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CALL TO ACTION RE: PSA SCREENING FOR PROSTATE CANCER

mrspjd
Posts: 688
Joined: Apr 2010

ADVOCACY ALERT

All,

Here’s your chance to take a stand and let your voice be heard re the recent United States Preventive Services Task Force’s (USPSTF) draft recommendation against PSA based screening for prostate cancer.

Please take a few minutes to read the email below from Tom Kirk, President & CEO, Us TOO International Prostate Cancer Education & Support Network. Use the links provided in the email to review the controversial USPSTF's draft report. Then, we hope you will join us in voicing your comments on the USPSTF's website beginning Tuesday, October 11, 2011, and running through November 8, 2011. If the USPSTF's recommendations are accepted, they are sure to have a major impact on the current and future PCa community.

Thanks for your support.

Mr and Mrs PJD
********************

Dear Friends,

By now, you may know that the United States Preventive Services Task
Force (USPSTF) has prepared a draft recommendation against
prostate-specific antigen (PSA)-based screening for prostate cancer.

We are on this. In a story in today's New York Times, I was able to
provide a quote in response to the news, and have been speaking with
other media all day today. Read the full New York Times story here:
http://www.nytimes.com/2011/10/07/health/07prostate.html?hp

Due to pressure from the media, the USPSTF has posted their draft
report on their website here:
http://www.uspreventiveservicestaskforce.org/uspstf12/prostate/draftrecprostate.htm

The Task Force will be accepting comments on this draft
recommendation statement beginning on Tuesday, October 11, 2011, and
running through November 8, 2011.

I encourage you all to post your comments next Tuesday, October 11th
at this website:
http://www.uspreventiveservicestaskforce.org/tfcomment.htm

We are working with our friends from the other prostate cancer
nonprofit organizations on the Prostate Cancer Roundtable
(http://www.prostatecancerroundtable.net/) to coordinate a response
from the prostate cancer community. You will be seeing statements and
calls to action from all of us in the coming days. Keep watch on the
Us TOO website for more information.

We want you to take action. Be ready to engage your network of
fellow survivor warriors, friends, family, coworkers and
neighbors. Thank you for your participation and support!

Sincerely,

Tom Kirk
President & CEO
Us TOO International Prostate Cancer Education & Support Network
tom@ustoo.org
www.ustoo.org
facebook.com/UsTOOInternational

mrspjd
Posts: 688
Joined: Apr 2010

http://www.pcf.org/site/c.leJRIROrEpH/b.7790173/k.8F47/PCF_Responds_to_US_Preventive_Services_Task_Force_Recommendation_on_PSA_Screening.htm

While needing better guidelines, the PSA test still plays an important role in detecting early prostate cancer in informed patients.

LOS ANGELES/October 10, 2010—The mission of the Prostate Cancer Foundation (PCF) is ending suffering and death from prostate cancer through research. PCF received a copy of the U.S. Preventive Services Take Force report late Friday. Today, PCF issued its analysis of the heavily-debated recommendations of the U.S. Preventive Services Take Force regarding PSA screening in healthy men.

The Prostate Cancer Foundation:
• Supports continued routine PSA screening of informed patients until new American Urological Association clinical guidelines on PSA screening are issued and disseminated.
• Supports a patient’s choice to have a PSA test. The decision should be made between a man and his personal physician based on his individual status with respect to age, symptoms, family history or concerns about prostate cancer.
• Supports American Cancer Society communications calling for far better processes of informed patient decision-making both prior to, and after, PSA screening in healthy men.
• Opposes the elimination of reimbursement for an informed patient requesting screening.
• Strongly recommends intensified National Cancer Institute focus and research investment in better early detection tests of lethal prostate cancers. We also recommend new public-private research partnerships drawn from substantially increased and coordinated research investments from the American Cancer Society (ACS) and the American Urologic Association (AUA) partnering with the NCI and PCF. Such public-private partnerships will accelerate the discovery, testing, and validation in U.S. men of new biotechnologies for lethal cancer detection that are superior to PSA screening.
• Calls for greater patient participation in clinical studies evaluating new genomics-based prostate cancer detection tests.
• Calls for greater eligible patient participation in and physician referral of patients to ongoing new clinical trials evaluating Proactive Surveillance (watchful waiting).

Additional Observations

The USPSTF has heightened awareness with new data of the issue of severe complications and patient suffering from the overdiagnosis and overtreatment of indolent prostate cancers. In addition to the emotional and physical suffering experienced by men and their families, a recent cost-effectiveness analysis of PSA screening estimated that the cost of diagnosis and treatment is over $5,227,306 per patient to prevent one U.S. prostate cancer death.
The USPSTF’s position provides a teachable and actionable moment for the medical community to improve targeting of PSA screening in patients, reduce over-testing and improve processes of patient education on the risks of overtreatment from PSA screening.

