Introducing PCPC3


The following statement was issued this morning by a new, patient-centric group of prostate cancer education, advocacy, and support organizations here in the USA. As indicated below, Prostate Cancer International — the parent organization behind The “New” Prostate Cancer InfoLink — is a founder member of the new group.

PCPC3 — the patient-centered prostate cancer collaborative coalition — was initially conceived and discussed by a group of patient education and advocacy organizations attending the annual meeting of the American Urological Association in New Orleans on May 17, 2015.

A second meeting of representatives of founding members of the group was then held in Chicago at the annual meeting of the American Society of Clinical Oncology on May 31, 2015.

PCPC3 is a group of independent, not-for-profit, patient-centric organizations whose primary, shared goals include the education and support of men with diagnosed with prostate cancer, their family members and care-givers, and all men at risk for prostate cancer.

The founding members of PCPC3 are:

The members of PCPC3 are dedicated to

  • Ensuring that all adult males and their families understand and are aware of their risk for diagnosis with prostate cancer
  • Providing information, education, and support for men who are diagnosed with prostate cancer — and for their care-givers and family members
  • Advocating for and educating patients about opportunities for high-quality diagnosis, management, and treatment of prostate cancer and its consequences by primary care and specialist clinicians of all types
  • Advocating for advances in the diagnosis and management of prostate cancer over time
  • Eliminating prostate cancer as a significant clinical risk factor to the greatest extent possible

and to working together, in collaboration, toward the achievement of this mission.

For additional information please see the PCPC3 web site at www.pcpc3.org.

24 Responses

  1. It’s great to see organizations forming to work together but proof will be in results.

    Unfortunately I see nothing related to improving awareness on their joint mission. We need national awareness!

  2. Delighted to see a new collaborative group – especially one that includes Malecare and UsTOO at the same table.

    Saddened that the two largest prostate cancer organizations by budget, PCF and Zero, are not represented.

    Also disappointed that the word “Awareness” appears nowhere on the web site other than in the phrase “Prostate Cancer Awareness Month” … Was that deliberate?

    Onward and upwards …

  3. Dear Rick and Dominic:

    (1) Both PCF and Zero were invited to join. PCF felt that since its mission is almost exclusively focused on seeking better treatments for advanced prostate cancer, they did not meet PCPC3’s criteria for eligibility.

    (2) If you look at this page on the PCPC3 web site you will see that the very first priority in the organization’s mission is “Ensuring that all adult males and their families understand and are aware of their risk for diagnosis with prostate cancer.” I think that addresses the “awareness” issue! The exact same sentence appeared in this morning’s announcement (see above).

  4. Mike:

    There is a massive difference between men being personally aware of their risk for diagnosis, and raising the national level of awareness of the extent and impact of this disease.

    Both Dom and I are using “awareness” in a context well beyond the personal level – as Dom says, “National Awareness”!!

    We hope PCPC3 gets this concept — otherwise it may be DOA!

  5. Mike,

    Also want to add it is very disappointing PCF sees PCPC3’s mission beyond its bailiwick. Two of the five objectives clearly apply to PCF:

    (1) Advocating for advances in the diagnosis and management of prostate cancer over time
    (2) Eliminating prostate cancer as a significant clinical risk factor to the greatest extent possible

  6. Dear Rick:

    (1) With respect to PCF, you’ll need to talk to them, not me. I don’t make decisions on their behalf.

    (2) With respect to what you and Dom mean by “Awareness” I am sorry but I categorically disagree with you (and that comes from someone who owned an advertising agency for most of the past 25 years). All “awareness” is personal and individual. It might seem amazing to you but I assure you that it is true. It doesn’t matter how much noise you make about something. What matters is whether the target audience hears a very specific message or set of messages and takes the appropriate action. PCPC3 is extremely clear in its mission. I repeat: “Ensuring that all adult males and their families understand and are aware of their risk for diagnosis with prostate cancer.” You (and perhaps Dom too) are talking about the process used to achieve that goal, which is a whole different matter.

  7. Perhaps we are parsing words. I am speaking about reaching an audience who may have no connection to prostate cancer but might donate to the cause anyway — as many do for breast cancer.

    You can argue that “all adult males and their families” must cover the whole population. I am not certain of that. Moreover, I also speak to the epidemic extent of this disease that we need to make part of the national consciousness, as has breast cancer. Most people are shocked to learn that more men are diagnosed annually with prostate cancer than breast cancer.

