Monday, September 29, 2008

20 miles and AYA

20 miles. That's a long way to run. I was about 23 minutes my goal, but I finished. One advantage in running your very first 20 mile race...your time is a guaranteed a personal record. And I did beat my personal records at the 10, 13 and 16 mile markers. 413 miles run. Only 65 miles and 20 days to the marathon.

After the race I took an ice bath to heal my legs. I filled up the tub with freezing water, and Kathy got the ice. As I dropped into the water, I wondered why I was doing this. I wondered how long it would hurt. But more than anything I wondered why my wife was enjoying this so much. She had a look of pure pleasure as she poured the bucket of ice onto my lap, while I sat naked in the freezing water. As my lips turn blue, I looked at her smiling face. She was actually laughing. I do not see the humor in any of this.

While I was running, I thought a lot about why I was doing this, and all the people I know effected by cancer.

At age 20, my aunt died of Colon cancer, only 6 months after giving birth to my cousin Debbie. That was 45 years ago in the poor cotton mill town where most my family and I were born. Today we have more options and access to the best hospitals. But not much has changed for 20 year olds with cancer. It was 30 years ago that doctors discovered that cancer acts very different in a age group now called AYA. Adolescents and Young Adults, ages 15-39. The cancer moves faster and traditional treatments are less effective. But amazingly there has been almost no research into why this is true. Why is that?

The U.S. Department of Health and Human Services published a 5 year study, Closing The Gap: Research and Care Imperatives for Adolescents and Young Adults with Cancer. The report states that, although the AYA group has biological issues that are different from children and older adults, there has been little advocacy for this group. Additionally, the five year survival rates for AYA patients has lagged far behind those of childhood and older adult patients. The report states “While dramatic survival improvements have been achieved in patients diagnosed at age 15 or younger and steady improvement has been made against a number of cancers common among those over age 40, little or no progress has been seen in the AYA population. In fact, survival has not improved in more than two decades.”

My son beat cancer. It was ugly what he went through, but he fought hard and won. He is now 90+ days in remission. During his fight I searched everywhere for information on his cancer. In the U.S. I found 49 people in the AYA age group who were diagnosed with stage IV Burkitt's Lymphoma Leukemia during 2007. 44 have passed away. Why is that? I found almost no one who had been informed by their doctors that treatment data is almost non-existent for their age group, that the protocols were not written for their age group, that chemo was having long term side effects on AYA patients, that AYA survival rates were improved only by a customized treatment approach. Why was none of this information shared? Why?

Starting with the MD Anderson Cancer Institute AYA program, the few top rated cancer hospitals have now created AYA departments to better treat these patients. But the majority of hospitals still deny the data, insisting on using the "one-size-fits-all" assembly line approach of protocols. Why?

Other than the 70+ age group, cancer survival rates have improved an average of 30% over the past 20 years...except in the AYA group. In fact, the 15-22 year age group shows declining survival rates. Why?

At least we have some fundamental answers on childhood cancers. But we still can not even get dedicated focus and funding there. The National Institute of Cancer, as well as most other funding and research groups, give little more than lip service to childhood cancer...and those answers are within our grasp. Less than 3% of cancer resources go to childhood cancers. Our government spends $10 billion annually on AIDS research. Breast cancer gets $550 million, prostate gets $306 million, and lung cancer gets $209 million. $1.7 billion was spent to develop Viagra. But all 12 childhood cancers combined receive only $30 million -- finally approved, but still not yet funded. The AYA group has yet to come that far. Where are the priorities? How can we continue to ignore our children and young adults?

In November of 2006, representatives from the National Institutes of Health, National Cancer Institute, and the LIVESTRONG Young Adult Alliance met to develop strategies to address these realities. The good news is that discussions are finally happening. The bad news is, after everything is said and done...much more is being said than getting done.


Why?

1 comment:

Anonymous said...

My husbad was fighting Burkitt's Stage IV. He was on the same path. Diagnosed in November 2007 but died in April 2008. He was 39 on the latter end of the AYA population. I am always praying for you and your family. I check your site often and always walk away feeling better.