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Posted 2/23/2011 4:15 AM (GMT 0)
As an UsTOO leader I have found that the only way to get community things like prostate cancer support groups some airtime is to pay for commercial time slots or the buy a classified ad. I went and asked the local Susan G Komen Foundation director how they are able to get air time for the Walk of Life and the many other campaigns I see year around and they say they sometimes have to pay but very rarely. In fact they get greeted with reporters that want to do the story. They are able to talk to a paper of station community involvement team and voila ~ they usually get the time free. I contacted several stations and the Las Vegas Review Journal and nope not interested in an UsTOO mens prostate cancer support group. i get transferred to sales.

The frustrations of a chapter leader...ugh. I will be going to a meeting next week to discuss this with area doctors and see if we can get a sponsor to pick up the tab.

My question to our members. Has anyone seen advertising spots for community awareness for prostate cancer as it relates to support groups? I bet it's very rare...but I bet you have seen a lot of SGK stuff through a single year...

Tony
Posted 2/23/2011 5:02 AM (GMT 0)
Tony,

Frustrating, I know, to meet that wall of disinterest.  Probably PC also makes people, even in this day and age, squeamish or uncomfortable.  

 

I hope you can find some comfort in the understanding that breast cancer took decades to reach the level of funding and support it now has.  It took many extraordinary women to speak of their disease, countless times in many venues, meeting the same disinterest, discomfort, lack of understanding that PC survivors find nowadays.  BC was kept in a closet, almost shameful to say the words.

 

I find the med sites I monitor for current disease studies have so little on PC compared to others.  BC, diabetes, lung cancers, many other illnesses, all have the funding and are able to report findings in journals.

 

I have to say that hearing of some guy in some sort of limelight reporting he has prostate cancer is encouraging.  It's not that I would wish this disease on anyone, it's just it's an effective way to get prostate cancer awareness out to the general public.  But to get to the point that women did over many, many years, posing for the art show photography, giving interviews for media, publishing frank and open books on what happened to their bodies, their sex lives, their relationships, demanding funding for treatments other than that one brutal choice offered -radical mastectomies -well, that is just not happening yet for PC.   

 

My own husband has been reluctant to discuss his disease with anyone.  Some, not all, our family knows.  My friends know, and some of his, but not many in our town.  He is uncomfortable about the inevitable speculation and is. at the deepest level, a very private man. 

 

So, til the voices are heard often and loudly insistent, I don't know if it will get any easier.  I'd like to see the grassroots movements of local survivors banding together for the road races, wearing their t-shirts, the golf and tennis tournaments, the bowling leagues - whatever gets the guys in a t-shirt on a team, raising money for an PC organization.

 

You are a true pioneer, Tony, ahead of the curve.  To answer your question, I've seen no advertising spots.  Didn't someone just post a couple of things he came across this past week?    

Posted 2/23/2011 5:36 AM (GMT 0)
Hate to put it this way, but T&A get a lot of attention, even sharing with an owl over a plate of waste chicken parts, but dead nuts and woodless woodies are just offensive, it seems.
Posted 2/23/2011 7:16 AM (GMT 0)
You'd have thought enough CEOs, journalists, (advertising execs), politicians, movie stars, sportsmen etc get PCa to get it higher on the agenda?
Alf

Post Edited (English Alf) : 2/23/2011 3:53:00 AM (GMT-7)

Posted 2/23/2011 10:29 AM (GMT 0)
I’ve emailed NBC Evening News Making a Different and the local NBC news Tips section three times in the past year. Have come to the conclusion that if the story you’re reporting doesn’t include blood/guts and guns – they aren’t interested.
Posted 2/23/2011 11:14 AM (GMT 0)
Good attempts Tony atleast you were trying, so keep trying and maybe someone will find it worthy to print. I even tried a   www.meetup.com   website once for 1-2 months, mentioning a free PCa seminars/support group by my onco-doc whom has been doing his by word of mouth for like 10 years or more now. I got zero response that I knew of, I did mention the location of the group meetings and times...so maybe someone did show up, I just don't have a count. Perhaps others whom saw the sight just questioned it all thinking it was an advertising gimmick, which it is not. The doc does these cause he actually gives a darn. I wrote my local newspaper to print a PCa story, never happened.

