To: The House Committee on Oversight and Government Reform
Re: “Prostate Cancer: New Questions About Screening and Treatment”
March 4, 2010
We wish to thank the Committee for allowing us to present four important issues, on behalf of the thousands of men, their loved ones and their families, whom Malecare serves.
Founded in 1998, Malecare is our country’s first and leading Gay men’s cancer survivor support group and advocacy national nonprofit organization. All who work for Malecare are volunteers. Malecare publishes the worlds’ largest multi-lingual prostate cancer focused website, malecare.org and several online support groups. Read More→
Radiation Accidents–Tell Us Your Story
By · CommentsRegulators and researchers can only guess how often radiotherapy accidents occur. With no single agency overseeing medical radiation, there is no central clearinghouse of cases. Accidents are chronically under reported, records show, and some states do not require that they be reported at all. Read More→
Least Costly Alternative and Medicare
By · CommentsIrene Hayes, was denied payment of treatment prescribed by her physician and sued in federal court. Medicare had decided to only pay for the Least Costly Alternative (LCA), a treatment that her physician thought inadequate. As explained in the appellate court’s decision, under that policy, Medicare provides reimbursement for treatments only up to the price of their “reasonably feasible and medically appropriate” least costly alternatives. She won in federal district court, Medicare appealed the decision, and she won again in the Court of Appeals. Read More→
Some fun is going on,which is also raising awareness of Prostate Cancer. Just write “briefs” , “boxers,” “jocks,” or “commando” in your status. Just the word, nothing else. It will be cool to see if this will spread Prostate cancer awareness. How long will it be, when people wonder why all the men describe their shorts in their status.”
We’re copying a worldwide effort started by Breast Cancer activists, who are updating their facebook status with their bra color. In the spirit of emulation being a sincere form of flattery, why not?
The American Urological Association (AUA)’s updated Prostate-Specific Antigen Best Practice Statement first at the annual meeting of the AUA in April, has been published in the November issue of the Journal of Urology.
The statement includes the controversial guidance that the prostate-specific antigen (PSA) test should be offered to men starting at the age of 40 years — which one critic has said is not supported by “any convincing evidence.”
The update also reiterates the AUA’s position that prostate cancer screening with PSA is a matter of individual choice.
There is no single standard that applies to all men.
“The single most important message of this statement is that prostate cancer testing is an individual decision that patients of any age should make in conjunction with their physicians and urologists. There is no single standard that applies to all men, nor should there be at this time,” Peter Carroll, MD, said in a press statement in April.
Dr. Carroll is chair of the panel that developed the statement and is from the University of California, San Francisco.
Men should be informed about the “risks and benefits of prostate cancer screening before biopsy,” notes the newly published statement, which acknowledges that there is “strong evidence” that prostate cancer screening leads to overdetection and overtreatment.
http://www.medscape.com/viewarticle/713192″>http://www.medscape.com/viewarticle/713192
http://www.auanet.org/content/guidelines-and-quality-care/clinical-guidelines/main-reports/psa09.pdf
If we are to be successful as a cause, each of us needs to make a personal and heartfelt commitment to care about each other collectively… to see every man directly impacted by this disease, regardless of his experience both as it relates to his general human experience and his outcome as it relates to prostate cancer, as an ally and someone worthy of compassion… to respect and embrace our differences and diversity – and to act collectively… embracing all impacted by this disease as one family.
So let’s start here this Thanksgiving!
Let’s be thankful for the time with family and friends – it is limited for those men who have missed their opportunity for early detection and effective treatment and are struggling with advanced disease -and truly a gift to cherish.
Let’s also be thankful for physicians dedicated to promoting quality personalized healthcare that have spared some men from potentially devastating unnecessary side-effects associated with overly aggressive treatment of low risk disease.
Let’s commit collectively to advancing standards of care that support optimal quality and quantity of life for all men diagnosed with prostate cancer.
Happy Thanksgiving to you and your family!
