and relapses can continue for several years, providing over a million "customers" at any given time.
But these companies see a different picture as they look at childhood cancers. First, it is not one cancer. There are actually 12 major categories of childhood cancers, encompassing over 100 different cancers that are unique to children. Cumulatively, there are 12,500 new cases per year. But with all the variations, any specific drug would have a "customer base" of only a few hundred. The very ugly truth is that there is no financial return on the investment.
Here's a 2x4 right between the eyes...according to a National Academy of Science report, “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. The biological and clinical characteristics of nearly all childhood cancers differ substantially from adult cancers. Market forces are not sufficient to drive the process and bring to the bedside new drugs for children with cancer.”
That is the business of cancer. Saving our children "has not made business sense". Is there any wonder that the industry considers Viagra to be the greatest pharmaceutical accomplishment of this century?
THE RESULT: There has not been a single pediatric cancer drug developed in the past 25 years. Instead, the pharmaceutical companies have used kids to recycle outdated chemo drugs. Since it is known that children can survive higher doses of chemo than adults, the primary treatment has been to give the kids mega-doses of outdated "hand-me-down" adult chemotherapy's. This has been a goldmine for the pharmaceutical companies, expanding their customer base without the cost of research and development of new products.
But what about the children? Recently the first major study was published, showing the long term effects of this strategy on our children. It stated that 2/3's of these kids are suffering life long side-effects. But report changed nothing. There are simply no other options available.
In the case of my son's cancer (Burkitt's), Rituxin is the only significant drug improvement in many years. Rituxin is actually an old arthritis drug that, by accident, was found to increase the effectiveness of chemo on many blood cancers. The lack of funding has forced childhood cancers to "cut and paste" from out-dated adult treatments, rather than discovering new treatments customized for the kids.
While to ultimate goal of business is profits, the ultimate goal of politicians is votes. Again, I apologize if this sounds callous. But it is the truth. From the moment of election, every president, senator, and congressman has one primary goal...re-election.
Look again at breast cancers. There are currently 2.5 million currently either in treatment or remission. That is a pretty good size voting block. Adding in their spouses and immediate family takes the number to over 10 million. Throw in close friends and extended family, and you are over 50 million potential voters. Lung, prostate, and colon cancers each have similar numbers.
So how do our elected officials respond to this information? They love to "talk" about childhood cancer. They unanimously approved the Cure Childhood Cancer Act during the election year. But as the election passed, they refused to fund any of the money they approved. They give only lip service to the 12,500 children (non-voters) diagnosed each year, and their 25,000 parents.
Even if you include everyone...cured, in remission, or in treatment...of every type of childhood cancer...you have 270,000 people. That is still 1/10 of breast cancer alone. Our politicians know these numbers, and act accordingly
Understanding this, it is easy to see why the stimulus package eliminating the approved $30 million for childhood cancer research, while adding $120 million to distribute free condoms in Africa (for AIDS prevention-a powerful voting/lobbying block). Whether discussing money or votes, the answer can always be found in the numbers.
The non-profit foundations review the same numbers. Like the politicians, they love to talk about the kids. Their brochures are full of pictures of smiling children with bald heads. But they also know the numbers. They know how to maintain the flow of donations. They promote and display the kids, while allocating an average of 3% of their funding childhood cancer research.
THE RESULT: Research facilities, universities, and hospitals are forced to alter the direction of their efforts, in an ongoing attempt to chase the funding. They must do so, or close their doors. My son's cancer (Burkitt's) is a classic example. The cancer found in kids is called "Sporadic Burkitt's". But as I chased down promising new research, I found most been redirected to an extremely rare form called "Immunodeficient Burkitt's". I was very confused as to why 85%-90% of the Burkitt's research switched to the very rare type. The answer is always in the money. The Immunodeficient type shows up in AIDS patients, and AIDS research receives $21 billion in Federal funding. Unfortunately the research benefits no one else, since the primary focus is on how treatments interact with other HIV drugs. Our children, again, are pushed aside.
SO WHAT DO WE DO NOW?
Last year Bob Piniewski created a Cure Childhood Cancer Petition, with a goal of one million signatures. Why would he pick a number like one million? It's impossible. That number is 20 times higher than the total number of children fighting cancer in the United States today. So why did my friend choose such a high number?