The only time I had something published was when I wrote to Paact Newsletter and they did post my one pager thing I wrote on PCa back in later 2002 or 2003. You might try mentioning the PCa support groups on Craigslist, atleast it is free to place the ad. If you have a special PCa story perhaps Paact would print it: www.paactusa.org   (Rick Proffitt)
Posted 2/23/2011 1:59 PM (GMT 0)

Tony, your experiences are regrettable, but not surprising.  Other worthwhile causes meet similar indifference.  Just last month, a March for Life drew a third of a million people to Washington, DC, but nary a word about it on the national news.  Had the march been about something the media considers "important," it would have received considerable coverage.

For local media, if a story doesn't have a sexy news "peg," editors won't be interested.  Here in the Waukegan, IL, area, as in most parts of the country, the news staff has been reduced to just a few reporters, where there used to be 4 or 5 times that many.  As a result, they cover events here and there, but the paper has shrunkc and many newsworthy items go unreported.  If you literally write the story for them, there's a chance they will use it just to fill space, if for no other reason.

Even though prostate cancer kills something like 33,000 men per year, most are old and therefore their deaths are not seen as the devastating events they are for the families involved.  Maybe that's a product of the youth culture we live in.  Now, a feature story on some guy in his early 40's who has been diagnosed with advanced prostate cancer, and whose family is in dire straits as a result of the disease, and especially if that guy has some degree of prominence in the community....there's a story an editor might find newsworthy.  "If it bleeds, it leads" as they say.

An important civil rights leader died late last year in Chicago of prostate cancer, but most stories simply said that he died, or that he died of cancer.  After all, the man was in his 80's and due to die of something, I guess.

Every woman I know fears or respects breast cancer, but most men hardly give a thought to prostate cancer.  This is a man's issue, and until we get men interested in the disease, we haven't really begun the battle, have we?


Post Edited (clocknut) : 2/23/2011 7:02:41 AM (GMT-7)

Posted 2/24/2011 1:14 AM (GMT 0)
Tony,

To answer your question, no.

I feel equally frustrated and agree with all the posts in this thread.

I don't know the history, but I would imagine that UsTOO was named that because of the lack of interest.
Posted 2/24/2011 2:21 AM (GMT 0)
Hi Tony,

The community I live in has a PCa awareness week usually in June. It is sponsored by a local Urology group and the activities get a fair amount of local press. But, I must confess, nothing like the SGK billboards and local race for the cure. Does not get near the turn out either. (1000's vs 100's) News media want the big turnout. I do not know if the publicity is paid or not but suspect it is not and is reported on as community activity.

Don

Posted 2/24/2011 4:36 AM (GMT 0)
Don, what a coincidence,
This thread may have a happy ending yet. And the reason looks and feels like your post.

Tony
Posted 2/24/2011 5:44 AM (GMT 0)
Hi Tony,

I agree with much that's been said above, but the problem isn't that the media don't care, or that there are too few reporters.

I earned a living as a reporter, many years ago, and people with a cause have always blamed "the media" for lack of coverage. The reason the media don't cover a story isn't that they don't care, it's because the public doesn't care.

Clocknut is amazed that 300,000 people in Washington marching don't get coverage. Problem is their cause is only shared with relatively few people. The general public pretty much decided long ago that a woman had a right to decide what to do with her body. That's not a political statement. It's just fact. It's not a value judgement. It's just the way things are. A woman deciding may be reprehensible to some, but most just don't care about the issue. And, if John Doe, or Sally Doe don't much care, neither does the media. If the public cared as much as they do about what Tiger Woods is up to off the golf course, the media would be all over it like a dirty shirt. 300,000 passionate people don't make an interesting story in a nation of 308 million people where 300 million don't buy in.