In the abstract, "task force" recommendations can create patient confusion and may result in unquantifiable numbers of men who will get a delayed diagnosis of a lethal and curable cancer. However, it should be noted that the recommendation clearly states, “…while the USPSTF discourages the use of screening tests for which the benefits do not outweigh the harms in the target population, it recognizes the common use of PSA screening in practice today and understands that some men will continue to request and some physicians will continue to offer screening. An individual man may choose to be screened because he places a higher value on the possibility of benefit, however small, than the known harms that accompany screening and treatment of screen-detected cancer, particularly the harms of over diagnosis and overtreatment. This decision should be an informed decision, preferably made in consultation with a regular care provider. No man should be screened without his understanding and consent; community-based and employer-based screening that does not allow an informed choice should be discontinued.”

PCF is encouraged that the AUA has convened a panel of medical experts who work routinely with prostate cancer patients, to improve guidelines for more targeted use of the PSA test as a screening tool.

Moving Past the PSA Debate

The PSA test still has a role to play in early detection and treatment for millions of men. It should be noted that in the pre-PSA era, approximately 80% of patients who were diagnosed with prostate cancer, were already in advanced stages of the disease with metastatic cancer. Today, the number of patients who are diagnosed with metastatic disease at time of initial diagnosis is around 20%. In the past 15 years, the death rate has been reduced from 42,000 annually to 33,000.

The PSA debate can become moot with intensive and accelerated research that delivers a better test. For more than a decade, PCF has been supporting research to find new and better molecular biomarkers for prostate cancer. At PCF’s 2011 Scientific Retreat, data on 17 new biotechnologies that complement or have the potential to replace PSA screening was presented. Many of these biotechnologies have the potential to discern between indolent and lethal prostate cancers. Essential will be patient participation in clinical trials to evaluate these new tests. New data on urine and blood tests using genetic biomarkers also offer the promise of eliminating a large number of unneeded biopsies and subsequent unnecessary treatment.

Given the enormity of the problem of overdiagnosis and overtreatment, PCF is also supporting a $5 million research project, the National Proactive Surveillance Network, to determine which patients can be maintained on proactive surveillance and which patients need to be recommended for surgery or radiation. Additional clinical trials of proactive surveillance are urgently needed to develop guidelines for men whose cancer is not life-threatening.

mrspjd
Posts: 688
Joined: Apr 2010

Mike Milken's Washington Post Op-Ed: Why Block a Cancer Test That Saves Lives?

http://www.washingtonpost.com/opinions/why-block-a-cancer-test-that-saves-lives/2011/10/10/gIQAzybedL_story.html

By Michael Milken, Published: October 11

Forty years ago, my mother-in-law learned from a mammogram at age 57 that she had breast cancer. We immediately sought the best available treatment. She lived for many happy years and enjoyed precious time with her grandchildren. Would she have died sooner without the mammogram? I don’t know. But here’s what I do know from four decades of working to accelerate progress against all life-threatening diseases: No screening test is perfect; well-informed patients consulting with their doctors are better equipped than a government agency to make decisions about their health; there are options other than screening everyone or screening no one; and finally, there’s no comfort in ignorance.

The U.S. Preventive Services Task Force (USPSTF), a panel supported by a congressional mandate, now recommends that healthy men not receive prostate-specific antigen (PSA) tests, which measure a protein in the blood produced by prostate tissue. I agree that the current PSA test is inexact and, in many cases, leads to overtreatment that can have terrible side effects such as incontinence and impotence. However, research supported by the Prostate Cancer Foundationhas led to the development of several new molecular markers that could soon complement or even replace the PSA test. These new tests, now in clinical trials pending approval from the Food and Drug Administration, should greatly improve diagnosis and treatment of prostate cancer. In the meantime, the USPSTF recommendation is a disservice to the majority of men. While it would eliminate some short-term health-care costs, long-term costs of treating metastatic disease would be higher. And some men will die. A recent European study showed that testing reduced deaths significantly among men ages 55 to 69. These relatively younger patients are the ones the recent recommendation would most likely exclude from testing because they more often appear to be healthy.

The PSA test doesn’t diagnose prostate cancer. But it can raise a red flag calling for a doctor-patient dialogue on medical options, risks, benefits and costs. We need to make better use of it, not ban it, and, as the American Cancer Society recommends, better inform patients of overtreatment risks.

