Saturday, November 15, 2008

I'm Confused

The presidential advisory panel on cancer said Thursday that "The U.S. government needs to step up funding for cancer research, which has stagnated in this decade". The report detailed "troubling trends", including insufficient funding for research into new ways to treat and prevent cancer.

"Use of clinical trials, basic research, clinical research -- we must have adequate funding" Dr. LaSalle Leffall of Howard University, who heads the President's Cancer Panel. The report stated that U.S. biomedical research "is being starved of funding at a pivotal juncture".

Federal funding for the National Cancer Institute has stagnated since 2003, declining 16.5% when accounting for inflation. The NCI received $4.8 billion in the 2008 fiscal year.

"This means fewer research grants are made and those that are awarded provide less funding than requested by researchers, forcing scientific projects to be scaled back", the American Cancer Society said. "Fewer clinical trials are being started and fewer patients are being enrolled in cutting-edge studies than just a few years ago", the report said.

But now I'm confused.

The report explained very effectively the following points:
$572 million is insufficient for breast cancer research.
$296 million is insufficient for prostate cancer research.
$258 million is insufficient for colon cancer research.
$226 million is insufficient for lung cancer research.

I believe all those statements. But here is where I get lost. Not one word was mentioned that the 12 major categories of childhood cancer receive an average of $15 million each. I guess someone feels that is sufficient.

And if you think this is enough, consider this. These are MAJOR categories. There are many cancers within them. Just consider Burkitt's Lymphoma. $15 million goes to childhood lymphoma. That money is divided 60%/40% between Hodgkin's and Non-Hodgkin's. Then the 40% Non-Hodgkin's money is divided between 11 different Non-Hodgkin's Lymphoma's. Burkitt's is one of the 11. And there are three different types of Burkitt's, plus a "Burkitt's-like" lymphoma that has not been categorized.

Then comes the deadliest form of Burkitt's - Burkitt's Leukemia (which Tyler also had). But it usually only presents itself in one type of Burkitt's, and only in stage IV. Funds are long gone before researchers get to that point.

How do you find a cure cancer with this type of funding? 1,000's of our children are dying, but they still call childhood cancer "rare". Due to lack of funding, they clustered treatments together into generalized protocols. Hospitals make treatment decisions and insurance companies make payment decisions based on statistical averages of generalized data. Specific disease's are ignored. Due to funding, the decision has been made to treat them all the same...in some sort of McDonald's Hamburger like assembly line. One-size-fits-all. While our children suffer and die.

And pharmaceutical companies will not do it on their own. They see adult cancers as far more profitable. Childhood and teen cancers, individually, are too low in numbers. The potential "customer base" of childhood cancers makes no sense on the balance sheets.

I do not understand everything, but there are a few things I do understand. I understand we are the greatest country in the world. We are the richest country in the world. And we spend more money on health care than any country in the world.

But last year my son was diagnosed with Burkitt's Lymphoma - Leukemia, and I also understand this...

  • France developed what is currently the best treatment for Burkitt's.
  • France developed the most effective treatments for most childhood blood cancers.
  • England is showing the highest success rates in childhood cancers.
  • England and Australia have made significant advances in understanding teenage cancers.
  • Australia is showing the highest survival rates in Burkitt's.
  • Germany is making the greatest advances in childhood cancer drugs.
  • The single most effective drug for Burkitt's was "stumbled over" by a private pharmaceutical company in Europe, looking for new uses for an out-dated arthritis drug.

Maybe I'm just not smart enough to understand the medical world. In my world of business, I look at cause and effect. If I am not getting my desired results, I find the cause and change it. If that doesn't work, I change it again, with focus and discipline, until I succeed. Absurdly simple, but it works.

Here are the results of our current childhood cancer funding:

  • The cause of most childhood cancers is still unknown.
  • Cancer is the #1 disease killer of children and teens.
  • 1 in 300 children will be diagnosed with cancer before the age of 20.
  • There has been only one new cancer drug for childhood cancer in the past 30 years.
  • The current strategy of treating childhood cancer is mega-doses of "hand-me-down" adult chemo drugs, most of which have proven to have life long side effects on developing children and teens.
  • The number of children and teens diagnosed with cancer has increased every year for the past 25 years.
  • There are currently 30,000-40,000 children fighting cancer in the U.S.
  • 12,400 children are diagnosed each year.
  • 3,000 will die of cancer each year.
  • For reasons not fully known, teenagers experience the highest rate of secondary cancers as a result of the high dose chemotherapy treatments.
  • At the time of diagnosis in teens, the cancer has already spread in 80% of the cases. That is compared to the 20% in adults.
  • Teenagers have the lowest survival rate of any age group under 70.
  • A 5-year study at Children's Hospital Pittsburgh concluded that teenagers lack of access to clinical trials is the #1 reason for their low survival rate.
  • A study from the Teen Cancer Institute reported that a lack of understanding of teen cancer by pediatricians results in an average delay of 9 1/2 weeks from initial symptoms to correct diagnosis. This is most common in bone, brain, and blood cancers.

I do not like these results. And the cause is lack of funding. There is a cure out there. We just need to find it. The answer is funding...with discipline, focus, and commitment. It's that simple.

Or maybe I'm too simple-minded. Maybe I'm just not smart enough to understand.

Maybe.

"How many deaths will it take till we know, that too many people have died?" --Bob Dylan

3 comments:

Austin said...

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aquarela said...

Thanks so much for your blog, your sharing what Tyler and you as a famíly have been through has made a huge impact I am sure.

Since being diagnosed with sporadic Burkitt's Lymphoma last April I have felt motivated to do something to help and I see that it is more important to channel my efforts to pediatriic cancer, where more help is needed. I am 60 years old and very grateful that my daughter and son's childhood was happy and healthy. I see you mention in this post meaningful advances in France and the UK, could you vive me some names?

Tomorrow I will have my l ast chemo treatment (R-CHOP) and I will be able to focus more on what I can do here in Portugal and possibly link up with other countries in Europe. I am starting on my own blog now (that is how I stumbled on yours, which has been truly inspirational).

Again, thanks so much for sharing.

Alma Wright, Cascais, Portugal

Anonymous said...

Thanks so much for your blog, your sharing what Tyler and you as a famíly have been through has made a huge impact I am sure.

Since being diagnosed with sporadic Burkitt's Lymphoma last April I have felt motivated to do something to help and I see that it is more important to channel my efforts to pediatriic cancer, where more help is needed. I am 60 years old and very grateful that my daughter and son's childhood was happy and healthy. I see you mention in this post meaningful advances in France and the UK, could you vive me some names?

Tomorrow I will have my l ast chemo treatment (R-CHOP) and I will be able to focus more on what I can do here in Portugal and possibly link up with other countries in Europe. I am starting on my own blog now (that is how I stumbled on yours, which has been truly inspirational).

Again, thanks so much for sharing.

Alma Wright, Cascais, Portugal