Thanks for bringing me back to the work I did on HIV/AIDS as our generation goes from one health crisis to another. I see parallels between the prostate cancer crisis and the HIV/AIDS crisis.
Denial is a key word.
So is silence, As they said back in the day: Death=Silence.
Activism in the time of AIDS worked, saving lives and changing how research was done to speed up the drug approval process and engaging patients and those at most risk in the research.
Women with breast cancer learned from the AIDS playbook learned their lessons well with protests and demanding--sometimes impolitely, even baring their post-surgically flast chests in protest of the status quo--more funding.
I don't why men with prostate cancer are so genteel. We demand more funding. We need to hold die-ins to make the point: Death=Silence. We need to let Congressional reps know, especially those who have PCa, we need their help. Death=Silence.
I really started covering AIDS in 1981 when it was discovered and called GRIDS (Gay-Related Immune Deficiency).
City Editor Mary Dedinsky at the Sun-Times editor asked me in the early 1980s what I should be covering in the coming year.
Without hesitation, I said three things: AIDS, AIDS & AIDS.
Without hesitation, she said: Go for it.
Simple as that. It changed my life, and I hope the afflicted men and their families as we poked at the medical and political establishments.
There was a crisis that killing our fellow Americans, who happened to be gay.
We were awash in denial.
Our President (Reagan) deliberately ignored the epidemic as were Congress and religious leaders. No compassion.
AIDS was killing a generation, my generation.
I ‘m choking up as I write this. Most of the men I wrote about in those years died. It was shocking and depressing that guys in their 30s, guys like me, were dying.
The Sun-Times editor set me and my fellow reporter Tom Brune loose to cover the crisis. We did exposes on injustices, such as an inability of Medicaid patients to access the expensive drug, AZT, the only one available at the time. We wrote about job discrimination, discrimination in the schools, etc. We covered die-ins. Did profiles on patients who were dying.
We were doing what journalists should do. Comfort the afflicted; afflict the comfortab
le.
Gay Chicago Magazine named us “Heroes to the Gay Community.” It was quite moving.
Tom and I did a book, “The Serpent on the Staff: The Unhealthy Politics of the AMA.” (Tarcher/Putnam, 1994) that covered the AIDS crisis,
For the book, I interviewed playwright Larry Kramer, of Act-Up, and other activists. They protested but they also showed a way to involve patients and those at risk in research and accelerate the drug approval process, helping everyone. (Not that there aren't still plenty of problems.)
The gay community found a voice and made a difference as AIDS transformed into more of chronic disease than a deadly epidemic. Patients and doctors made this happen.
As a reporter, I also chronicled the rise of women who spoke out for more funding of research on breast cancer. They gained inspiration and guidance from the AIDS activists.
They persuaded Congress and the Department of Defense, which has top-notch researchers, to spend millions on breast cancer research in the 1990s. DoD signed on after the Vietnam debacle that killed my generation and was ready to build bridges.
The women activists learned well from ACT-UP et al.
But men with prostate cancer have not shown the same zeal for funding prostate cancer overall let alone low-risk prostate cancer. This PCa epidemic is on the rise and will double in the number of diagnosed in the next 30-35 years.
I don’t know why. What happened to my generation? Too complacent? In denial? Ran out of gas?
The story is that the U.S. DoD may shut down its prostate cancer and other research programs.
We’ve have to rely on the likes of the Prostate Cancer Foundation, which does little to advocate for men with low-risk disease. I call them the Advanced Prostate Cancer Foundation. I'd guess they're fired up to save the DoD funding since it is reserved only for patients with "lethal prostate cancer."
ZERO Prostate Cancer is doing what it can now, lined up against the many advocates for funding research for other diseases. I will have more say about them soon following my interview today with their CEO, Courtney Bugler. She has skin in the game. Her dad is on AS. She herself has experienced the effects of over-treatment of breast cancer. So she understands what we're upagainst, though I am not sure her organization does. <ore later.
Congressional reps stood up for their wives, mothers, daughters, sisters and funded a DoD program to do more research to save the lives of women with breast cancer starting in 1992. The prostate cancer research program started in 1997. We came late to the party--as usual.
Strangely, several members of Congress have prostate cancer but they can manage to a bill on PSA screening. ZERO has been trying for several years to get passed a limited bill to require insurers to cover PSA testing for Black men, who are hard hit by PCa.
