September Is Childhood Cancer Awareness Month

Did you know that September is National Childhood Cancer Awareness Month? As the mother of children with special medical needs, I read many many Carepages and CaringBridge pages (for those of you fortunate to have never heard of these, they are free websites for people to keep family and friends updated on their or their child's fight against a variety of diseases, injuries, etc). Many of these are written for children battling a variety of aggressive cancers. And I've been shocked to read, in the last few days, about the appalling state of pediatric cancer research funding in this country.

First, please consider these sobering statistics from the American Cancer Society and National Cancer Institute.

*Each school day, 46 children are diagnosed with cancer.

*On the average 12,500 children and teens will be diagnosed with some form of cancer each year in this country.

*One in 330 children will develop cancer by age 20.

*Although the 5 year survival rate is steadily increasing, one quarter of children will die 5 years from the time of diagnosis.

*Cancer remains the #1 disease killer of America's children - more than Cystic Fibrosis, Muscular Dystrophy, Asthma and AIDS combined.

*In the U.S. almost 3,000 children do not survive cancer each year.

*Over the past two decades, only ONE new cancer drug has been approved for pediatric use.

*Currently there are between 30-40,000 children undergoing cancer treatment in the U.S.

*As a nation, we spend over $14 billion (that's with a B!!!) per year on the space program, but only $35 MILLION on Childhood Cancer Research each year.

*There are 15 children diagnosed with cancer for every one child diagnosed with pediatric AIDS. Yet, the U.S. invests approximiately $595,000 for research per victim of pediatric AIDS and only $20,000 for each victim of childhood cancer.

*Research funds are scarce as most money is diverted to well-publicized adult forms of cancer, such as breast and prostate.

*Right now, this second, somewhere in America, there are 7 children fighting for their lives who won't live through the day.

When you look at the money spent on research of cancer cures, keep in mind something known as Person Years Life Lost, or PYLL. PYLL = median age of death in the US (70) minus the average age of diagnosis for the cancer. So if you cure that kind of cancer, how many years of life are you given back to the people who get that cancer? Obviously, with pediatric cancers, you're giving them back almost an entire lifetime.

I read a Carepage yesterday ("AJsspace" for you Carepage readers out there -- AJ's dad is a passionate writer who lost his son to cancer in January of this year), which breaks down the ugly detail this way:

The 10 most prevalent adult cancers, in order of decreasing occurrence:

1. lung
2. prostate
3. breast
4. colon/rectum
5. lymphoma
6. melanoma
7. leukemia
8. pancreatic
9. brain
10. ovarian

Consider the following data on each type of cancer:

1. Median age at diagnosis (NCI)
2. Number of new cases (ACS)
3. 5 year survival rate (ACS)
4. 2006-2007 ACS funding for specific cancer type (ACS)

Observations
1. The youngest median age at diagnosis is for childhood cancer. Thus, childhood cancer also has the highest PYLL per diagnosis.
2. The highest number of new cases are for a) lung, b) prostate and c) breast.
3. Five-year survival rates for prostate, breast and melanoma are 90% or better. Pancreatic and lung are the lowest 5-year survival rates.
4. In sheer numbers, lung cancer has the most PPYL, followed at a distant second by a group with similar PYLL values; breast, colo-rectal, lymphoma and brain. Interestingly, the lowest number of PPYL is for prostate cancer, with a 99% 5-year survival rate it yet still gets 11% of all ACS funding!
5. $0.22 of every $1.00 the ACS funds goes to breast cancer. Colo-rectal, prostate, lung, leukemia and lymphoma all check in at $0.13 to $0.09. The lowest is childhood cancer at $0.03 for every $1.00 the ACS funds.
6. 37% of the ACS budget goes to 3 cancers which currently have a 90-99% five year survival rate: prostate, breast and melanoma.

When you divide the ACS funding amount by the PYLL (person years life lost), the result shows how many dollars are being spent per year of life lost for each cancer.

1. The best way to reduce the number of PYLL by curing 1 case comes from curing childhood cancer, with 67 PYLL.
2. Although childhood cancer is "rare" (another discussion for another time, but note that 1 in 330 children is diagnosed with childhood cancer), its total PYLL is greater than or equal to 4 of the top 10 adult cancers!
3. The big winners are prostate, with an amazing $896 per PYLL and breast, with $100 per PYLL. Remember, the 5-year survival rate for these two are 99% and 90%! Yet these two account for 1/3 of every funding dollar from the ACS.
4. The middle bracket consists of melanoma, leukemia, colo-rectal, ovarian, pancreatic and lymphoma, with $/PYLL ranging from $65 to $33.
5. The next lowest is brain cancer $25/PYLL. Which is surprising because it has a low 5-year survival rate and the earliest diagnosis age except for childhood cancer.
6. The next lowest funding for PYLL is childhood cancer. $24 is spent for every PYLL associated with childhood cancer. This is just 3% of the $896/PYLL for prostate, and just 24% of the $100/PYLL for breast. I just don't even know what else to say.
7. The big loser is lung cancer. Only $11 is spent per PYLL. One can imagine that since the majority of lung cancer cases are the result of a lifestyle choice (lungcancer.org), and in those cases it is preventable, public health decision makers (whoever THEY are) have put this at the bottom of the list.

Conclusions

1. Childhood cancer represents the best value in terms of saving PYLL by curing one case.
2. While childhood cancer is relatively "rare," the total PYLL from childhood cancer is greater than or equal to 4 of the top 10 adult cancers.
3. Despite that, overall funding for childhood cancer, when considering PYLL, is shockingly low. $1000/PYLL combined is spent on the two most prevalent cancers of men and women (not including lung). $24/PYLL is spent on childhood cancer.
4. Lastly, I have grouped tens of cancers into one, childhood, so funding for each specific type of childhood cancer is even less.

So this month, if you run across people in your community working to raise awareness and funding for pediatric cancer research, stop and talk to them. They've been through hell on earth with their children and are dedicating their lives to trying to make this world a better place for your children.

And if you have a spare buck or twenty, consider dropping it in their bucket. It is life-or-death important.