Bob set the goal for one reason. We need it. The math is not on our side. He knows we have 1/10th of the resources, and need 10 times the funding. He knows we will fail if we limit ourselves to own community. We need to pull everyone into this fight.
Every person must know the truth of this battle. We must become evangelical, bringing awareness on all levels. This doesn't mean becoming obnoxious. We are not "selling" anything. But it does mean finding every opportunity to say "Did you know..." It means sharing the stories of these kids. It means pulling more and more people into the fight.You see, childhood cancer is different than other cancers. It's about more than the loss of life. It's about the loss of potential, the loss of the future. It is about children losing 50, 60, or 70 years of life. It affects us all.
I don't mean to belittle others fighting cancer. My grandfather lost his life to cancer in his 80's. My mother-in-law is currently fighting cancer in her 70's. But they would both agree that it is different than my 15 year old son having cancer.
There are currently 40,000-50,000 children fighting cancer. The pharmaceutical companies and politicians see that number as insignificant. We need them, so we must swell the numbers. We must spread the message. We must tell the world.
Adding one million people to this fight is a big challenge. Proceeding to ten million will be a bit harder. But as Lance Armstrong says, there are only two options when facing a challenge: Lay down and die, or Fight Like Hell!
As for me...I choose to fight.
So how do we do this?
- Send out Bob's petition. Set it out at work, take it to the grocery story.
- Spread awareness. Everybody needs to spread the word about what is going on. Talk at work, at school, at church. Repeat the stories of these kids. Create a blog. Send letters to the papers. Let people get to know these kids that are fighting for their lives. Every week I send out an email to my database about the status of kids I am following. Do everything you can think of doing.
- Call, email, write your elected officials. Get everyone you know to do the same. Remember: They do respond to numbers.
- When supporting causes, make sure you know where the money is going. If the foundation is proud of their spending, they will gladly supply the information. If not, you should reconsider your giving. CureSearch, Candlelighters, Alex's Lemonade, St. Baldrick are just a few of the great ones.
- We need public/private partnerships to be developed, involving govt, industry, academic research institutions, advocacy groups, and philanthropies to lead pediatric cancer drug discovery and development. This will only happen when businesses and government see a specific value in doing so. That will only happen through large community awareness, and openly and actively supporting companies that support childhood cancer research.
- The National Cancer Institute must assume responsibility to complete development of treatments that show promise, but are dropped by private groups due to lack of funding. This requires that we stay educated on new research, and then write, email, vote, scream, yell, and demand our elected officials to act.
- The pharmaceutical industry, NCI, and FDA need to reduce the delay in starting pediatric clinical studies of agents in development for adult cancers. And then they need to start funding them. This will only happen when we stay educated, informing others, and demanding that our government act with accountability.
How hard is this? Very. But I have seen young men and women stare into a disease that comes straight from the pit of Hell. And I have watched them do so, while maintaining amazing love, compassion, courage. After being a witness to their strength, I believe everything is possible. There is only one question. How hard are we willing to fight?
Every man is guilty of all the good he didn’t do. -- Voltaire
Do you know that in a race the runners all compete, but only one receives the prize? Run in such a way that you may win it. --Corinthians 9:24
For the purpose of action, nothing is more useful than narrowness of thought combined with energy of will. --Henri Fredrick Amiel
Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has.--Margaret Mead
The best way to predict the future is to create it. --Peter Drucker
First they ignore you, then they laugh at you, then they fight you, then you win.--Mohandas Gandhi
The only way of finding the limits of the possible is by going beyond them into the impossible --Arthur C. Clarke
Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all--Dale Carnegie
Vision is a self fulfilling prophet. Don't predict the future. Create it.--Leland Kaiser
The brick walls are not there to keep us out. The brick walls are there to give us a chance to show how badly we want something. Because the brick walls are there to stop the people who don’t want it badly enough.--Randy Pausch
It is a hard rule of life, and I believe a healthy one, that no great plan is ever carried out without meeting and overcoming endless obstacles that come up to try the skill of man’s hand, the quality of his courage, and the endurance of his faith--Donald Douglas