Many lessons have been learned through this process, but the one that has been the most perplexing is the funding of childhood cancer research. It truly made no sense to me. That is, until I finally realized it is a business. In the business of cancer, thereare some cold and hard realities.
Lucas Goldbaum is 12 years old, and has an inoperable brain tumor (diffuse intrinsic pontine gliomaon) that effects 100-150 children a year. Few live to their next birthday. Cedars-Sinai Medical Center in Los Angeles believes they are on the verge of a cure for Lucas and the other children. But they are out of funding. The family must raise $250,000 by December 31st to get the process started. In the United States of America, how does this happen?
First, we must understand the facts. There are a lot of kids with cancer, but there are also a lot of childhood cancers. Individually none of them are "common". Look at these numbers compared to adult cancers.
Annual new cases of lung cancer...215,020
Annual new cases of prostate cancer...186,230
Annual new cases of breast cancer...184,230
Annual new cases of colon cancer...148,810
All 12 classifications of childhood cancers combined ....12,500 new cases per year.
That is 12 classifications, 90 different types of cancer, all unique to children. The most common, A.L.L., is "only" about 800 new case per year. The result: There is no way to get a sufficient return on investment, so the kids are being ignored. If you do not believe me, just follow the money.
1. Pharmaceutical Companies:
THE REALITY: Pharmaceutical executives are answerable to share holders demanding greater profits and market share. The average cost to bring a new cancer drug to market is $1.3 billion. The executives must decide where to invest their research dollars. Invest in the drug with a few hundred potential "customers" a year, or the one with 180,000 - 200,000 new "customers" a year? You know the decision they will make.
Now before you rant and rave about greedy pharmaceutical executives and their salaries, answer this question. Which company stock would you buy? The company spending billions on research to save 50 kids with Burkitt's Lymphoma, or the company with a cure for 215,000 lung cancer patients. Or how about the one finding the cure to impotence, baldness, smoking, obesity, aging, or wrinkles? What would you honestly do?
Could it be true that Viagra is the greatest medical discovery of our decade? Economically speaking -- Yes. Very sad, but very true.
According to the National Academy of Science report (2005) “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.”
THE RESULT: In the past 25 years, only one new drug has been created for childhood cancer. It is known that children can survive much higher doses of chemo than adults, so the primary treatment has been to give the kids mega-doses of outdated "hand-me-down" adult chemotherapy. Until recently, no funds have been given to study the long term effects of high dose adult chemo on young developing bodies. Recently the first major study was published, showing that 2/3's of these kids are suffering life long side-effects. But that data is likely to change nothing...there are simply no other options available.
In the case of Burkitt's, Rituxin is the only significant drug improvement in many years. Rituxin is an old arthritis drug that, by accident, was found to increase the effectiveness of chemo on many blood cancers. This technique has become very common. Due to lack of funding, childhood cancer researchers have been forced to "cut and paste" out dated adult treatments, rather than discovering new treatments customized for the kids. The pharmaceutical companies, always looking to broaden the market of their existing drugs, are supporting this. But since results are usually only recorded for 5 years, the long term side effects are still largely unknown.
2. The Government:
THE REALITY: The government bends to public demand, and more people are effected by adult cancers. The National Cancer Institutes received $4.9 billion in federal funds, of which only about $180 million is given to childhood cancer. That $180 million is divided between all 90 different types of childhood cancers...$2 million each. And remember,it costs 1.3 billion to create a single new cancer drug. The NCI states research priority is given based on achieving "the greatest good", and no individual childhood cancer is common enough to warrant their attention. Bob Piniewski with People Against Childhood Cancer has has done a great job graphing the devastation of childhood cancer based on number years lost, rather than people effected. But nobody at NCI is listening.
$900 billion for the banking bail out, $25 billion for the auto makers bail out. $5.1 billion was spent this year on the November elections. Our government spends $170 million a year distributing free condoms in 3rd world countries. And $180 million goes to childhood cancer research. Some have told me I am not being fair, that I am comparing apples to oranges. Well, maybe. But just for the record, apple and orange growers receive $440 million in federal funding.
