lies, damn lies, and statistics....

I asked my wife what she looked for when she went shopping. She said a good deal. So how do you determine a good deal? You compare the cost to what you get. One way of doing this is through statistics. If 1 gallon of milk is $4.00 at Kroger, and 1/2 gallon of milk is $1.90 at WalMart; you buy the $4 milk at Kroger because WalMart buys everything from China and whips its workers. No, you get my point. So, if I was shopping for value in the cancer research department, what aisle would I go down? Where do you get the most value?

There are thousands of sets of statistics available on cancer. You can easily determine your risk to develop any specific type of cancer based on age, race, lifestyle, geographic location, level of education, insurance status, if you're overweight, in a gym class, smoke, with or without leisure time activity for both with and without a high school education! The analyses are so in depth that they literally lose any meaning. Any time you try to analyze public health data, it seems the goal should be where to put future effort, i.e. funding. Where do you get the most value for your money?

Well, it depends on how you define value. Should we as a society try to cure the most prevalent type of cancer, just focus our resources on curing it regardless of age, race, lifestyle, geographic location, level of education and insurance status ? Should we try to cure the cancer that has the highest mortality? Or should we try to cure the cancer that can minimize the number person-years of life lost (PYLL)? Difficult questions and your answer I'm sure depends on your circumstances. I know what mine is.

The current answer turns out to be a mixed bag. I reviewed the National Cancer Institute's (NCI) 2007 Fact Book and its "Snapshot of Pediatric Cancer". I reviewed the Surveillance Epidemiology and End Results (SEER) website, part of the National Cancer Institute's program to make the data available to the public. Specifically, the SEER Cancer Statistics Review, 1975-2005. I reviewed the American Cancer Society's (ACS) Cancer Facts & Figures 2008. All data referenced here was obtained from these reports or CureSearch for childhood cancer data. (the average age for childhood cancer was difficult to determine, since it involves so many types of cancers. I used 10 years old although much evidence suggests younger, perhaps 7. This gives the numbers some conservatisim since they are calculated by a biased advocate) The reports contain many interesting pieces of information. One from Tables I-11 and I-13 of the SEER report jumps right out at you, the average age of a cancer patient at diagnosis is 67. The average age of a cancer patient at death is 73. Does this mean that after all this time and money we have succeeded in adding 6 years of life to the average cancer patient? Not letting that stop me, I plunged ahead.

I looked at data for the 10 most prevalent adult cancers, and compared it with childhood cancer statistics. The ten cancers are, 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

These are the data that I considered:

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

I was able to locate some 2007 NCI funding for specific cancer type. No data was available specifically documenting funding for childhood cancer. However, comparing the funding amounts for the ACS and the NCI, the funds devoted to the 10 most prevalent cancers were relatively the same on a percentage basis, with an average difference of 0.3%. So we can assume the NCI funding is relatively equal, on a percentage basis, to the ACS funding. But remember, the NCI budget is $4.7 Billion and the ACS budget is about $1 Billion.

(Last comment on ACS, they recently were downgraded to a two-star (out of 4) charity by Charity Navigator one of the country's most reputable watchdog groups. This is due to bloated overhead and poor allocation of funds. It takes them $0.21 to earn a $1 to give, and they only earned the second star because they continue to raise more and more money each year. Approximately 65% of every dollar ACS raises goes towards "programs". For comparison, CureSearch earned a 4-star rating and spends $0.02 to earn a $1. And 95% of every dollar CS raises goes towards programs. ACS has $1 billion in revenue and CureSearch $54 million. CureSearch events can be found at CureSearch Events.)

So, I put all this data into a table and also considered a nasty little acronym called PYLL. It stands for Person Years of Life Lost. In other words, for all newly diagnosed cancer patitients, the median age is 67. You subtract that from the average age of death (from ALL causes) for a US citizen today of 77, and calculate a PYLL of 10. Ten possible life years lost to cancer. Alternatively, for a child diagnosed at 10, the PYLL is 67. Now you see why it's important to know the median age at diagnosis.


Median Age at Diagnosis Person Years Life Lost New Cases 2007 5 Year Survival Rate Person Years Life Lost ACS Funding (millions) ACS Funding (%) Funding $ per PYLL
Prostate 68 9 186,320 99% 16,769 $15.0 11.3% $896
Breast 61 16 184,450 90% 295,120 $29.6 22.3% $100
Melanoma 61 16 62,480 92% 79,974 $5.2 3.9% $65
Leukemia 67 10 44,270 51% 216,923 $13.8 10.4% $64
Colo-Rectal 71 7 148,810 66% 354,168 $17.3 13.0% $49
Ovarian 63 14 21,650 45% 166,705 $7.8 5.9% $47
Pancreatic 72 5 37,680 5% 178,980 $6.8 5.1% $38
Lymphoma 64 13 74,340 65% 338,247 $11.2 8.5% $33
Brain 55 22 21,810 34% 316,681 $7.8 5.9% $25
Childhood 10 67 12,500 80% 168,000 $4.1 3.1% $24
Lung 70 7 215,020 16% 1,264,318 $14.2 10.7% $11

So again, the chart shows, the median age at diagnosis for the type of cancer, how many years are lost if the person dies (compared to average life expectancy of 77), the number of new cases and the 5-year survival rate for that cancer in 2007, the number of person-year life lost (using the 5-year survival rate), and how much ACS funds each cancer (in millions)


  1. As expected, 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, which has a 99% 5-year survival rate 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 have a 90 to 99% five year survival rate, prostate, breast and melanoma.

