Scratch my back and I'll scratch yours? How to respond to ZERO's appeal to your Congressional delegation on funding cuts
By Howard Wolinsky
I received an appeal this week—maybe you did, too—from Ali Manson, VP of government affairs at ZERO prostate cancer, to support efforts to keep Prostate Cancer Research Program (PCRP), part of the Congressionally Directed Medical Research Programs (CDMRP).
The U.S. Department of Defense in an effort to build bridges with a disillusioned public following the Vietnam catastrophe. In the current research funding environment, DoD is talking about eliminating these programs.
In the beginning, the program looked at advanced prostate cancer and also low-risk prostate cancer. A top researcher who is involved this work has been leaning on me for years to speak out about how research on Active Surveillance is no longer a priority. Patients like us with low-risk prostate cancer typically are not a priority for research. We have nothing that needs to be “cured” or treated,
We’re not a priority. We’re not at risk of dying from our cancers. But we have our own mountains to climb.
I’m going to share Manson’s letter and my response. Support ZERO, if you can: Please click on this link to take action now!
And ask them what they have done for us AS patients lately.
Howard Wolinsky
Dear Howard,
Yesterday we received some very troubling news and we need your help to protect funding for prostate cancer research. The Department of Defense is considering action that could eliminate funding for the Prostate Cancer Research Program (PCRP), one of the nation's most vital and successful prostate cancer research initiatives. This program, part of the Congressionally Directed Medical Research Programs (CDMRP), has been instrumental in advancing breakthrough treatments and saving lives.
The PCRP is a cornerstone of prostate cancer research in the United States. Groundbreaking discoveries and treatments depend on this funding, and thousands of patients and families rely on the innovations this program delivers. Once lost, this critical research infrastructure would be difficult to rebuild.
We need all hands on deck for this: Congress needs to hear from advocates like you to protect this essential program. Every moment counts in preventing this potentially devastating funding loss. Please click on this link to take action now!
Sincerely,
Ali Manson, MPH
VP, Government Relations & Advocacy
Mail: 201 N. Union St. | Mailbox 110 | Alexandria, VA 22314
Office: 515 King St. | Suite 310 | Alexandria, VA 22314
Office: (202) 888-9401Email: ali@zerocancer.org | zerocancer.org
(My response:)
When I get appeals like this, I naturally want to help.
But then I remember, the Congressionally Directed Medical Research Programs (CDMRP), long ago stopped supporting research to help men with low-risk prostate cancer. They do nothing for the majority of PCa patients.
ZERO claims CDMRP is one of the most impactful funing programs. What do you base this on.
As I advise readers of my newsletter, if someone asks you for cash, ask: What have you done for me lately?
Personally, I’ll suspend cynicism and give ZERO, at least, the benefit of the doubt.
I once served as a consumer reviewer for CDMRP and recommended supporting research that would benefit men with high- or low-risk disease as well as high-risk disease. I explained my analysis. I felt no support or enthusiasm or this argument.
The program wrote off us lower-risk patients. Other groups like the Prostate Cancer Foundation have done that as well.
Where does ZERO stand on AS patients? I hope to know more soon.
I recently wrote an article on the funding gap for prostate cancer overall and lower-risk in particular and the toxic competition for research funds.
A top researcher, who long has been involved with CDMRP, told me in its early years the program included research on Active Surveillance, but no longer does. He told me he simply feels it’s wrong. He urged me to speak out. ButI think he was afraid to rock the boat.
I have done my bit to support the Illinois version of the HIM Act.
I partially support HIM Act in Congress--though I think ZERO should include coverage of PSA testing not only for Black men, but also Hispanics, Asians-Pacific Islanders and Native Americans.
The current funding challenge reminds me of the quote from the German philosopher Martin Niemöller:
"First they came for the socialists, and I did not speak out—because I was not a socialist.
"Then they came for the trade unionists, and I did not speak out—because I was not a trade unionist.
"Then they came for the Jews, and I did not speak out—because I was not a Jew.
"Then they came for me—and there was no one left to speak for me."
We are heading into this situation. Maybe we’re there.
To paraphrase,
--Budget cutters eliminated funding for research to help patients with low- to favorable intermediate-risk prostate cancer, and I didn't speak out because I wasn't on Active Surveillance."
--Then, budget cutters eliminated funding for research on patients with advanced prostate cancer, and I didn't speak out because I don't have advanced prostate cancer."
Prostate cancer patients along the full spectrum of the disease --the reluctant brotherhood"--haven't supported each other. The same is true about supporting research across all cancers.
I'll contact my Congressional delegation in Illinois as I have in the past in hopes that if I scratch the right person’s back that they’ll scratch mine. It’s the Chicago Way, as we call it here.
This almost feels like too little too late.
I am optimistic by nature. So here goes: Please click on this link to take action now!
Howard Wolinsky
Editor, The Active Surveillor, Saving Prostates Daily
Howard, Somehow or another I think back to all of the work you did when HIV/ AIDS was running rampant.
Of course, there are some differences between then and now. However, the bottom line was certain men were being told their issues/problems/ sickness weren't as important as other men.
Sadly this issue and many others are becoming more and more politicized.
I'm sorry that I brought that issue up. These words need to be spoken and heard. More importantly, what is ZERO going to do that is new, different, and much more likely to win change??
In a world where truth and justice are lacking, and 'willful ignorance' is the rule of law, we need a new and powerful way to deal with these issues.
mason
Your reference to the "reluctant brotherhood's" hesitance to support each other has been and remains, "the elephant in the room." Thank you for putting to words what we all either know or at the very least, sense.