4.25.2006

Money, Money, Money

I'm once again lurking on a support listserv related to neuroblastoma at The Association of Cancer Online Resources (ACOR). There has been a recent flurry of emails about fund-raising for pediatric cancer research. I'm not quite prepared to go into my conflicted and complex views of how money should be distributed by the government or large, national non-profit organizations like the American Cancer Society. I'm personally struggling on that front with how to balance my own emotional closeness to the topic versus the logistics of how to distribute money given disease mortality, frequency of occurrence, age at which disease typical emerges, and etc.

What has become obvious to me though is that given how money is currently distributed for research for various cancers, the rarity of pediatric cancers and perception that pediatric-cancer=leukemia=treatable puts pediatric cancer funding pretty low on the totem pole. If the big, national organizations aren't cutting it, who is leading the charge for raising money for kids with cancer? Quite clearly it is parents of kids with cancer or parents that have lost children to one of these monstrous diseases. I have not had the strength to be part of the lead in this charge. I'm not sure I ever will. I have much respect for those who find it. In some cases I'm sure it is a form of self-therapy, but it is more than that as well. It is a burden. A huge burden. The burden on parents with children sick with any serious or chronic illness is terrible, and to throw in the burden of legitimately (at least in my estimation) feeling like it is not only your responsibility to fight to get your own kid better but that you have to be fighting to find a cure for all the kids is really just insane. This is how it works though. I guess it is just one of those harsh realities. The people out there fighting for funding and for a cure are those that have been "touched" (or punched or however you want to look at it). I wish this would change, but I doubt it will. These poor kids and families have it all stacked against them. If the burden falls on those that have been stricken with this, and getting stricken with this is "rare" in comparison to adult cancers, then the progress is inevitably going to be slow. A lot of these incredible kids and families don't have time for slow and steady progress.

Kudos to those families and friends of sick kids that get out there and fight so hard to make a real difference.

7 comments:

Deborah said...

Dear Cancer Bloggers:

This is a message to those of you who maintain/read/participate in blogs related to cancer. Might we request your assistance in an academic study about cancer blog usage?

My name is Deborah Chung, and I am an assistant professor at the University of Kentucky School of Journalism and Telecommunications. My research focuses on the use of new communication technologies and their potential to empower information consumers. Currently, I am interested in examining how health information seekers, particularly cancer patients and their families/friends, adopt blogs.

I am teaming up with Dr. Sujin Kim, also at UK, who is an assistant professor in the School of Library and Information Science and has a sub-specialization in medical informatics. She has been working closely with the UK Cancer Center to build a biorepository information system (UK-BIS) for lung and ovarian cancer samples. Together, we would like to learn about how new information channels, such as blogs, are being used by cancer patients and their families/friends — specifically we are interested in their motivations, uses and consequences of using blogs.

As approved by our internal review board (IRB) at UK, this study is an anonymous survey that does not carry any risks to cancer patients. At the same time, we believe the information gathered from this study will greatly contribute to our understanding of the adoption of new communication technologies by cancer patients. This information will in turn assist in supporting the needs of cancer patients for future information technology and service development.

Thus, we would appreciate your participation in our survey. You can find the survey here. You might get a notice regarding the validity of the certificate. If that happens, please continue to proceed.

We appreciate your time, and thank you in advance for your help.

Sincerely,

Deborah S. Chung, Ph.D
Assistant Professor
School of Journalism &
Telecommunications
University of Kentucky
dchung@uky.edu

Sujin Kim, Ph.D
Assistant Professor
School of Library & Information Science
University of Kentucky
sujinkim@uky.edu

JimII said...

He said to them, ". . . most certainly I tell you, if you have faith as a grain of mustard seed, you will tell this mountain,'Move from here to there,' and it will move; and nothing will be impossible for you. . . ." Matt. 17:20

This is a scripture that I used to totally discount. What does it mean to have the faith to tell this mountain, "Move from here to there?" Are we supposed to believe that we can move mountains? That is ridiculous.

Things have changed for me regarding the meaning of faith. Faith no longer means believing in stuff that is unbelievable. Faith, in God, means the same thing as faith in my wife. It means trust. In means intimacy. It means source of courage.

