Something good from the NEJM studies ~ Unity!

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Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 4/6/2009 1:54 PM (GMT -6)   
The following media release has just been issued this morning:

LEADING US-BASED PROSTATE CANCER ORGANIZATIONS DEVELOP JOINT POLICY AGENDA

Washington, DC, April 6, 2009 -- The prostate cancer education and advocacy community has come together to collaborate on and develop a shared agenda in the interests of the hundreds of thousands of American men who are at risk for a diagnosis of prostate cancer every year.

The leadership from eight leading prostate cancer organizations met on April 2, in Washington, DC, to explore how to effectively work together on specific policy initiatives to advocate for early detection and appropriate treatment of clinically significant prostate cancer, particularly among those men at high risk for this disease leading to the deaths of over 28,000 American men every year.

First, the eight organizations reached consensus
that:

-- We will continue to work with other cancer groups in support of increased federal funding for cancer research through the annual appropriations process to support the National Institutes of Health, the National Cancer Institute, and the Centers for Disease Control

-- We will continue to call upon Congress to increase funding for the Prostate Cancer Research Program at the Department of Defense.</li>

Second, the eight organizations will work closely together in support of four specific initiatives:

-- Passage of a Bill to create an Office of Men’s Health within the Department of Health and Human Services (HHS); this Office will mirror the fine work of the Office on Women’s Health

-- Passage of a Congressional resolution that there is a prostate cancer epidemic among the African American community, and that appropriate research and educational initiatives are needed to combat this epidemic

-- Passage of the Thomas J. Manton Early Detection and Treatment Act, which is focused on the provision of funds to support the early detection and appropriate treatment of clinically significant prostate cancer in underprivileged and underserved communities

-- Elimination of “least costly alternative” (LCA) policies for Medicare beneficiaries

Finally, the eight organizations agreed to work closely with other relevant cancer and consumer organizations to ensure that healthcare reform includes provisions for the early detection and appropriate treatment of clinically significant prostate cancer across all sectors.

The statement above has been approved by the following eight prostate cancer organizations:

-- Malecare Prostate Cancer Support(www.malecare.com)
-- Men's Health Network" (www.menshealthnetwork.org)
-- National Alliance of State Prostate Cancer Coalitions (www.naspcc.org)
-- Prostate Cancer International(www.pcainternational.org)
-- Prostate Health Education Network (www.prostatehealthed.org)
-- Us TOO International (www.ustoo.com)
-- Women Against Prostate Cancer (www.womenagainstprostatecancer.org)
-- ZERO – The Project to End Prostate Cancer(www.zerocancer.org)

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 4/6/2009 3:17 PM (GMT -6)   
This sounds like a very organized and positive step in the right direction, hope it all comes to frutition. Not only for us, but for the endless line of men finding out they have PC.
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsular, clear margins, clear lymph nodes 
First PSA Post Surgery   2/9 .05, 6 month on 5/9
 
 


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 4/6/2009 3:29 PM (GMT -6)   
I agree, David,
I am a member of most of these groups. I encourage those who come here to know who they are and if compelled, please join one or as many as you can. It does not matter your treatment modality, the degree of your case, nor any demographic that may concern you. This is a great announcement, perhaps the top news of 2009 thus far for prostate cancer patients. For years many of these groups competed with each other rather than joined forces. When I joined Prostate Cancer International I attended a meeting with them in Miami (with Livinadream ~ Dale) and made no bones that I was disatisfied by the lack of unity shown by prostate cancer advocacies. I told this to PCI co-founder Arnon Krongrad in person, and in many of my posts and conversations to PCI's other co-founder Mike Scott who posted the above at the PPMl and at the Infolink. I applaud this news as a great tool for providing a magnified voice of all of us survivors.

Tony
Age 46 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Geason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (January 13, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 4/6/2009 4:53 PM (GMT -6)   
Tony, you are doing a great work for the rest of us, and for those who follow our footsteps into the wicked world of PC. My hat is always off to you.
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsular, clear margins, clear lymph nodes 
First PSA Post Surgery   2/9 .05, 6 month on 5/9
 
 


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 4/6/2009 9:33 PM (GMT -6)   
Very kind words, David,
Thank you. But I am a follower who is learning how to help. It was a busy day on the advocacy front today. The buzz is wonderful and it's great to see the unity. I spoke or communicated with many of the big name advocates today, and the commitment is exceptional among the groups. It is very good I believe for all of us. Just maybe we will get that "Relay for Life" or "Livestrong" momentum. Very nice, indeed.

Tony
Age 46 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Geason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (January 13, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!

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