Us TOO Advocacy Alert  
November 4, 2011

From: Thomas Kirk, President and CEO

Subject: Please Take Action: USPSTF Deadline is Approaching - Comments Due Nov. 8th

I, like many others, am preparing comments to meet the USPSTF Tuesday, November 8th deadline. I am asking your HELP to do the same, and to ask others to join us.

As you must know by now, October was filled with concern and surprise as we became aware of the Draft recommendations issued by the U.S. Preventive Services Task Force (USPSTF) on October 7th against prostate-specific antigen (PSA)-based screening for prostate cancer. The media was quick to report USPSTF’s change from a grade “I” to a grade “D” recommendation against this service. This recommendation applies to men in the U.S. population who do not have symptoms that are highly suspicious for prostate cancer, regardless of age, race, or family history.

The good news is we were able to see much news about prostate cancer during October “Breast Cancer Awareness Month.” Many of us in the prostate cancer world have been awakened and have become more active; discussing this issue, reading the report, finding out who this group is, and responding in a variety of ways. I have seen many comments and heard of steps taken by many individuals and groups…all of this is positive, but the issue requires us to continue to be active now and in the future.

For example:

This event has so many, so active and in Washington, DC earlier this week Tom Farrington from PHEN and others gathered for the Prostate Cancer Rally to Live event. I believe, one of the most pressing and important action steps is to comment to the Task Force before next week, Tuesday, November 8th at:

You will find that the comment page asks for comments in several areas:
  1. How could the USPSTF make this draft Recommendation Statement clearer?
  2. What information, if any, did you expect to find in this draft Recommendation Statement that was not included?
  3. Based on the evidence presented in this draft Recommendation Statement, do you believe that the USPSTF came to the right conclusions? Please provide additional evidence or viewpoints that you think should have been considered.
  4. What resources or tools could the USPSTF provide that would make this Recommendation Statement more useful to you in its final form?
  5. The USPSTF is committed to understanding the needs and perspectives of the public it serves. Please share any experiences that you think could further inform the USPSTF on this draft Recommendation Statement.
  6. Do you have other comments on this draft Recommendation Statement?

I have seen several useful things to help you prepare your response.

Finally, let me mention that former Us TOO Board Chairman, Lew Musgrove, spoke to me about calling for action from Us TOO support group leaders. Current Us TOO Board Members, as well Lew and I, agree that your HELP is needed. Here are some points we would like to make.

  • Prostate cancer affects more men than any other cancer except skin cancer, and it kills more men annually than any cancer except lung cancer.
  • We know prostate cancer does not have symptoms in its early stages.
  • We all have a right to know if we have cancer and be empowered, well informed and active as we talk to our medical health care team to make decisions.
  • We know some populations are at risk such as African Americans, men with prostate cancer in their families, and men exposed to Agent Orange.
  • The PSA test has its flaws and limits, but it is the best test we have for now. It should continue to be used as researchers seek better and more specific tests.
  • Testing does not have to mean over diagnosis or over treatment. More is known about active surveillance approaches than ever before.
  • Data exists that demonstrates a decrease in metastatic disease at time of diagnosis and a decline in mortality rates over the last decade.
  • The U. S. Preventive Services Task Force grade “D” recommendation presents a series of potential problems such as retrenchment from Medicare and insurance coverage of PSA testing.

I am aware that no single email can contain all the information you may need. There is a great deal of information and lots of opinions are out there for you to use. For now, and as we go forward, action is needed. Please join in and make your voice heard before Tuesday, November 8th.

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