Prostate Cancer Roundtable announces updated policy agenda


According to a media release issued yesterday, “the members of the Prostate Cancer Roundtable have updated their shared, national policy agenda” which will act as the basis for discussions with U.S. policy makers in 2011 and beyond.

The fundamental priorities of this policy agenda (which are as follows:

  • We seek an increase in the appropriation to support the successful work of the Prostate Cancer Research Program within the Department of Defense’s Congressionally Directed Medical Research Program – from its current $80 million to $120 million per year.
  • We continue to work with the broader cancer community to support increased federal funding for cancer research through the annual appropriations process for the National Institutes of Health, the National Cancer Institute, and the Centers for Disease Control.
  • Within the annual appropriation for the National Cancer Institute, we seek an increase in the current funding of $294 million for basic and translational prostate cancer research to $400 million per year.
  • We seek passage of a bill to create an Office on Men’s Health within the Department of Health and Human Services (HHS) that can mirror the 20-year successes of the Office on Women’s Health established in 1991.
  • We support legislative, research, and educational efforts needed to effectively combat – and ideally to eliminate — the epidemic of prostate cancer among African American men.
  • We are concerned about efforts to make cost a primary determining factor in coverage of specific products and services, including the application of LCA to Medicare benefits.
  • We seek the establishment of a Prostate Cancer Scientific Advisory Board for the Office of the Chief Scientist at the US Food & Drug Administration, with the goal of accelerating the real-time sharing of the latest research data and the movement of new medicines into clinical practice in the best interests of patients.

The Prostate Cancer Roundtable is a group of independent, patient-centric, not-for-profit organizations that cooperate to foster the development of policies supporting high quality prostate cancer research, the prevention and early detection of clinically significant prostate cancer, the appropriate care and effective treatment of men with prostate cancer, and the appropriate education of all men at risk for this disease.

Given the realities of the current fiscal environment, it may take some very hard work to achieve all the goals set in this agenda … but “nothing ventured, nothing gained.”

The 12 current members of the Prostate Cancer Roundtable — all of whom signed off on the above policy agenda for 2011 — are:

Prior media releases from the Prostate Cancer Roundtable have commonly been issued over the name “America’s Prostate Cancer Organizations.”

Please note that Prostate Cancer International is the “parent” of The “New” Prostate Cancer InfoLink.

7 Responses

  1. Any idea what these 12 stout organizations might have in mind in their aims for “… the appropriate education of all men at risk for this disease” or where I can find their current efforts, apart from the scaremongering media releases giving often incorrect information about the overblown risks of prostate cancer mortality?

  2. Life is not perfect Terry. As you well know, organizations may be able to agree about a lot of things, but that doesn’t mean they all agree about every detail.

    I can only speak for Prostate Cancer International. And as you also well know, I believe that “appropriate education” includes the fact that many men with prostate cancer cells in their prostates are at minimal risk of any clinical problem. Of course I would also like to be able to differentiate accurately between those men and the ones with a serious risk for metastasios and prostate cancer-specific mortality.

  3. Mike,

    I don’t expect perfection but I do think that the views you expressed:

    … “appropriate education” includes the fact that many men with prostate cancer cells in their prostates are at minimal risk of any clinical problem.

    should be stated loudly and clearly by these organizations. But they are not. There is a good deal of money spent on “creating awareness” but a good deal less on trying to help the man who, having been “made aware” finds himself getting some really bad advice from some of the doctors.

    As you know I have read literally thousands of the experiences men relate about their diagnoses and what they have been told. It still makes me mad when I see a man told that because his PSA went up from 2.0 to 2.7 (the precise level that it was 6 years ago when he had a negative biopsy) it is time for another biopsy, since the rise is clear evidence of prostate cancer activity. No, it’s not!

    Or how about the man of 49 whose PSA went up by 0.80 ng/ml, who was biopsied as a result, who had one miniscule positive core of Gleason 6 cancer in a total of 12 biopsy cores who was told that the rapid increase in his PSA indicated an aggressive cancer and who, as a result, had surgery 3 weeks after his biopsy. Did he need to do that? No, he didn’t.

    There are so many more, so many, many more — and I just wish more effort was put into informing instead of frightening men.

    You say you would like to differentiate accurately between the men who don’t need immediate treatment and those who have a serious risk for metastasis and prostate cancer-specific mortality.

    We know who the latter are. They are men with a T4 GS 8 or greater diagnosis with a rapidly doubling PSA. Those are the men who are at a “serious risk for metastasis and PCa specific mortality.”

    The others, not so much.

  4. Dear Terry:

    I understand your frustration. However, change takes time. And there will always be bad physicians. This is hardly a problem unique to prostate cancer.

    With regard to the ability to discriminate between the men with indolent disease and the ones at risk for clinically significant disease, I think you are missing my point. If a man is diagnosed with T4, Gleason 8 disease, he already has clinically significant disease. Obviously we need to treat this man, but it may already be too late to cure him. I want a test that is able to accurately identify which of the men initially diagnosed with a small focus of T1c, Gleason 6 disease are at high risk for early progression to T4, Gleason 8 disease if we do nothing as compared to those who will still have T1c, Gleason 6 disease 10 years later.

  5. Hello. I’m curious … Does the Prostate Cancer Roundtable support this bill?

    Also –- what is the Roundtable’s position on this bill?

    Mary

  6. Dear Mary:

    For a variety of complex reasons, the Prostate Cancer Roundtable never took a group position on the PRIME Act, although a number of individual members of the Roundtable did certainly support it.

    With regard to the Blue Water Navy Presumption bill, no member of the Roundtable has brought this bill to the attention of the members of the Roundtable (that I am aware of). Also as far as I am aware, neither Rep. Filner nor any of his staff have requested the support of the Roundtable for this bill.

  7. Thanks!

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