(Personally, I think such coverage should be available for all men, especially minorities, including Latinos and Native Americans and Pacific Islanders. ZERO says they had to start somewhere.)
I had mixed feelings about this “all-hands-on deck” call to action.
A couple of years ago a prominent researcher and an AS champion complained to me that the DoD program no longer was granting funds for research on AS. He saw this as an inequity but not enough of one to speak publicly about this. He has left to me.
I started an inquiry at DoD and frankly ran into DoD BS and little help when I requested to interview the prostate program’s head.
I confirmed that we patients on AS for lower-risk PCa had fallen off the radar screen.
ZERO is asking all patients with PCa, to write to Congress. That means low-risk men standing up for funding for high-risk men.
Frankly, I’m not sure. I am bothered in a petty way that so little research funding has been made available for us low-risk patients. I’ll write more about this soon.
Still, I think we should support fellowpatients with higher risk disease, with the hope that someday they’ll help us on our very different journeys.
Please contact your Congressional reps and help ZERO try to successfully bend some ears at a time when, frankly, all research funding is up in the air.
Some of you complained that you had trouble navigating the system. A ZERO lobbyist told me the problems have been fixed. Why not cut and paste it and find out?
And I'd ask all these groups like ZERO and the Prostate Cancer Foundation, when they ask you to donate: “What have you done for me lately?”
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.
Thanks for reminding me of my work on HIV/AIDS in the 1980s and 1990s.
I really started covering AIDS in 1981 when it was discovered and called GRIDS (Gay-Related Immune Deficiency).
The City Editor Mary Dedinsky at the Sun-Times editor asked me in the early 1980s what I should be covering in the coming year.
Without hesitation, I said three things: AIDS, AIDS & AIDS.
Without hesitation, she said: Go for it.
Simple as that. It changed my life.
There was a crisis that was killing our fellow Americans who happened to be gay.
We were awash in denial.
Our President (Reagan) deliberately ignoring the epidemic as were Congress and religious leaders. No compassion.
AIDS was killing a generation, my generation.
I ‘m choking up as I write this. Most of the men I wrote about in those years died. It was shocking and depressing that guys in their 30s, guys like me, were dying.
The Sun-Times editor set me and my fellow reporter Tom Brune loose to cover the crisis. We did exposes on injustices, such as an inability to access the expensive drug, AZT, the only one available at the time, for Medicaid patients. We wrote about job discrimination, etc. We covered die-ins. Did profiles on patients dying.
We were doing what journalists should do. Comfort the afflicted; afflicting the comfortab
le.
Gay Chicago Magazine named us “Heroes to the Gay Community.” It was quite moving.
Tom and I did a book, “The Serpent on the Staff: The Unhealthy Politics of the AMA.” (Tarcher/Putnam, 1994.)
For the book, I interviewed playwright Larry Kramer, of Act-Up, and other activists. They protested but they also showed a way to involve patients in research and accelerate the drug approval process that helped everyone.
The gay community found a voice and made a difference as AIDS became more of chronic disease than a deadly epidemic.
As a reporter, I also chronicles the rise of activist women who spoke out for more funding of research on breast cancer.
They gained inspiration and guidance from the AIDS activists.
They persuaded Congress and the Department of Defense, which has top-notch researchers, to spend millions on breast cancer research in the 1990s. DoD signed on after the Vietnam debacle that killed my generation and was ready to build bridges.
The women activists learned well from ACT-Up et al.
But men with prostate cancer have not shown the same zeal for funding prostate cancer overall let alone low-risk prostate cancer. This PCa epidemic is on the rise and will double in the number of victims in the next 30-35 years.
I don’t know why. What happened to my generation? Too complacent? In denial? Ran out of gas?
We’ve have to rely on the likes of the Prostate Cancer Foundation, which does little to advocate for men with low-risk disease. I call them the Advanced Prostate Cancer Foundation.
ZERO Prostate Cancer is doing what it can now, lined up against the many advocates for funding research for other diseases. I will have more say about them soon following my interview with their CEO, who has skin in the game. Her dad is on AS. She herself has experienced the effects of over-treatment of breast cancer.
