Open letter to Defense Secretary Lloyd Austin from the Prostate Cancer Community
(Note: U.S. Defense Secretary Lloyd Austin for weeks kept his diagnosis of prostate cancer secret—even from his boss Commander in Chief/President Joe Biden. A political and medical storm unfolded. The Pentagon Inspector General will be investigating the policy aspects. The prostate cancer community also heaped criticism on Austin for being secretive about his cancer; not recognizing the role he could play in educating other men, especially Black men, about this disease, and for contributing to cancer fear and stigma. On Feb. 1, Austin apologized. We may never know if Austin apologized on his own or was forced to do so by his boss. In any case, his apology was appreciated. HW)
Dear Secretary Austin,
Thank you for your Feb.1st apology for some missteps you took to the “gut punch” you received from your prostate cancer diagnosis.
Your “first instinct” to keep the diagnosis private is not uncommon among patients diagnosed with any cancer. You certainly are not the first man to try to withhold his diagnosis not only from his boss and associates but also from family and friends.
Your apology together with acceptance of your diagnosis is a welcome step toward healing, which impacts not only you but also 3 million of us who are living with prostate cancer, the so-called “Reluctant Brotherhood.” We would also like to identify your fellow “Brothers In Arms,” who experience a much higher incidence of this cancer, and we would like to request your help in finding the answer to that issue.
You told a media briefing: “I've learned from this experience. Taking this kind of job means losing some of the privacy that most of us expect. The American people have a right to know if their leaders are facing health challenges that might affect their ability to perform their duties -- even temporarily.”
You clearly have learned from this experience that on occasion public interest trumps the private good, especially for public figures. Others will benefit.
You now stand shoulder to shoulder alongside other generals, officers, soldiers, sailors, and airmen diagnosed with prostate cancer, who became role models and educators for a cancer that affects so many men and their families.
The American Cancer Society estimates that nearly 300,000 men will be diagnosed this year with prostate cancer. And 35,000 men will die from prostate cancer, second only to lung cancer for male deaths. Prostate cancer is the most common cancer after skin cancer in American men and the second most deadly.
The disease’s impact is greater in Black men. In the United States, Black men have a 1.6-fold increased incidence of prostate cancer and 2.1-fold increased mortality compared to white men.
Today, there are over 500,000 Veterans living with the disease within the Veterans Health Administration system, 16,000 dealing with a metastatic form of the disease. We are also seeing over 15,000 new cases each year and most importantly have a 14% incidence of diagnoses being metastatic on first diagnosis. This is double the incidence of the general population.
Prostate cancer is quite literally an epidemic in Black men, which makes your openness more urgent and significant.
Your words opened the door for a conversation in which we can find much-needed support and guidance.
You gave us all a lesson in humility and the importance of the healing impact of the words, “I’m sorry.”
In the years ahead, we look forward to collaborating with you to inform the public about prostate cancer, and how we can begin to make a difference by easing the burden of this disease.
Monday, February 5, 2024
Howard Wolinsky, Editor & Publisher, TheActiveSurveillor.com, co-founder of Active Surveillance Patients International
Michael Crosby, CDR USN ret., Founder and CEO of Veterans Prostate Cancer Awareness, Inc.
Mark Lichty, Chairman and Co-founder of Active Surveillance Patients International
Richard Davis, Founder & V.P., AnCan Foundation
Alexandra Scholz, CEO, Prostate Cancer Research Institute
Chief Executive Officer, PCRI
Capt James "Jim" Marshall, USAF(Ret), USGOVT(Ret), Moderator, AnCan Foundation's Veteran Support Group, 100% VA Disabled Permanent & Total StageIV Terminal Prostate Cancer
Michael Wyn, Founder, ProstateNOW.org
Ming Zhou, MD, PhD, Pathologist-in-Chief and Chair of the Tufts Medical Center Department of Pathology; Professor and Chair, Department of Anatomic and Clinical Pathology, Tufts University School of Medicine
Peter C. Albertsen, MD, Professor of Surgery and Chief and Program Director, Division of Urology, University of Connecticut
Paul Schellhammer, MD, prostate cancer patient and Professor Emeritus/Urology, Eastern Virginia Medical School
Hugh Idstein, moderator, AnCan Foundation Virtual Support Group for Active Surveillance
Garry Tosca, moderator, AnCan Foundation Virtual Support Group for Active Surveillance; Specialist 4th Class, combat infantryman in the Republic of South Vietnam. 8 September 1969 to 6 April 1971.
Gary Ireland, moderator, AnCan Foundation Virtual Support Group for Active Surveillance
We first wrote an open letter to Secretary Austin on Jan. 16, 2024, calling on him to end the secrecy about his cancer and try to end the stigma of prostate cancer,:
ASPI webinar on how AI will decrease overdiagnosis and overtreatment of prostate cancer
AI, short for artificial intelligence, is in the headlines increasingly. Medical care is expected to receive the biggest benefits in the field, including prostate cancer.
Join Active Surveillance Patients International (ASPI) on Feb. 24 at noon-1:30 p.m. Eastern to hear a panel talk about AI and how it will be affecting our lives as prostate cancer patients in a program entitled “How AI will decrease overdiagnosis and overtreatment of prostate cancer.”
The panel includes:
—Niels Olson, MD, is a board-certified pathologist and the Chief Medical Officer at the Defense Innovation Unit in Mountain View, California. In this role, he oversees research programs in machine learning/AI for a broad spectrum of anatomic pathology applications, augmented reality microscopy, and artificial intelligence applications in radiology.
—Daniel Spratt, MD, Chair of radiation oncology at University Hospitals in Cleveland, who ordered Artera for Bruno. He says two-thirds of men making the transition to radiation can now avoid ADT and its serious side effects.
—Tim Showalter, MD, MPH, is Chief Medical Officer at ArteraAI. He is a radiation oncologist and cancer researcher and a clinical professor at the University of Virginia. The Centers for Medicare and Medicaid Services recently set reimbursement rates for Artera AI.
—Bruno Barrey, a robotics engineer from suburban Detroit, who was able to avoid Androgen Deprivation Therapy because of an analysis by Artera AI as he transitioned from Active Surveillance to radiation treatment.
—A representative (TBA) for Immunis, a Detroit area AI developer, that is working on a test to guide men on deciding whether to go on Active Surveillance.
Only a month away. No excuses. What’re you waiting for? Sign up for ZERO support group on AS in March
By Howard Wolinsky
For the past three years, I have run a special Active Surveillance support group for ZERO. Last year, our virtual support meeting drew 60 patients to talk about AS. By far, it was the biggest session of any at the annual ZERO Summit.
Be there or be square: 11 a.m. Eastern on March 12, 2024.
Register in advance for this meeting:
https://us02web.zoom.us/meeting/register/tZUsfuqgrjIoG9AWf7voMhzT_UjdqbQQbQPA
Thanks, Dr. Vorstman. My guess, pert near all of us, if not all, had no clue to the reason.
Prostate cancer awareness and support groups are great till we try to answer the question - where is the irrefutable and reproducible data showing that all of these schemes, including testing and treatment, actually help and save significant numbers of lives? Where is the hard undeniable evidence? Or, are we simply harming countless numbers of men wishing we were doing good? By the way, Defense Secretary Austin suffered one of the many complications associated with the unproven robotic prostatectomy.