Your post about fund raising reads like metaphor to me. Because you are facing mountains, it reminded me of the scripture from above. It sounds like you are growing in faithfulness--without the benefit or hinderance of traditional religion--such that you can have the faith to move mountians.

Katherine used to hate loud noises. We went to the Jersey Shore one winter and the surf was tremendous. James didn't want to go much closer, also because of the noise, but Katherine, not yet two years old, walked up to the waves, pointed at them, and yelled for them to be quiet.

Amen.

Cool Hand Luke said...

JimII, that is a great story about Katherine. I love it. I have been doing a great deal of thinking on belief and faith related to God. I've tried to put my thoughts into words a couple of times. Look for a post on that soon at A Night in the Box. In a nutshell, I'm slowly plowing through some C. S. Lewis and Kierkegaard. I find Kierkegaard so much more compelling because of his openly stating that "faith" at some level is absurd. Anyway, more to come on that...

Josh Gentry said...

Is that the image that has always been in your banner for Cancer Dad? It's brilliant.

Cool Hand Luke said...

Yep. I love that picture. We took that shot ourselves in Hawaii on our Honeymoon, so it has good memories and meaning too.

Carlos said...

The money issue is fraught with difficult questions. There are some foundations, like the Lance Armstrong foundation, that have a very clear focus on particular groups of cancer patients. In that case they pour a ton of money into research on Adolescent and Young Adult (AYA, 18-35) cancers. Over the course of the last 30 years there has been tremendous research and improvement in the outcomes for pediatric cancers, even though compared to research monies for adult cancers the numbers are quite low. The improvement is staggering in pediatric cancers in general, though obviously much more significant for some cancers than others. Pediatric cancers account for about 1% of all cases in the US, whereas AYA cancers account for about 5%. Sadly in the last 30 years there has been almost no progress in AYA cancer outcomes, and very few sources of funding until the LAF was formed about 10 years ago.
How do you allocate funds? Boy is that a tough question. There is no arguing the fact that pediatric cancers, when cured, have the greatest potential of life years saved. AYA cancers would have the next greatest potential, but there are 5 times as many patients! Older people have the fewest number of life years saved, though they make up a huge number of the patients, and they tend to be in the best position to give a lot of money for research.

Deborah said...

Dear Bloggers:

You have probably received this message a month ago, but we still need your help. Can you help us with our cancer blog survey? We are posting the original message again. Can you encourage visitors to complete the survey and make the survey link visible on your homepage? You are also welcome to participate in our study. For those of you who have already participated, we deeply appreciate your help. Thanks in advance!

-------------------------
This is a message to those of you who maintain/read/participate in blogs related to cancer. Might we request your assistance in an academic study about cancer blog usage?

My name is Deborah Chung, and I am an assistant professor at the University of Kentucky School of Journalism and Telecommunications. My research focuses on the use of new communication technologies and their potential to empower information consumers. Currently, I am interested in examining how health information seekers, particularly cancer patients and their families/friends, adopt blogs.

I am teaming up with Dr. Sujin Kim, also at UK, who is an assistant professor in the School of Library and Information Science and has a sub-specialization in medical informatics. She has been working closely with the UK Cancer Center to build a biorepository information system (UK-BIS) for lung and ovarian cancer samples. Together, we would like to learn about how new information channels, such as blogs, are being used by cancer patients and their families/friends — specifically we are interested in their motivations, uses and consequences of using blogs.

As approved by our internal review board (IRB) at UK, this study is an anonymous survey that does not carry any risks to cancer patients. At the same time, we believe the information gathered from this study will greatly contribute to our understanding of the adoption of new communication technologies by cancer patients. This information will in turn assist in supporting the needs of cancer patients for future information technology and service development.

Thus, we would appreciate your participation in our survey. You can find the survey here. You might get a notice regarding the validity of the certificate. If that happens, please continue to proceed. If for some reason you cannot access the site, please try pasting the following address into your browser: https://wintis.mowsey.org/survey/.

We appreciate your time, and thank you in advance for your help.

Sincerely,

Deborah S. Chung, Ph.D.
Assistant Professor
School of Journalism & Telecommunications
University of Kentucky
dchung@uky.edu

Sujin Kim, Ph.D.
Assistant Professor
School of Library & Information Science
University of Kentucky
sujinkim@uky.edu