    Increasing national awareness will increase funding, that in turn will flow through to research, support, education, advocacy, and more awareness. Speaking to men about the risk of diagnosis is just a fraction of the awareness of which we speak.

  8. Mike

    You are spot on (again) about the messaging/”Awareness” issue.

    A lot of comparisons have been made between the organization of breast cancer advocates vs prostate cancer advocates and why their is such a disparity between the two in terms of national awareness. In my opinion it comes down to a basic difference between how men and women view medical issues. This difference is not limited to cancer. Women are generally more open and willing to discuss health issues than their male counterparts. Also, men are much more likely to publicly support issues that may affect moms, sisters, or daughters.

    Most men don’t want to hear about prostate cancer or really any health issues and when you attempt to get them involved in the cause it just does not resonate. I mean do most guys sit around talking about their prostate health? Do they really care to share? Will they call a buddy and say, “Hey did you get your DRE done and what did the doctor say?” My answer is not in my circle of friends and associates. Now can you imagine a group of women discussing mammograms and or performing a self breast exam. My answer is yes I absolutely can. I have three sisters, a mom, a wife, and two daughters. I am sure that I care more about female health issues than I do about prostate cancer.

    In addition, the national prostate cancer message is not clear. What is the tag line? Even the experts can’t agree on what to do and when. It is clear many men have been over-treated. This gives men an “out”. It is also a mostly a disease that affects older men so this is another “out”.

    So from my perspective it needs to be personal message delivered by a medical professional. It should be focused on the need to understand their risk and whether or not to be tested and when. And, if tested, a clear understanding of risks and treatment side effects.

    Anyway just my opinion.

    Bill

  9. Dear Rick:

    If “all adult males and their families” doesn’t include about 99% of the total population, I cannot imagine who has been excluded other than non-adult male orphans and women with no other male family members at all.

    Otherwise, please see the comment from Bill Manning that is also just about the be posted.

  10. I for one want see awareness public service announcements like the Zero Superman ad or the Evan Hollyfield/Brian Custer PCF spot presented during national network primetime sporting events with a common, cohesive message. Should be a drum beat. Not just in September.

    Perhaps the newly energized synergy of PCPC3 will drive something similar?

  11. Dear Dominic:

    If you can help to raise the sorts of money required to do this type of awareness marketing, I am sure PCPC3 would be interested, but PCPC3 has no more money today than its members had yesterday, and most of these organizations are running on a very short shoestring by comparison with the Prostate Cancer Foundation. Even PCF can only afford to do that sort of thing occasionally.

    And then … there are the points just made by Bill Manning. … Would most men even listen anyway?

  12. As I clearly said above, you will argue that all males and their families covers the population – and you did! But you missed the point that informing men of their risk for disease does not build the type of awareness needed to raise funds.

    In response to Bill and Mike ….. I don’t buy it!! PCUK seems to have done a helluva job raising national awareness despite male reticence. And a helluva job raising funds – more than $30 million p.a. . We need to huddle with PCUK because British men are arguably as or more inhibited than their US counterparts.

    Secondly – as you rightly point out, Mike, PCPC3 has no resources. I just finished posting that on the Inspire forum. That is why the absence of PCF, Zero and Malecare does not bode well. I have to ask if the Round Table history effected their decision not to collaborate.
    The Holyfield/Custer video clearly makes my point that the PCPC3 objective:
    “Ensuring that all adult males and their families understand and are aware of their risk for diagnosis with prostate cancer.”
    … is well within the PCF bailiwick. So that makes three of the five mission objectives.

    Until all the organizations can work together, the message will struggle to succeed.

  13. I think if there was a regular, consistent message aired during nationally sports events, etc., yes, spouses and significant others if anything would prompt men to get screened.

    As for funding, I understand that a pot of gold didn’t fall out of the sky but I can’t fathom why the prostate cancer organizations haven’t tapped into some of the high powered executives that can donate and perhaps provide access to air time. I know this isn’t easy stuff.

    All the best!

  14. PCPC3 is a wonderful step in the right direction and this kind of collaboration has been shamefully lacking until now.

    When Mike says, ‘ “Ensuring that all adult males and their families understand and are aware of their risk for diagnosis with prostate cancer.” You (and perhaps Dom too) are talking about the process used to achieve that goal, which is a whole different matter’, I think this begs the question, What else could the “process” be, other than a national awareness campaign, as Rick and Dominic have proposed?