Prostate Cancer Calendar 2010 with wives of Prostate Cancer patients, produced by the New Jersey Prostate Cancer Coalition is facing negative criticism for it’s purely heterosexual bias. Twelve New Jersey wives have posed nude for a prostate cancer awareness calendar
called, “Stand By Your Man: 12 Women in Support of a Cure for Prostate Cancer.”
With Gay and Bisexual men comprising fully 10% of all men diagnosed with prostate cancer, the calender actually hurts many men, who already feel unheard and disenfranchised from the prostate cancer survivor community,” says Darryl Mitteldorf, CEO of the national gay men’s cancerl survivor support and advocacy nonprofit, Malecare. “Surely, one month in their calender could have included a gay man’s partner, along with the wives..that would truly raise awareness for everyone.” said Mr. Mitteldorf.
info@malecare.com and 212-673-4920
Three leading prostate cancer doctors are volunteering with Malecare to answer your questions, online, at http://www.prostate canceradvice.org This website is just starting, so, please feel welcome to be among the first to get the ball rolling.
1: Geo Espinosa, N.D., L.Ac, CNS, RH (AHG) is the Director of the Integrative Urological Center at New York University Langone Medical Center.
2: Dr Charles “Snuffy” Myer is both Medical oncologist and prostate cancer survivor. He was a key player in creating AZT, Suranim, and Phenylacetate while working at the National Institute of Health.
3: Daniel P. Petrylak, M.D., Associate Professor of Medicine, and Program Director of the Genitourinary Oncology Section in the Division of Hematology/Oncology , Department of Medicine, Columbia University Medical Center.
Prostate Cancer Petition
By · CommentsYesterday, Doug Ulman from the Lance Armstrong Foundation delivered 65,000 signatures, from survivors and supporters of all kinds of cancers on a Peitition.
Our Petition to Make Prostate Cancer a National Priority has an amazing 16,000 signatures. The most successful prostate cancer grass roots effort in over ten years! Soon, I will be meeting with our leaders in Congress and the White House to ensure the voices of prostate cancer survivors are heard.
Will you help us reach our goal of 20,000 names? It only takes a moment to sign your name and share it with your friends, and every single name makes a difference: Sign your name and send the petition to your friends and family:
http://www.prostate cancerpetition. org
Where we stand on Prostate Cancer research funding is simple, and this is the critical moment to make your voice heard.
KEYS TO A SUCCESSFUL CONGRESSIONAL VISIT
By · CommentsKEYS TO A SUCCESSFUL CONGRESSIONAL VISIT
“WHAT TO EXPECT, WHAT TO DO AND NOT DO”
1. Have a message. Know what you want and be prepared to ask. Hill meetings can be quite short so it’s key to get to the point and make your point clear and concisely.
2. Meetings on the Hill can and will take place anywhere – in a Senator or Member’s office, in a committee hearing room, in the hall or in the reception area – don’t be surprised.
3. Expect interruptions, tardiness, canceled and rescheduled visits. Expect mistakes in scheduling, bells ringing, early departures and changes with whom you were expected to meet.
4. Visits should be scheduled with sufficient time to account for late meetings, to allow time to get from one place to another and you should expect down-time between meetings.
5. Dress professionally or in attire that reflects your affiliation with a larger group.
6. Your meeting should be planned to last no longer than 15 minutes – you may have the opportunity to go longer or you may be allotted less time.
7. Make your most important points clearly, succinctly and specifically.
8. Be interesting, informative and political. Relate your story and why the issue is important to you and other constituents like you.
9. Be honest, candid and relaxed. Use a conversational tone in your presentation – don’t be defensive or argumentative.
10. Expect a neutral reaction – Senator, Members and staff are rarely in the position to make firm commitments. A favorable response is a commitment to “do the best possible.” A more likely response is “we will consider your position”. Don’t be surprised by the lack of interest or negative response.
11. Don’t respond by being argumentative to a negative reaction.
12. Express appreciation to the person you are visiting for the time spent and the opportunity to present your case.
13. Remember, be prepared and equipped to state the reason for your visit: if you want action taken what action, and when or for whom, and why.
Have Fun and Good Luck!