As I shared on this blog earlier thanks to many of you I was awarded the 2014 Harry Pinchot award. This prestigious award is made annually by the Prostate Cancer Research Institute (PCRI) and is given at their annual gala dinner which was this past Saturday night. I was joined at my table by my wife Dr. Wendy Lebowitz, my son Dov Lebowitz-Nowak, his girlfriend Amber Bloom, and Malecare’s Executive Director, Darryl Mitteldorf, as well as a number of friends who live in the Los Angeles area.
I was allowed to deliver an acceptance speech which I had written in anticipation. When I accepted the award, I went off script, but still wish to share what I had written as these are my sentiments.
My Speech as Written:
I would like to point out to everyone here this evening that during the 3 hours we are here having this celebration, 105 men worldwide will have died from advanced prostate cancer. I say advanced prostate cancer because men do not die from prostate cancer; they die from advanced prostate cancer.
This is in essence why I am here this evening, or more accurately why I do what I do.
I am a survivor of four separate primary cancers, including advanced prostate cancer. Unlike the other cancer diagnoses I have received, when I found out I had a PC recurrence I was put into a tailspin. I searched for support and good, reliable education about my disease, which I knew, would be ultimately terminal. Despite my living in New York City, with all of its hospitals and educational institutions, I was shockingly unable to locate any support or educational program specific to my diagnosis, metastatic prostate cancer.
My search went on, but it constantly came to a dead end causing me increasing levels of anger. Darryl Mitteldorf, the Founding Executive Director of Malecare, responding to my anger after a Malecare support group that again did not respond to my personal needs, gave me a simple challenge: he told me to stop complaining and do something about it.
I went home, even madder and angrier. I discussed the experience with Wendy, my loving and supportive wife. She responded, “So Joel, why don’t you do something about it?”
So, with Wendy and Darryl’s support I picked up the gauntlet and decided to go out and make a difference in the lives of the men with advanced PC as well as their families.
I started out small as Darryl set up a blog dedicated to advanced PC with the simple directive that I write everyday and write about anything I wish as long as it pertained to advanced PC. Currently, I have written over fifteen hundred posts on this blog, although I do confess I no longer write a post every day; I now take off the weekends.
Over time the blog has changed, today I mostly use it to translate and to inform survivors about cutting edge, translational PC research that could make a difference in their life as well as issues of advocacy, treatment options and public policy that directly affect our advanced prostate cancer community.
Since starting the blog I have expanded my activities to writing a book, A Survivors Guide to Advanced and Recurrent PC, downloadable for free on the Malecare web site.
I have conducted multiple teleconferences also available online, conducted with the experts on issues surrounding advanced PC.
Darryl and I started the world’s first, and I believe only, crowd funding site for prostate cancer research (StartACure.com) which has already funded a project at John’s Hopkins University.
I also have started face-to-face support groups including a group for men with advanced PC; as well as an online support group for advanced PC, which now has participants from all over the world.
Recently, we set up an innovative email based educational program that presents timely, curated translational information to men based specifically on their individual disease stage.
Information in these Prostate Flashes is designed to inform men about cutting edge research that could have an immediate and direct effect on them and their families. Our goal is to have the survivors bring this information to their doctor’s attention and engage in a conversation about its relevance to their individual healthcare plan.
One of my proudest moments was when the DOD Prostate Cancer Research Program elevated me from being a scientific reviewer to the Integration Panel where I have had the great experience, although way too short time period, to work with our own Dr. Maha Hussein, who is a medical participant here at this conference.
Now, I want to challenge all of you like I was challenged nine years ago. I challenge you, the leaders of the prostate cancer community to develop better programing for our community.
Many of us, both individuals and organizations have become lazy and only do the things we have always done.
We sit on the laurels of our prior accomplishments.
We assume the success of our programs based on quantity and not quality.
What we need is programing that is innovative, not more from our traditional mold, its time to dump the regular and mundane.
We need programing that truly speaks to our individual constituents needs and we need to confirm that we are doing this job.
We need programing that responds to the most vulnerable among us, the constituent populations that has not received adequate attention.
Malecare recently began a program, Living Alone with Cancer that seeks to understand and then respond to the special needs of men who must fight cancer while living alone. This program just completed a Quality of Life Survey. It was open for just 2 months, received 1,800 responses and generated over 125,000 data points that will be publicly available in early 2015.
Our program, Twice As Many, is responding to the great disparity we see in the African American Community where twice as many African Americans die from prostate cancer than their European counterparts.
We need to increase our support for other, less known disparate populations, like Malecare’s National LGBT Cancer Project that recognizes and supports gay and bisexual men and transgender women who have prostate cancer.
The reason I quoted worldwide death statistics when I first came up here is because prostate cancer is a worldwide problem. We need to strengthen our ties with our counterparts in other countries by utilizing organizations like The Global Prostate Cancer Alliance, which currently has 34 members coming from every continent in the world.
Now we as the prostate cancer community leaders need to let our minds go free, find the issues that plague our community and figure out ways to respond to and eliminate these issues.
It is time to think out of the box. As we do in the DOD and at Malecare, we need to support high risk, but high potential gain programing to serve the individual needs of men with prostate cancer.
I have learned so much from clinicians and researchers, who’ve shared their expertise and their time participating in workshops and teleconferences, and to explain, teach and encourage me personally.
I’ve received a tremendous amount of support and encouragement from many individuals, from Darryl, and especially my family, specifically Wendy, and my boys Dov and Max.
I thank them all, but the support that has had the most meaning for me is the support from the men with advanced, metastatic Prostate Cancer and their families.
Thank You Wendy, Darryl, all you survivors and to PCRI for this honor.
I want to leave you this evening with the wisdom of the great 20th century philosopher Lily Tomlin who said:
“I always wondered why somebody doesn’t do something about that. Then I realized I was somebody.”