  15. Rick:

    What do you want me to say? Malecare is a member of PCPC3. I can’t tell PCF what to do.

    I absolutely agree with you that “Until all of the organizations can work together” delivering the message that you are driven by will be extraordinarily difficult to achieve.

    I have spent much of the past 25 years trying to get all of the prostate cancer groups to work closely together. This is my third attempt. I do not at all miss the point that changing the national perspective about prostate cancer will help to raise money for research. However, as you may have noticed, America is one of the places where Movember has been least successful compared to places like Australia, Canada, and the UK.

  16. Dear Dominic:

    I can assure you that PCF, over the years, has made enormous efforts to “tap into” the high-powered business community. Michael Milken certainly used to do that personally, and for all I know he still does. But you are correct … it isn’t “easy stuff”. Even PCF has been unable to raise the sorts of funds that I believe they thought would be possible.

    Mike

  17. Dear Len (and Dom and Rick):

    I can’t speak for the whole of PCPC3, but I would be extremely surprised if there were any of its members that didn’t want to see some form of national awareness campaign about prostate cancer — preferably one that was also linked to raising money for research.

    Another thing that I have personally always wanted to develop and implement is a national prostate cancer ambassador program designed to ensure regular, simple distribution of information about prostate cancer through schools, churches, businesses, trades unions, community centers, etc., on a local level, with at least one identifiable and well informed “advocate” in every town in the nation. I have tried this a couple of times, but it is hard to get men to work together well on this sort of thing. Individual egos tend to get in the way.

  18. Mike:

    You are right. Men often want to do good but our egos do get in the way. Hard for some to put that aside. I do think this PCF Hollyfield ad might resonate with well with T-fueled men — “Man Up”.

    IMHO sticking your head in the sand is not being a man. I have no T and I “Man Up” every day. Men need to Man Up for themselves and their families. I also see “manning up” is supporting a cause that 2.7 million live with and 28,000 a year die off. Sorry to pontificate.

    I truly wish PCPC3 well. Perhaps they would benefit from have some of us guys to help with projects and put our egos aside.

    Dominic Marrese

  19. Dear Dom (and Rick and others):

    PCPC3 is 3 days old. There are a lot of things that it may be able to accomplish over time. The first necessity is that we really do all learn to work together on a regular and ongoing basis. If we can do that successfully, and perhaps pull some more members onto the team, then who knows what we might be able to achieve.

    Conversely, at 3 days of age, if we started promising to do things that no one else has successfully achieved in the past 30 years, we would be setting PCPC3 up for a very rapid fall … and that really wouldn’t be smart at all!

    Thank you for the good wishes.

  20. Fully understand Mike. Be well.

    Dominic

  21. Mike:

    First, kudos to you if you were the catalyst to make PCPC3 happen. A group of us have been working on something similar, and it has been on my mind to speak to you. You made something happen where many have failed — hopefully the results will be forthcoming.

    Second, my error — I wrote Malecare when I was intending Movember. Movember may not have had the success seen in UK, Canada, or Oz but I believe they still raised $20 million stateside last year. I am looking for an introduction to meet with them next week when in LA. Can you help? Let me know offline ….

    Mike … if you feel national awareness is a mutual goal of all PCPC3 members, can it be incorporated into your mission statement?

    In the words of Ali G, my Habs alum … RESPECT!

  22. Rick:

    (1) Alas … I have no specific contact at Movember that I can put you in touch with, and their overall mission is male health, not just prostate cancer. As far as I am aware, here in the USA they have historically donated all the money they raise to PCF and to Livestrong.

    (2) I don’t know that “national awareness” in quite the way you envisage it is necessarily a mutual goal of all PCPC3 members at this time, but I am willing to raise the question at our next meeting.

    (3) The development of PCPC3 was a shared opportunity recognized by several of the members. I wouldn’t claim to have any greater role in this than others. If there are other groups that want to join us (either as full members or as affiliate members) please let me know … since you say that “A group of us have been working on something similar.”

  23. Thanks for the responses on all accounts, Mike.

    We are a loosely affiliated group of survivors who would not qualify for even affiliate recognition at this point. Maybe sometime in the future if we ever become a 501c3.

  24. As a member of a few of those organizations, I applaud your effort Prostate Cancer International. As usual, you bring common sense to advocates groups. Thank you so much for this and your many other efforts for prostate cancer at so many levels!

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