Congressional reps stood up for their wives, mothers, daughters, sisters and funded a DoD program to do more research to save the lives of women with breast cancer. I just told part of that story here:
Strangely, several members of Congress have prostate cancer. ZERO has been trying for several years to get passed a limited bill to require insurers to cover PSA testing for Black men, who are hard hit by PCa.
I had mixed feelings about this “all-hands-on deck” call to action.
A couple of years ago a prominent researcher and an AS champion complained to me that the DoD program no longer was granting funds for research on AS. He saw this as an inequity but not enough of one to speak publicly about this. He has left to me.
I started an inquiry at DoD and frankly ran into BS and little help when I requested to interview the prostate program’s head.
I confirmed that we patients on AS for lower-risk PCa had fallen off the radar screen.
ZERO is asking all patients with PCa, to write to Congress. That means low-risk men standing up for funding for high-risk men.
Frankly, I’m not sure. I am bothered in a petty way that so little research is done for us low-risk patients. I’ll write more about this soon.
We should back up our reluctant brotherhood, with the hope that someday they’ll help us.
Please contact your Congressional reps and help ZERO try to successfully bend some ears at a time when all research funding is up in the air.
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.
Ken,
Thanks for bringing me back to the work I did on HIV/AIDS as our generation goes from one health crisis to another. I see parallels between the prostate cancer crisis and the HIV/AIDS crisis.
Denial is a key word.
So is silence, As they said back in the day: Death=Silence.
Activism in the time of AIDS worked, saving lives and changing how research was done to speed up the drug approval process and engaging patients and those at most risk in the research.
Women with breast cancer learned from the AIDS playbook learned their lessons well with protests and demanding--sometimes impolitely, even baring their post-surgically flast chests in protest of the status quo--more funding.
I don't why men with prostate cancer are so genteel. We demand more funding. We need to hold die-ins to make the point: Death=Silence. We need to let Congressional reps know, especially those who have PCa, we need their help. Death=Silence.
I really started covering AIDS in 1981 when it was discovered and called GRIDS (Gay-Related Immune Deficiency).
City Editor Mary Dedinsky at the Sun-Times editor asked me in the early 1980s what I should be covering in the coming year.
Without hesitation, I said three things: AIDS, AIDS & AIDS.
Without hesitation, she said: Go for it.
Simple as that. It changed my life, and I hope the afflicted men and their families as we poked at the medical and political establishments.
There was a crisis that killing our fellow Americans, who happened to be gay.
We were awash in denial.
Our President (Reagan) deliberately ignored the epidemic as were Congress and religious leaders. No compassion.
AIDS was killing a generation, my generation.
I ‘m choking up as I write this. Most of the men I wrote about in those years died. It was shocking and depressing that guys in their 30s, guys like me, were dying.
The Sun-Times editor set me and my fellow reporter Tom Brune loose to cover the crisis. We did exposes on injustices, such as an inability of Medicaid patients to access the expensive drug, AZT, the only one available at the time. We wrote about job discrimination, discrimination in the schools, etc. We covered die-ins. Did profiles on patients who were dying.
We were doing what journalists should do. Comfort the afflicted; afflict the comfortab
le.
Gay Chicago Magazine named us “Heroes to the Gay Community.” It was quite moving.
Tom and I did a book, “The Serpent on the Staff: The Unhealthy Politics of the AMA.” (Tarcher/Putnam, 1994) that covered the AIDS crisis,
For the book, I interviewed playwright Larry Kramer, of Act-Up, and other activists. They protested but they also showed a way to involve patients and those at risk in research and accelerate the drug approval process, helping everyone. (Not that there aren't still plenty of problems.)
The gay community found a voice and made a difference as AIDS transformed into more of chronic disease than a deadly epidemic. Patients and doctors made this happen.
As a reporter, I also chronicled the rise of women who spoke out for more funding of research on breast cancer. They gained inspiration and guidance from the AIDS activists.
They persuaded Congress and the Department of Defense, which has top-notch researchers, to spend millions on breast cancer research in the 1990s. DoD signed on after the Vietnam debacle that killed my generation and was ready to build bridges.
The women activists learned well from ACT-UP et al.
But men with prostate cancer have not shown the same zeal for funding prostate cancer overall let alone low-risk prostate cancer. This PCa epidemic is on the rise and will double in the number of diagnosed in the next 30-35 years.