The same is true for PCa. We care passionately, but most people out there don't. PCa doesn't ring their bells. We could have 300,000 people march in Washington and the media wouldn't much care, because their readers don't much care. People look at the media and see Susan Boyle turn into an overnight singing sensation and think it's the media doing it. It's not. It's the public. If the public wasn't totally wired into the Susan Boyle story it would have died instantly, not been dragged on for days.

So, IF a March for Life is ever going to get media attention, IF PCa is ever going to get the attention we'd like it to have, then energy spent blaming the media is energy wasted. The question is, why doesn't the public care? And the issue is, how can we make them care?

NEIrish makes lots of good points. She says, " It took many extraordinary women to speak of their disease, countless times in many venues, meeting the same disinterest, discomfort, lack of understanding that PC survivors find nowadays." It did. My mother is a 50 plus year survivor from back in the days when far fewer survived a radical mastectomy. So, I've watched the BC phenomena with interest. The tipping point, I believe, came NOT from women being out beating their own drum, but when husbands, daughters, children got involved. A special interest group is just that, a special interest group. But when people outside that group, connected to it perhaps, but not part of the passionate core, start to march, bang the drum, speak out, then others outside the passionate core pay attention.

IF we're to ever get big media coverage for PCa, then we must figure out how to follow the example of successful organizations as diverse as BC and The Nature Conservancy (NC) NC has assets of $5.64 billion. It blows Greenpeace out of the water. (Love that metaphor, lol) Look at how the two operate, how they enlist public support, how NC has appeal far beyond the die-hard enviornmental lobby of passionate people.

The key, I believe, isn't spending money advertising. It's a focus on bringing on side mothers and daughters and fathers and sons who don't have PCa. I think trying to do that in a nation of 308 million is a tough sell. I'd find one small town, community, where there was already indication of good support and then build on that in that limited sphere. And, when it was humming, I'd go to the town/community next door and get it going.

The town by town approach may not be the way to success, but I am convinced success for advocacy organizations is directly proportional to how they frame and spin their message in such a way that John and Sally Doe start to care.

Sheldon AKA Sleepless
Posted 2/24/2011 7:01 AM (GMT 0)
Sheldon I don't blame the media as the sole blame...lol. I was just venting. I know

And I take yours and everyone's posts to heart. Thanks all for the replies, too. As I mentioned earlier things are looking better today.

On the advertising, I think we have to try it. Our role is prostate cancer awareness, education and support. We will be doing other constructive things such as Father's Day events and/or awareness workshops at senior centers or churches. But our effort to advertise will let 30,000+ diagnosed men and their families living in Las Vegas, and the surrounding communities, know that there is a place to go to talk to their peers and receive valuable education and support for free.

Thanks again to all.

Tony
Posted 2/24/2011 2:13 PM (GMT 0)
Yeah, Tony, I knew you were venting --- Lord knows I vent enough my self to recognize it. I understand your frustration.

What I was trying to do was to go beyond the media venting and try to identify the core problem we have in PCa NOT being like BC, or the Nature Conservancy --- what is it they do, or have accomplished, that's different from what we do, or have accomplished? --- so that we might think of how to emulate their success.

I think your plan to advertise is fine. One issue is targeting your audience. With advertising you pay as much for a "hit" on an 80 year old woman reading the paper as you do on a PCa person. The one place all PCa people gather, pass through, is the urologist's office. If you could put brochures and a poster into every urologist's office, that would be cost effective.

It may also be that PCa no matter what will never gain the public status of BC. It may not be an awareness issue at all. It may just be that aware, or not, the public, the general public, won't care. Picking up on what NEIrish had to say, it may be that PCa men, and their families, just don't care the way BC women and their families care.

Look at this forum. People come in distress, they get treated, they pull zeros, they move on. They don't dwell on it. It's not fertile ground to build a BC like organization. It may be a double whammy "male" thing. On one side, a macho attitude to their own disease, and on the other a protective gene that flips in to 'protect women.'

Tony, I applaud you for all you do to help others, especially our fellow PCa guys and their families. Good on you!

