Renaming Gleason 6 Prostate Cancer: Patient Perspectives and Impacts "Presentation" - Howard Wolinsky
July 24, 2024
At the CAncer or Not Cancer: Evaluating and Reconsidering GG1 prostate cancer (CANCER-GG1?) Symposium, Howard Wolinsky, a medical journalist and prostate cancer patient, shares his experience with active surveillance (AS) and presents findings from a survey of over 450 AS patients. He discusses the financial and emotional challenges faced by low-risk patients, including difficulties obtaining life insurance and experiencing anxiety.
Biographies:
Howard Wolinsky, Freelance Medical Journalist, Answer Cancer Foundation
Biographies:
Howard Wolinsky, Freelance Medical Journalist, Answer Cancer Foundation
Read the Full Video Transcript
Howard Wolinsky: I'm Howard Wolinsky. I'm a Chicago-based medical journalist and a prostate cancer patient. First, I'll share my experience as a patient on AS. I celebrate my "pras mitzvah" this year, 13 years on AS. And then I'll present broader views based on a survey of more than 450 patients about issues faced by patients on AS, including renaming Gleason grade 1.
I experienced financial toxicity soon after I was diagnosed. Eight insurers considered me a bad risk for term life insurance because I left untreated a single core of Gleason 6. I previously only had preferred insurance rates. As a co-founder of support groups aimed at AS patients, I see and hear the emotional distress in the faces and voices of fellow low-risk patients. Some with Gleason 6 are driven to leave AS because they're going through "anxious surveillance." And Laurie Klotz, I see this in some Canadian patients. Renaming Gleason 6 as a non-cancer could help reduce the emotional distress and financial toxicity of low-risk patients like me.
I can share more than my opinion, and you can see on the chart some of our findings. Last fall, a coalition of support organizations including ASPI, ANCAN, and Prostate Cancer Support Canada, and my newsletter, TheActiveSurveillor.com, surveyed patients via SurveyMonkey. Our poster was presented yesterday at ASCO-GU. The Epstein Two, and you know who you are, and the other opponents of Group 1 being renamed argue that patients will end surveillance if Gleason 6 were redefined as a non-cancer. The survey showed only 5% of respondents said that they would quit surveillance if Gleason 6 were renamed. 82% said they would remain on it. 13% were undecided.
The Eggener Six, of which I was the sole patient, raised questions about Gleason 6 diagnoses causing financial toxicity. We only had anecdotal evidence, but in the survey, 16% of respondents said their insurance was canceled or their premiums jacked up because of a Gleason 6 diagnosis. Most had problems with term life, followed by health insurance.
And then there are the issues with emotional distress. More than 90% of the people in the survey said their urologist had not screened them, to the best of their knowledge, for emotional distress. Even though ASCO, NCCN, and others recommend all cancer patients be screened, AUA and ASTRO guidelines don't explicitly mention screening for emotional distress.
Patients are as divided as their doctors about the Gleason 6 name change idea. We found that 35% supported the name change, 35% opposed it, and the remaining 30% were undecided.
So, heading into the home stretch: future research. I should point out, in the context of the previous speakers, that our respondents were not very diverse, but we can't control who responds. Affluent, well-educated men responded to the survey. 19% had MDs, JDs, and other advanced degrees. Few Black men or Hispanic men responded. Are minority men not being offered AS? That's one question. Financial toxicity calls out for a deeper analysis. How real is it, and what can be done about it? Finally, more research is needed on whether the name change will help retain patients on active surveillance. Overcoming the atrocious dropout rate from AS should be a focus of research. 50% of us leave five years after, and 66% of us leave at 10 years after.
Howard Wolinsky: I'm Howard Wolinsky. I'm a Chicago-based medical journalist and a prostate cancer patient. First, I'll share my experience as a patient on AS. I celebrate my "pras mitzvah" this year, 13 years on AS. And then I'll present broader views based on a survey of more than 450 patients about issues faced by patients on AS, including renaming Gleason grade 1.
I experienced financial toxicity soon after I was diagnosed. Eight insurers considered me a bad risk for term life insurance because I left untreated a single core of Gleason 6. I previously only had preferred insurance rates. As a co-founder of support groups aimed at AS patients, I see and hear the emotional distress in the faces and voices of fellow low-risk patients. Some with Gleason 6 are driven to leave AS because they're going through "anxious surveillance." And Laurie Klotz, I see this in some Canadian patients. Renaming Gleason 6 as a non-cancer could help reduce the emotional distress and financial toxicity of low-risk patients like me.
I can share more than my opinion, and you can see on the chart some of our findings. Last fall, a coalition of support organizations including ASPI, ANCAN, and Prostate Cancer Support Canada, and my newsletter, TheActiveSurveillor.com, surveyed patients via SurveyMonkey. Our poster was presented yesterday at ASCO-GU. The Epstein Two, and you know who you are, and the other opponents of Group 1 being renamed argue that patients will end surveillance if Gleason 6 were redefined as a non-cancer. The survey showed only 5% of respondents said that they would quit surveillance if Gleason 6 were renamed. 82% said they would remain on it. 13% were undecided.
The Eggener Six, of which I was the sole patient, raised questions about Gleason 6 diagnoses causing financial toxicity. We only had anecdotal evidence, but in the survey, 16% of respondents said their insurance was canceled or their premiums jacked up because of a Gleason 6 diagnosis. Most had problems with term life, followed by health insurance.
And then there are the issues with emotional distress. More than 90% of the people in the survey said their urologist had not screened them, to the best of their knowledge, for emotional distress. Even though ASCO, NCCN, and others recommend all cancer patients be screened, AUA and ASTRO guidelines don't explicitly mention screening for emotional distress.
Patients are as divided as their doctors about the Gleason 6 name change idea. We found that 35% supported the name change, 35% opposed it, and the remaining 30% were undecided.
So, heading into the home stretch: future research. I should point out, in the context of the previous speakers, that our respondents were not very diverse, but we can't control who responds. Affluent, well-educated men responded to the survey. 19% had MDs, JDs, and other advanced degrees. Few Black men or Hispanic men responded. Are minority men not being offered AS? That's one question. Financial toxicity calls out for a deeper analysis. How real is it, and what can be done about it? Finally, more research is needed on whether the name change will help retain patients on active surveillance. Overcoming the atrocious dropout rate from AS should be a focus of research. 50% of us leave five years after, and 66% of us leave at 10 years after.