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