After my post, "Pediatric Cancer Underfunded?", I received quite a bit of email. The most common response was the argument of "life years lost." Here is the philosophy. Years of potential life lost (YPLL) or potential years of life lost (PYLL), is an estimate of the average years a person would have lived if he or she had not died prematurely. It is, therefore, a measure of premature mortality. As a method, it is an alternative to death rates that gives more weight to deaths that occur among younger people. Thus helping to bolster the argument that childhood cancer deserves more funding.
This argument has been used by various proponents of childhood cancer for several years. In fact, I can remember many making this argument back in 2003 when Sydney was diagnosed. Sure, it is an interesting statistic to those that want more pediatric cancer funding. Unfortunately, outside of its use as a byline in a far more comprehensive and to the point argument, it is relatively useless. It is useless because no one uses that statistic as a basis for funding. It is a fun (or not so fun) fact but it has absolutely no weight. Until you convince government and public health agencies to fund projects explicitly directed at preventing premature death, the argument really has no impact. The argument doesn't work and this is illustrated by the lack of increased funding we have seen while this argument has been emplyed as the mainstay.
It isn't convincing anyone - especially those who are of the age where those diseases are most prevalent (i.e. the decision makers) Yes, in order for this to work somebody (with a lot more credibility than a parent of a child with cancer) must show and prove to them that there is more value in funding anything based on life years lost. You have to prove that it will lead to the greatest impact for every dollar. It has to look good on a government report.
Only when that happens will this be an effective argument. Until then it is simply another statistic and we all know that you can make statistics say anything you want them to.
I still maintain that the more realistic path to increasing pediatric funding lies upstream if the NCI. There is pretty good argument for increased funding when you compare cancer research to other diseases such as AIDS (NCI budget $4.8B, Domestic AIDS spending ($20.6B - Cancer impacts 100s of thousands of lives ever year, AIDS affects about 30,000 domestically and the mortality rates are even more convincing) A few well placed political connections could re-right that ship. However, one of the biggest ways we can work within the NCI and other funding groups is by convincing them to change policy. It is unlikely for them to drastically change their funding amounts for pediatric cancer. However, it is much easier to convince them to incentivize researchers to incorporate pediatric cancer targets in their research studies. By doing this, you increase the amount of pediatric research being done, you foster research partnerships and cooperation, and you do it all without the need to change the funding structure.
Sure it is more complicated than simply adding a pediatric cancer research incentive but successes have been seen and the system has been proven to increase work in pediatrics. Now we just need to apply this success in a much larger and grander scale.
This requires some more thought and discussion but I, honestly believe that this is the direction we should be moving if we are hoping to see any real change in the near term. Furthermore, I believe this would be acceptable to the research community and the funding community.
It just makes sense. It is reasonable and rationale and it works for everyone.
I'd love to hear your thoughts.
With purpose, success can be found using the less obvious path.