Sheldon AKA Sleepless
Posted 2/24/2011 3:22 PM (GMT 0)
Tony....all the best to you and your efforts to raise awareness of this disease.

My only thoughts are this. There is a local radio station here in Dallas, that daily promotes Prostate cancer testing sponsored by one of the hospitals here. The problem I see is this. They tell the listening audience that Prostate cancer is the easiest and the most treatable form of cancer. While that statement is very true, it doesn't bring any passion or sense of urgency to the picture. Almost like saying Prostate cancer is no big deal. If you get it, so what...it is easily treatable and not life threatening at all. Breast cancer on the other hand is scary, very scary...almost a death sentence not too long ago.

How do you expect men or the general public to take this cancer seriously or with any interest when they hear that only 1 in 35 men with this cancer are at risk of dying from it and in the same breath it is easily treatable and non life threatening.

And I can also tell you this...the SGK is a money maker for businesses and the community. I hate to say it...this foundation had a very important role in awareness in the beginning...now it is just a money making machine that has exploited a worthwhile cause.
Posted 2/24/2011 5:13 PM (GMT 0)
@Sheldon,
Thanks, man...those are kind words...

@Les,
I am resolved that we need sponsors to pick up the tab for this years campaign. But I assure you that we will be quite careful of how things are worded. My goal is to not sugar coat anything. The fact is that prostate cancer CAN be a terminal illness, and at very least it is a chronic illness that affects men and families for many years ~ pretty much for the rest of their lives. If any of the 30,000+ in Nevada hear it that many will participate in our support and awareness projects.

I believe that we can learn a lot from SGK. I applaud their efforts and results. I believe that number one location to bring awareness is at the sporting events that are predominently men viewers. Yet SGK owns that market. I see pink footbal jerseys, baseball bats, hockey pucks...etc. Almost nothing Blue...

That's too much for a guy like me to conquer. Instead I will try some things in our own community...It should be a fun year..!?

Tony
Posted 2/24/2011 5:27 PM (GMT 0)
http://www.ustooevents.org/site/PageNavigator/2010_Chgo_Splash

Tony, maybe this UsToo Chicago event will help spur some ideas for you...

Posted 2/24/2011 5:49 PM (GMT 0)
Casey I am quite familiar with it.

UsTOO International headquarters is based in Chicago. Tom Kirk, the current CEO, regularly does local events and has plenty of sponsors to do them with. I am in contact with Tom about events and things for Las Vegas. He will likely be participating. Tom will also help us on occasion, too. Currently, we get out HotSheets and brochures through the mother ship.

Our biggest support however has come from none other than ~ the American Cancer Society. The very group whose medical director regularly sends an anti-screening sounding message out was responsible for help to arrange a screening event for the poor here in Las Vegas.

Thanks for the post...

Tony
Posted 2/24/2011 6:02 PM (GMT 0)
Tony,

The sports side is always a good venue, but then along come the lame commercials like the ones posted earlier. "Oh, check your PSA, but let's mess with the old lady's water glass first". The other one on the site was worse.  That sort of ad is almost counter-productive. Maybe they will get through to some, but what about the rest of the world that doesn't have cable / doesn't watch sports / doesn't care about commercials? The women's testimonial idea was good, maybe they will get through to the wives & girlfriends.

You would get more attention by putting a section into a Hooter's menu - "neglect your PSA, and in a year or two you'll just be here for the wings!"

 

Posted 2/24/2011 6:23 PM (GMT 0)
142,
That last sentence put a smile on my face...but what a great idea.

I agree with your comments that TV and newspaper is not enough ~ it's just a starting point. We'll learn much about it after the effort. But Also I plan on hitting where I can like church bulletins, and senior centers, too.

Just an example of costs, to advertise in my church bulletin it is $40.00 per month and a one year commitment is required. This is for a rather small rectangle. My church does not control the advertising charges, but rather a publishing company provides the service free to the church and sells that last couple pages for ads that cover the costs of the bulletins. Forty bucks a month for one church! So to hit my entire diocese would cost over a grand a month....ugh! From what I understand we can get a break on multiple bulletins but I don't know what that break is as yet.