PPYL and Funding

The final calculation done was to divide the ACS funding amount ($) by the PYLL for each cancer type. This shows how many dollars are being spent per year of life lost for each cancer.

  1. The greatest chance at reducing the number of PYLL by curing one case of cancer comes from curing childhood cancer, with 67 PYLL.
  2. Although childhood cancer is "rare" (don't get me started!), its total PYLL is greater than or equal to 4 of the top 10 adult cancers! THIS ALONE SHOULD RID CHILDHOOD CANCER OF ITS "RARE" TAG!
  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 $24/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. Even though I intuitively knew this would be the answer, it still simply amazes me. $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, and in those cases it is preventable, public health decision makers (whoever THEY are) have put this at the bottom of the list.

Conclusions WRT Childhood Cancer

  1. Childhood cancer represents the best value in terms of saving PYLL by curing one case.
  2. As we know, childhood cancer is relatively "rare", yet 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.

What does it mean?

What do you think it means? I provided the data. I posted on the problems. To make a difference we need to be able to discuss the problem with those who make these decisions, whoever they are. Get familiar with the information. Ask yourself why it is like it is. Isn't a ground truth of America to make the world a better place for our children? Wouldn't each parent and grandparent of a childhood cancer kid sacrifice their own life? When I get to the median age of 67 and get cancer, will I be fighting for more funding so I can go beyond those extra 6 years? How about you? These are the data. I welcome your comments.


- Greg, Dad to Miranda, took the the whole PYLL concept a bit farther, getting to actual percentages of over or under funding:!B036196EAF9B34A8!773....

We love you Age

AJs Dad

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Comment by Terrance Moultrie on November 14, 2008 at 3:22pm
Thanks for the invite.
Comment by Denise Plaxco on October 16, 2008 at 2:03am
My above reply was supposed be after the comments from a lady that was inquireing about starting her own foundation, I don't know how it wound up here?
Comment by Denise Plaxco on October 16, 2008 at 1:51am
That is big task, perhaps before you attempt, find a group already started near your area that supports kids with cancer. If you can help them be stronger, then you've accomplished a lot.
To find a group you need to know what you want to do? To raise funds for research, aid to families, or both. You can become a 501c3 private or public foundation. Do not listen to any one that is negative, if you are determined you will succeed. Buy the yellow and Black Non profit for Dummies is not that difficult, however it is time consuming and you need to be assertive or find everyone you know that is assertive to help you. It can be done, but you may have a group near you that may be already up and running and they just need help from some one like you? What city state are you in?
Comment by Aimee Dickey on October 9, 2008 at 7:13pm
I don't really know much about statistical aspects of all this. All I do know is that something needs to be done. I agree with Michelle above on many of her points. My daughter also who is very aware of the fact that she is going to die, is willing to do anything to pssible save her and also save others. The day after she was DX with a DIPG the doctors said that there was a new clinical trial that she could try and since she was 11 at the time she had to sign the papers. When the doctor asked her if she wanted to try it, she told him that I always told her it is better to try and fail then not to try at all. She was never able to try it because she was on a ventilator 3 day's later. After that I was told that I had no options other then radiation. No chemo, no surgery, no more trials, no nothing. WHY!!!!!!!
Comment by Vernita Carlson on September 8, 2008 at 2:24am
I'm new to this forum, but I can tell you this. The money allocated is pretty much based on politics. Several years ago, breast cancer was a big issue. The survival rate wasn't that great, and women's groups got the message out in a big way. The claimed discrimination by everyone from politicians to drug companies to researchers, because it was a cancer that only (at least mostly) affected women. And their voice was heard. The funding came, and with it the tide started to turn. Now breast cancer has a pretty 5-year high survival rate.

Next came the men calling discrimination on their part, regarding prostate cancer. Again, politics being what they are ... the loudest get what they ask for. It's also two of the things most adult men and women can relate to - breasts and prostate - so politicians feel by feeding money into these areas, they are also buying votes in a manner of speaking.

When it comes to childhood cancers, not only are you dealing with a smaller group of sufferers, but you are also dealing with non-voters. And yes, they will vote someday, but that may be some other politicians headache.

