Wildly Under Funded With Gravely Ill Advocates

This morning I watched the March 13, 2008 video of Dr. Randy Pausch sitting before Congress. You may know him as the professor of computer science at Carnegie Mellon. His last lecture video that was made famous by “youtube” has had over 6 million hits since he gave it in September of 2007.

I have been following Dr. Pausch’s progress in his inspirational fight against this dreaded disease, pancreatic cancer. This cancer doesn’t care that he never smoked, drank or is an avid exerciser. This cancer doesn’t care that he is only 47, a brilliant professor and has three young children ages 6, 4, and almost 2 who will be fatherless before the end of this year.

Dr. Pausch spoke before Congress, bravely describing the need for more funding for pancreatic research. I watched as the panel attentively listened to his testimony. I was reminded of the statement, “If the Congressional Panel put down their blackberry’s and actually listened, it was a good sign.” Was Congress attentive to Dr. Pausch’s testimony because of his new found “youtube” celebrity status? We’ll never know, but I hope that they continue to give everyone testifying before them, the same proper courtesy.

Pancreatic cancer is the most deadliest form of cancer with the least NCI funding. Less then 1% of the National Cancer Institutes 4.8 billion dollars on cancer research is given to fight this disease. With 75% of pancreatic cancer patients dying from this disease in less then one year, why is it so under funded?

My thoughts on this matter bring me to some humbling opinions. Brilliant researchers are diligently working to find cures. I will use St. Jude’s Hospital as an example. The cure rate for the childhood cancer, acute lymphoblastic leukemia was 4% survival rate in 1962. Today they are looking at an 80% survival rate, on this once “universally fatal” disease. That would never have been possible without those researchers being heavily funded.

When dealing with pancreatic cancer, there is little to no incentives to research this cancer. Junior researchers with their smart, brilliant minds want to make a big difference in this world. Working on projects that are barely funded, just isn’t something most researchers want to commit to. Smart researchers want to work on heavily, funded projects. They want to make certain that their in-depth studies will continue.

Another problem is lack of advocates. As Dr. Pausch reminded us, pancreatic cancer patients don’t last long. There isn’t much time for them to get their own affairs in order, let alone advocate for funds. I’m positive his wife Jai will do all she can to continue his fight for funding, but even then her time will be limited with the demands of raising 3 young children .

Tomorrow, March 22nd will be the anniversary of my own fathers death due to this hideous disease. My time of lamenting hasn’t ended. In the four years of my fathers passing “nothing” has changed. After hearing Dr. Pausch’s speech before Congress today, I was saddened to learn “nothing” has changed in the past 30 years. Pancreatic cancer is still the least funded and most deadliest form of cancer.

Several questions come to my mind when I think of the lack of funding given to these very neglected patients. Are they medically not profitable enough? When my father was diagnosed, he was told to go home and get his things in order. My parents had discussed the option of chemotherapy with their Doctor and although it might have given him a little more time, he chose not to have this treatment. You can imagine the lack of compassion felt, when he received several phone calls from the oncologist office wanting to set up his chemotherapy sessions. The nurse became absolutely irate when my mother declined to make the appointments. I can’t help but wonder if my father had “No” health insurance, if the oncologist would have been so eager for him to be scheduled.

In closing I pray that Congress will not repeat the same injustices that had been placed on those “now deceased patients.” No matter what our government might think, nobody is immune from this disease and it could easily happen to them or one of their own. As it stands now it will continue to be a round robin, no win situation. With lack of funding, researchers are just not interested in tackling this mountain and without researchers the next 30 years look just as grim for the pancreatic cancer patient as in the past.

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