THE RESULT: The lack of funding causes research facilities, universities, and hospitals to alter the direction of their work. They must follow the money. If you don't believe me, use Burkitt's as an example. Tyler, and the others with Burkitt's mentioned on this blog, had a type of Burkitt's called "Sporadic". But as I chased down promising new research, I found it had all been redirected to an extremely rare form of Burkitt's call "Immunodeficient". If Burkitt's is being ignored because it is rare, then why is the even more rare Immunodeficient Burkitt's getting 85%-90% of all research funds? The answer is always in the money. The Immunodeficient type shows up in AIDS patients, and AIDS research receives $1.6 billion in Federal funding. And none of the research helps anyone else. Immunodeficient is very unique, and virtually all the research is into how it reacts with other HIV drugs. Our children, again, are pushed aside.
According to Greg Reaman, MD, chairman of the Children’s Oncology Group. “Children will never represent a market force.” Children’s Oncology Group is the world’s largest childhood cancer research organization. Due to cuts in Federal funding, they have been forced to put 20 new studies on hold and decrease enrollment in new clinical trials by more than 400 children.3. The Cancer Foundations:
THE REALITY: They are classified as "non-profits", but they are still a business. And their business is raising money. On average, 20%-30% of funds go toward fund raising activities. The "big dog" in this arena is the American Cancer Society. 22% of all funds go toward fund raising. John Seffrin, Chief Executive Officer, earns $619,551. They currently hold $1.4 BILLION in assetts, money they have raised and not distributed to programs. In 2006 alone they keep a surplus of $88 million... 22 times the amount they awarded to all childhood cancer programs.
These organizations fully understand that most of their funding will come from people affected by cancer. Therefore their attention is on the cancers that effect the most people. It is a business decision.
The most successful of all grass roots organizations is Susan G. Komen for the Cure, which has raised over $1 billion for breast cancer research. This is a truly outstanding organization. But again, they must chase the money. A recent study from the University of Arizona found that young girls who receive chemo are 25 times more likely to develop breast cancer before the age of 40. It is also known that adolescent and young adults (ages 15-39) have the lowest survival rates in every type of cancer. But no money is given to research why this is true. Does anyone know how old was Susan Koman when she was diagnosed with breast cancer? 33. How old when she died? 36. So how much does the organization give to young adult cancer research? None. It is not their target market. They have to follow the money.
THE RESULT: Only 2.96% of the American Cancer Society goes to research funds to childhood cancer. This number is typical of other cancer foundations. The ACS offers contributors the option of "Donation Designation" for breast cancer research, prostate cancer research, colo-rectal cancer research and lung cancer research. There is no mention of childhood cancer. In fact, about the only place you see a focus on kids in the use of photographs in their fund-raising brochures. Their marketing folks make sure about 60% of the pictures are of bald kids with cancer. That's business.
I am not attacking these foundations (so please do not send me hate mail). They do a great job, especially in the areas of information and awareness. I have supported Race For The Cure and Relay For Life, and will continue to do so. In 2009 I will run another marathon with Team In Training. They are good organizations doing great work. They are fighting cancer and saving lives. I am only making one point. Our children, again, are getting the table scraps in the world of cancer research.
In addition to the "big boys", there are great organizations that focus exclusively on childhood cancer. CureSearch, is the largest, with 95% of all funds going to research (and a CEO who accepts no salary). Candlelighters, Alex's Lemonade, and many more are helping the cause. Unfortunately, the organizations that are focusing exclusively on childhood cancer seem to never be able to generate funds like the "big boys".
So this is where we are in childhood cancer research, with potential cures sitting on the shelves waiting for funding.
So now what do we do?
1. First and foremost is awareness. Everybody needs to spread the word about what is going on.
2. Call, email, write your elected officials. They do respond to numbers.
3. When supporting causes, make sure you know where the money is going.
4. Public/private partnerships need 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 they see the value because of large public awareness and support.
5. The National Cancer Institute should assume responsibility as the developer of last resort for agents that show promise only in children if companies decide not to proceed with full-scale development (there's a concept -- government responsibility). This will only happen when write, email, vote, scream, yell, and demand our elected officials to act. The special interest lobby's have more money, but together we have more votes. And votes are more powerful than money.
6. 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!
Lucus Goldbaum needs $250,000 to begin experimental treatments for a tumor on his brain stem. You can contact his mother, Jen Simpson at (Cell) 202 569 -9180 or (Email) firstname.lastname@example.org