Ugh!

Tony
Posted 2/24/2011 11:24 PM (GMT 0)

IMHO.

If I look at the attention that breast cancer gets in my small community relative to PCa, there is absolutely no comparison. PCa is an occasional conversation blip... All the local politicians are out, full media, etc., for anything to help the breast cancer community. All the runs, the BBq's, the picnics and info sessions. And it is heartwarming and well deserved.

As cynical as it may sound, if the politicians are there, there are votes to be counted. And that is reflected in monies spent or allocated by tax dollars and reflected in private donations.

I think this has been discussed here before. It seems the gals are so much better at organizing these things than maybe men are. And they have been at this awareness and progress in many ways for a long time...and are very good at it.

A good model to follow if we want to increase (public and media) awareness, and funding of prostate cancer.

Again, MHO.

Mike 

li'l error edit

Post Edited (mikey1955) : 2/24/2011 4:30:20 PM (GMT-7)

Posted 2/25/2011 12:50 AM (GMT 0)

142 - I think you hit the nail on the head in your 1st comment.  People can relate to "Save the ta tas" or "save 2nd base", etc...but who wants to save a prostate...in fact, most people are wondering what is a prostate...and doesn't it have an 'r' in the word.

----------------------------

Tony,

Seriously, I am willing to offer my time and energy to help raise money or whatever to raise awareness and keep the research moving forward so we can have more, better and quicker therapies and who knows - a cure. 

But, frankly, I don't know where to begin.  I was thinking about putting a website together to provide info. and a donation page, etc... but I feel I am reinventing the wheel...

Why don't we create a HW PC Team, come up with a mission, brainstorm ideas, get a plan together and do this in a well thoughtout approach.  Most men are older when they get PC.  These men (and women) all bring decades of work experience that would prove useful to the team and they all have a common goal with regards to PC.  And they are from all over.  I see a dream team here.  We would certaintly reach a lot more people than if we all did our own thing.

I don't want to do this simply for the sake of trying...I see a real opportunity to make a real difference. 

Jerry L.

Posted 2/25/2011 1:36 AM (GMT 0)
@Mike,
We have a long ways top go when compared against the BC stuff. Again my goals for our group is to increase membership in Las Vegas because it would be lofty of a goal to do what you outlined. I do agree that BC has more financial and political backing. Two years ago the nations top prostate cancer lobby ~ ZERO-The Project to end Prostate Cancer ~ sent out flyers to every member of congress about DOD funding for prostate cancer and three faces and stories were included including the pictures and story of yours truly.

@Jerry,
Let's talk. I have a better idea that may include this sites owner, Mr. Peter Waite or the InfoLink's Mr. Michael Scott. Wouldn't it be great to add a national weekly or monthly webinar for prostate cancer?

Tony
Posted 2/25/2011 1:52 AM (GMT 0)
Hi, Tony. The rumor mill says that this September will be PC awareness month in the NFL. Players, refs, cheerleaders will be wearing blue as part of the uniform and I don't know if it will go on for three months like BC awareness did. I got a little weary of seeing pink all the time. Perhaps commercials will air ( besides Flo-Max) to educate the men on the simplicity of PSa testing, etc. I think that sponsorship by the NFL will hit the male viewer a little closer to home than the BC awareness campaign.

On the local front, our friend David E. does get some television spots for his foundation with the fund raisers he organizes. I always catch them on the local news station, one in particular, and kudos to them for airing them.

Bob
Posted 2/25/2011 1:55 AM (GMT 0)
Tony,

Mike has helped me so many times. He's great.

Feel free to email me or give me a call.
Posted 2/25/2011 1:56 AM (GMT 0)
I am a Knights of Columbus Member and have contacted the next State Deputy for Ohio asking if the Knights (fraternal org.) would consider having a program for its members on P.C.

Haven't heard yet but will bug him in future.

Any K of C or Shriners, we should join together to do this as fraternal brothers.

Tom
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