In the past, I have been a huge critic of the American Cancer Society and in September, I wrote a very inflamed blog about all that I felt was wrong with the American Cancer Society’s (ACS) involvement with childhood cancer. I believe in telling it like it is and speaking up for the children who have little or no voice when it comes to cancer. I have never spared any words with NIH, NCI, FDA, ACS, government and others. Fortunately, there are plenty of others in this community that also believe in speaking up for the kids. When it comes to childhood cancer, you don’t have to ask how our members feel, they’ll tell you in a heartbeat.
I had a huge response on that September blog. “Give’m hell, Joe!,” was the theme of many emails and phone calls I received shortly after my furious blog was published. I was very angry when I wrote it. I felt empowered by the response from my fellow childhood cancer advocates’ comments. Shortly afterwards, I attended a conference in Washington, DC on childhood cancer. Right there, in the middle of a huge room in the Capitol Building, filled with other people who were childhood cancer fighters, I saw a young man named David. On closer inspection, I noticed he was wearing an American Cancer Society (ACSCAN) name tag and I immediately wondered why they would let him in the same room with all my fellow childhood cancer fighters. David was like a young Roman gladiator surrounded by lions. I gave David my card and a “too hot to handle” piece of my very inflamed childhood cancer fighting mind. I don’t know how David felt and I didn’t much care, but it sure felt good to get it off my chest.
A few days later, I left D.C. and returned to my quiet little home. It’s great place and when it is quiet and comfortable enough, I begin to do deep thinking. Sometimes, I fall asleep doing so much heavy thinking. I guess for me, at my advanced age, it works that way because when I get busy, I don’t take the time to think too deeply. It’s distracting and I lose sight of my immediate objectives. You could say that I function on instinct, not deep thinking, most of the time.
I thought about my encounter with David and wondered how much I may have advanced the concerns of childhood cancer with the American Cancer Society by acting on my instincts. Back in my old business setting, a huge three story indoor cubicle farm with lots of meeting rooms, that type of behavior would have gotten me exactly nowhere. Rule number one: Recognize the true root of your anger. For me, I was really angry at cancer and what it has done to so many families including my own. I doubt that David or the ACS would want to hurt my family or any others. Rule number two: Determine the best way to funnel your anger to get the needed result. I was mad as hell at cancer and I wanted it wiped away from earth. I can’t do it by myself sitting at a keyboard blogging about it. Rule number three: Take action.
David, gave my information to others within the ACS. This time, I tried a different approach, one that had worked for me in my business career before I retired and got involved with childhood cancer. I sat down and had meaningful dialogs with those who could affect change. Sarah with ACS contacted me and we began a conversation. Later, I was contacted by Rebecca Kirch, Director of Quality of Life & Survivorship for the ACS. She was very receptive and sincere. We met on several occasions and we agreed that the fight against childhood cancer would be much more effective if we worked together. We shared a common goal. There have been plenty of missteps from all sides along the way. I had the opportunity to discuss everything that was important to our community. We shared our visions of what was needed to move forward in partnership. We agreed it would not be easy. Like the business I came from, the American Cancer Society is a large ship and just can’t turn on a dime. It will take time. On the other hand, look at our childhood cancer community. It’s no easy task getting all our sail boats lined up and headed in the right direction. If we are going to help children by helping each other, it will take time. Yes, I realize how urgent it is. Children are dying from cancer. We can’t afford delay, so let’s get started on forging better relationships as quickly as possible.
One, just one of the many, many problem areas we discussed was the data we had used to compare progress. I think members of the community would all agree, we should not be comparing our progress on kids’ cancer in increments of multiple decades. We need more current data, or a “report card” that will measure our progress or lack of progress by site (type). Few other organizations, except possibly St. Jude’s, can excel in gathering data like the American Cancer Society. After months of work, the ACS produced a great report that would give us much better information. This time, it was all together in one, easy to understand, report. We do not have to search through pages and pages of data to find the information we are seeking. By the way, since the report deals with childhood and adolescent cancer, I am really glad to see they included a big gold ribbon on their Facebook post as requested.
Will this report alone change the landscape of the community’s relationship with the ACS? No, but it is a good place to start. I applaud their positive steps in creating a clear and comprehensive report specifically for childhood cancer. The report will be very helpful to all the major organizations, ACS included, that have the ability to make a huge impact. I hope everyone can appreciate the value of the ACS report and all the work that went into it.
If we lash out at the ACS or others and continue to beat them up when they do something good and constructive, we will never form the relationships we need to beat cancer. We can take a lesson from our own kids and like them, find ways we can “play” (work) together. We need to work together. The battle against childhood cancer can benefit by having an organization like the ACS functioning in full partnership with the community. We can’t get partners to the table if they are greeted with sticks and stones. It’s easier to effect change inside a partnership than from the outside.
When someone helps the cause by doing something positive, just a small “thank you” can go a long, long way. We need to beat cancer, not each other.
Author: Joe Baber
Well said joe! The war on cancer is being fought on many fronts. We need to reach out to one another and make sure childhood cancer becomes extinct! Let’s play nice and share our knowledge and resources and make it happen!
Reblogged this on HOPE ALWAYS and commented:
Proof that one impassioned person can make a difference. Thank you ACS! Thank you Joe Baber!
The ACS report on the Facts and Figures of Childhood Cancer is vital to our moving forward as a community with consistent stats and messaging. The ACS is the only organization that could have accomplished this. Holding hands instead of throwing darts will go a long way to more partnerships to help our nation’s children with cancer.
thanks Joe for sending this report from AcS—
And a BIG huge THANKS to AcS for hearing us + taking action with your well written and comprehensive report specifically for childhood cancer—
I think we can be friends now!
Well put, Joe. The possibilities in partnership are enormous……
Well put, Joe. The possibilities are enormous….
My problem is that they minimized pediatric cancer deaths by saying it’s the second leading cause of death in children. While that’s true I think many of us in the pediatric cancer community would have preferred that they said it’s the number one disease killer of our children, when my son was diagnosed with neuroblastoma I was floored by the facts. The report is fine I suppose but The ACS still put precious little resources into pediatric cancer research. I recently had an exchange with whomever runs the ACS Facebook page and they pointed me a part of their website that contains information about how many types of cancer they devoting funds to. However I can’t find detailed reports about what studies they are funding and where the research is leading.
One of the stats I hear thrown around a lot by the pediatric cancer community is that the ACS spends just 1 cent for every dollar raised on pediatric cancer research and support services. Is my exchange with their Facebook representative they stated that they are currently funding 26 million in pediatric cancer research. That’s 16.9% of their stated 153 million dollars in cancer research funding or 2.7% of their 947 million dollar budget. I’m curious why they’ve cut funding for camps for kids with cancer as recently as last year. In the case of Camp Adventure the cut 100% of their financial and administrative support leaving the camp scrambling to find funding. It’s hard to tell exactly what they do for kids when they don’t provide detailed reports of their expenditures.
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