I don’t know why. What happened to my generation? Too complacent? In denial? Ran out of gas?
Now we are facing this again as an "all-hands-deck" call was made by ZERO Prostate Cancer yesterday: https://open.substack.com/pub/howardwolinsky/p/scratch-my-back-and-ill-scratch-yours?r=4ah4&utm_campaign=post&utm_medium=web&showWelcomeOnShare=false
The story is that the U.S. DoD may shut down its prostate cancer and other research programs.
We’ve have to rely on the likes of the Prostate Cancer Foundation, which does little to advocate for men with low-risk disease. I call them the Advanced Prostate Cancer Foundation. I'd guess they're fired up to save the DoD funding since it is reserved only for patients with "lethal prostate cancer."
ZERO Prostate Cancer is doing what it can now, lined up against the many advocates for funding research for other diseases. I will have more say about them soon following my interview today with their CEO, Courtney Bugler. She has skin in the game. Her dad is on AS. She herself has experienced the effects of over-treatment of breast cancer. So she understands what we're upagainst, though I am not sure her organization does. <ore later.
Congressional reps stood up for their wives, mothers, daughters, sisters and funded a DoD program to do more research to save the lives of women with breast cancer starting in 1992. The prostate cancer research program started in 1997. We came late to the party--as usual.
I just told part of that story here:
https://howardwolinsky.substack.com/p/incidence-of-pca-nipping-at-heels?utm_source=publication-search
Strangely, several members of Congress have prostate cancer but they can manage to a bill on PSA screening. ZERO has been trying for several years to get passed a limited bill to require insurers to cover PSA testing for Black men, who are hard hit by PCa.
(Personally, I think such coverage should be available for all men, especially minorities, including Latinos and Native Americans and Pacific Islanders. ZERO says they had to start somewhere.)
Then, yesterday ZERO e-blasted us with a warning that a funding crisis affecting the DoD program. See yesterday’s story: https://open.substack.com/pub/howardwolinsky/p/scratch-my-back-and-ill-scratch-yours?r=4ah4&utm_campaign=post&utm_medium=web&showWelcomeOnShare=false
I had mixed feelings about this “all-hands-on deck” call to action.
A couple of years ago a prominent researcher and an AS champion complained to me that the DoD program no longer was granting funds for research on AS. He saw this as an inequity but not enough of one to speak publicly about this. He has left to me.
I started an inquiry at DoD and frankly ran into DoD BS and little help when I requested to interview the prostate program’s head.
I confirmed that we patients on AS for lower-risk PCa had fallen off the radar screen.
ZERO is asking all patients with PCa, to write to Congress. That means low-risk men standing up for funding for high-risk men.
Frankly, I’m not sure. I am bothered in a petty way that so little research funding has been made available for us low-risk patients. I’ll write more about this soon.
Still, I think we should support fellowpatients with higher risk disease, with the hope that someday they’ll help us on our very different journeys.
Please contact your Congressional reps and help ZERO try to successfully bend some ears at a time when, frankly, all research funding is up in the air.
https://zerocancer.quorum.us/campaign/SAVECDMRP/
Some of you complained that you had trouble navigating the system. A ZERO lobbyist told me the problems have been fixed. Why not cut and paste it and find out?
And I'd ask all these groups like ZERO and the Prostate Cancer Foundation, when they ask you to donate: “What have you done for me lately?”
Rise up angry.
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
Ken,
Thanks for reminding me of my work on HIV/AIDS in the 1980s and 1990s.
I really started covering AIDS in 1981 when it was discovered and called GRIDS (Gay-Related Immune Deficiency).
The City Editor Mary Dedinsky at the Sun-Times editor asked me in the early 1980s what I should be covering in the coming year.
Without hesitation, I said three things: AIDS, AIDS & AIDS.
Without hesitation, she said: Go for it.
Simple as that. It changed my life.
There was a crisis that was killing our fellow Americans who happened to be gay.
We were awash in denial.
Our President (Reagan) deliberately ignoring the epidemic as were Congress and religious leaders. No compassion.
AIDS was killing a generation, my generation.
I ‘m choking up as I write this. Most of the men I wrote about in those years died. It was shocking and depressing that guys in their 30s, guys like me, were dying.