As well, you have a number of childhood cancers to allocate to. Do they just give a set amount to "childhood cancers?" Or do they give amounts to each of the individual cancers - which would really be the fair thing to do!? Even with cancers that seem to be the same in children and adults, the treatments don't always work the same. Often children can take a much more aggressive treatment than an adult can. They recover faster and are willing to take more without complaint. So really, all the children's cancers need to be treated as separate entities.

That brings us down to funding ... and I think the only way to get more of that is to go the way the women did when they wanted better funding for breast cancer research, and the men did to get funding for prostate cancer. We have to be loud, and very public! The general public needs to see the statistics. They need to know that our kids are being used and shafted! They need to know how our doctors are doubling as dedicated researchers ... and even with all of these disadvantages, have made tremendous strides in the treatment of many of the childhood cancers. And they need to see our vision, that with more funding and research, even greater success can be attained, and more of these kids will be successfully treated, reach adulthood and become contributing members of society! Many of them already are ... my son is 13 years out of treatment for ALL - T-cell, and is studying to be a Petroleum Engineering Technologist.
Comment by AJs Dad on September 3, 2008 at 11:48am
yeah i kinda knew that Steve, I was thinking 7, but as "disclaimed" in there somewhere, I used 10 since I consider myself a "biased examiner" of the numbers (i mean they are statistics and I knew the answer so to speak)........but thanks for the backup on that
Comment by Steve G-Zak's dad on September 3, 2008 at 11:40am
Interesting stats Bob. I haven't had a chance to explore the links you left in your post but one thing I'd like to add is that the median age of these kids at dx is actually closer to 6 years old, not 10, which drives the PYLL number you reported even higher.
Comment by Stacey Pruitt on September 1, 2008 at 9:10pm
I have been wanting to create a foundation. Something along the lines of the Susan G. Komen foundation for breast cancer, only I want it to be about childhood cancer. That foundation brought recognition to breast cancer. Virtually anywhere you go you can buy pink ribbon items. I want people to know what gold ribbons are for, and I want them readily available, with funds going somewhere like CureSearch. I just don't know where to start.
Comment by Michelle on September 1, 2008 at 6:22pm
I agree with most all points made in this posting. However, I am new to message boards so I'm sure I can't really add much in the way of many statistical advice or comments. I do know that I am an angry parent when it comes to the death of my son, who had an "adult" brain tumor. I would just like to take this opportunity to vent!! He was not given the same chance as an older man in his 60's due to the obvious 'ethical' reasons ~ he was just a child! He had as much of a chance as anyone living in 1983 for survival with his brain cancer type (GBM) as anyone today. They basically still use the same treatment options used to treat this brain tumor for the last 25 years! I didn't know this, but even if I had known,nothing would have been tried because no one will take a chance on killing our children with the unknown. When our family was thrust into the cancer scene, just as most parents when they have a child with cancer, we had NO clue what we were up against. My son gladly participated in 2 different studies, but only the ones deemed "safe" for children! So, they must continue to try new things with adults in this case. Not sure about the other ones. The thing that bothers me the most, is this type of brain cancer is no longer 'rare' in children! My son would have gladly given his life to try something that possibly could have saved his life, if the treatment had worked. He was given 18 months with the last occurrence, and we only got 6 months. He knew he was going to die, and he was only 14. I would have consented, given the options we were given.
Comment by AJs Dad on August 31, 2008 at 11:37am
well I think we have now identified the Captain of the PAC2 debate can't be the same Yale that our President attended is it?

(this after googling many terms used above)
On your evaluation of defining overall societal well being, frankly, isn't one of the country's founding principles to protect those who need it most? For example, we would/may no doubt re-spend billions again re-building a city that should be abandoned because of the basic fact that it is built below sea level, ocean levels are rising, and it is in the direct path of major hurricanes with a frequency that seems to be increasing. The idea being we are "helping" those who need it most. Science and cold hard facts have little to do with funding. Everything is politics. That's a cold hard fact.

If it wasn't, the idea of PYLL would be much more public. But you do not see the calculus of PYLL in any ACS literature. You don't see it in the LLS literature. I think it is a valid argument that CureSearch should use in its literature. I believe that if the majority of parents/voters in the country had the opportunity to allocate funds, the percentages would be different. How do they fight for this? Due to the rarity of childhood cancer, small groups like this exist. Many of them, but still relatively small in the big scheme. That's why one of my goals it to band them together. To be louder. To be noticed.

The reading I have done on how rare diseases are "beaten" concludes that it takes a public-private organization (ie CureSearch) supported by parents and funded primarily by private sector. THAT is where CS will/should be focusing efforts. I have many many thoughts here.....for example, this.

Lastly, to follow up on Scotts comment above, like Scott, it offends me to no end that the ACS uses bald cancer kids when it's funding time. THAT is why PAC2 will not support the ACS, LLS or other NON-CHILD SPECIFIC groups. Sorry, that's just the way it is. And before you participate in a Relay for Life or an ACS or LLS fundraiser, check into where the money goes......just as easy to do this specifically for childhood cancer.

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