The Sun-Times editor set me and my fellow reporter Tom Brune loose to cover the crisis. We did exposes on injustices, such as an inability to access the expensive drug, AZT, the only one available at the time, for Medicaid patients. We wrote about job discrimination, etc. We covered die-ins. Did profiles on patients dying.
We were doing what journalists should do. Comfort the afflicted; afflicting the comfortab
le.
Gay Chicago Magazine named us “Heroes to the Gay Community.” It was quite moving.
Tom and I did a book, “The Serpent on the Staff: The Unhealthy Politics of the AMA.” (Tarcher/Putnam, 1994.)
For the book, I interviewed playwright Larry Kramer, of Act-Up, and other activists. They protested but they also showed a way to involve patients in research and accelerate the drug approval process that helped everyone.
The gay community found a voice and made a difference as AIDS became more of chronic disease than a deadly epidemic.
As a reporter, I also chronicles the rise of activist women who spoke out for more funding of research on breast cancer.
They gained inspiration and guidance from the AIDS activists.
They persuaded Congress and the Department of Defense, which has top-notch researchers, to spend millions on breast cancer research in the 1990s. DoD signed on after the Vietnam debacle that killed my generation and was ready to build bridges.
The women activists learned well from ACT-Up et al.
But men with prostate cancer have not shown the same zeal for funding prostate cancer overall let alone low-risk prostate cancer. This PCa epidemic is on the rise and will double in the number of victims in the next 30-35 years.
I don’t know why. What happened to my generation? Too complacent? In denial? Ran out of gas?
We’ve have to rely on the likes of the Prostate Cancer Foundation, which does little to advocate for men with low-risk disease. I call them the Advanced Prostate Cancer Foundation.
ZERO Prostate Cancer is doing what it can now, lined up against the many advocates for funding research for other diseases. I will have more say about them soon following my interview with their CEO, who has skin in the game. Her dad is on AS. She herself has experienced the effects of over-treatment of breast cancer.
Congressional reps stood up for their wives, mothers, daughters, sisters and funded a DoD program to do more research to save the lives of women with breast cancer. I just told part of that story here:
https://howardwolinsky.substack.com/p/incidence-of-pca-nipping-at-heels?utm_source=publication-search
Strangely, several members of Congress have prostate cancer. ZERO has been trying for several years to get passed a limited bill to require insurers to cover PSA testing for Black men, who are hard hit by PCa.
(Personally, I think such coverage should be available for all men, especially minorities, including Latinos and Native Americans and Pacific https://howardwolinsky.substack.com/p/incidence-of-pca-nipping-at-heels?utm_source=publication-search says they had to start somewhere.)
Then, yesterday ZERO e-blasted us with a warning that a funding crisis affecting the DoD program. See yesterday’s story: https://howardwolinsky.substack.com/p/incidence-of-pca-nipping-at-heels?utm_source=publication-search
I had mixed feelings about this “all-hands-on deck” call to action.
A couple of years ago a prominent researcher and an AS champion complained to me that the DoD program no longer was granting funds for research on AS. He saw this as an inequity but not enough of one to speak publicly about this. He has left to me.
I started an inquiry at DoD and frankly ran into BS and little help when I requested to interview the prostate program’s head.
I confirmed that we patients on AS for lower-risk PCa had fallen off the radar screen.
ZERO is asking all patients with PCa, to write to Congress. That means low-risk men standing up for funding for high-risk men.
Frankly, I’m not sure. I am bothered in a petty way that so little research is done for us low-risk patients. I’ll write more about this soon.
We should back up our reluctant brotherhood, with the hope that someday they’ll help us.
Please contact your Congressional reps and help ZERO try to successfully bend some ears at a time when all research funding is up in the air.
https://howardwolinsky.substack.com/p/incidence-of-pca-nipping-at-heels?utm_source=publication-search
Some of you complained that you had trouble navigating the system. A ZERO lobbyist told me those problems have been fixed.
And ask all these groups like ZERO and the Prostate Cancer Foundation, when they ask you to donate: “What have you done for me lately?”
Rise up angry.
Thanks, Steve. The brotherhood is meeting March 20 in suburban Chicagoi. Yikes, that sounds a little weird. Howard
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.
You have no idea how many PCa patients supported the orangutan and now the clown is gutting the NIH. Good luck with the appeals...oh, and get in line.