When we founded the Prostate Cancer Foundation nearly two decades ago, more than 40,000 U.S. men died annually from the disease. That toll was expected to rise sharply as population grew and baby boomers aged. Instead, deaths have dropped closer to 34,000. What happened? For one thing, we’ve supported research that has produced more effective therapies. But also, through media, advocacy events and congressional testimony, we have delivered the message that men should talk to their doctors about a PSA test. And that loved ones should give the same message to the men in their lives.

There’s no precise way to know how many lives were saved by increased awareness that led to testing and how many by improved treatment. But experienced urologists tell me that before PSA tests, the vast majority of patients’ prostate cancer had already metastasized by diagnosis. Today, only about 20 percent of these diagnosed cancers have spread outside the prostate, partly because PSA tests provide early warning. We shouldn’t turn the clock back to the pre-PSA days.

The USPSTF recommendation could produce a cruel form of rationing in which the well-off and well-informed would get PSA tests while many of the poor wouldn’t. That could disproportionately affect African Americans, who have higher prostate cancer risk and death rates.

The argument against testing reflects the same false economy seen throughout America’s health system. Spending on care skyrockets while funding for screening, prevention and research drops. Out of each health-related dollar Americans spend, research by the National Institutes of Health represents little more than a penny; and the medical research programs of private industry, universities and governments together total just over a nickel.

Congress should consider research and funding for prevention an investment, not an expense. The Milken Institute estimates that America’s gross domestic product will be $5.7 trillion lower by mid-century if we don’t contain the containable consequences of chronic diseases. We can save trillions — more than enough to balance the federal budget — by losing weight, exercising, avoiding tobacco, using seat belts and getting regular tests such as PSAs, colonoscopies and mammograms.

The Prostate Cancer Foundation agrees with the American Urological Association that PSA screening provides important information for men and their doctors. In 1993, I was one of those “healthy” men the task force says should not be tested. At least I seemed healthy and felt fine. But I’d recently lost a friend to prostate cancer, so I asked for the test. The result was a reading six times the upper limit of normal. If I’d been kept in the dark by a federal task force, I might not have been here to write this.

Michael Milken is chairman of the Prostate Cancer Foundation and of FasterCures, a Washington-based center of the Milken Institute focused on all serious diseases.

mrspjd
Posts: 688
Joined: Apr 2010

Thought it might be interesting (fair?) to post the following link to a NY Times article in which others, including Dr. Otis Brawley, chief medical and scientific officer of the American Cancer Society (ACS), share their position in support of the USPSTF draft recommendation. The ACS is the host and sponsor of these CSN discussion forums—THIS PCa forum.

http://www.nytimes.com/2011/10/09/magazine/can-cancer-ever-be-ignored.html?pagewanted=1&_r=1&ref=magazine

mrspjd
Posts: 688
Joined: Apr 2010

Drs Scholz, Meyers, and Strum each comment about the USPSTF controversial recommendation against PSA based PCa screening:

"Excessive PSA or Excessive Biopsy?" Dr. Mark Scholz, author; Medical Director, Prostate Oncology Specialists Inc.; Executive Director, Prostate Cancer Research Institute responds to New York Times story on PSA testing: http://www.prostate-cancer.org/pcricms/node/486

“Controversy and prostate cancer treatments” Dr. Charles “Snuffy” Meyers comments in his video blog here: www.askdrmyers.wordpress.com/2011/10/19/prostate-cancer-screening/
Discussion re Meyer’s video can be found on the HealingWell PCa forum @ http://www.healingwell.com/community/default.aspx?f=35&m=2239336

A discussion/blog re “Poor science underlies the USPSTF recommendation about PSA-based screening,” including comments from Dr. Stephen B. Strum, are found here: http://prostatecancerinfolink.net/2011/10/08/poor-science-underlies-the-uspstf-recommendation-about-psa-based-screening/

TEN DAYS REMAINING
Only 10 more days until the USPSTF’s public comment session closes. The Task Force is accepting public comment through Tuesday, Nov 8, on their website @
http://www.uspreventiveservicestaskforce.org/tfcomment.htm
As part of the PCa community, your comments (facts, opinions, experiences, etc) and participation are encouraged/needed. If you haven’t already done so, please consider submitting your comments directly to the Task Force TODAY. Thanks.

Beau2
Posts: 228
Joined: Sep 2010

Hey mrspjd,

Thank you for keeping this thread going. I sure hope guys can find time to comment to the USPTF.

VascodaGama's picture
VascodaGama
Posts: 1517
Joined: Nov 2010

I have done so. They request some details aiming in changing the draft document, but will they do change it in reality?
I would like to see my comments writen in the final document.

Regards.
VG

mrspjd
Posts: 688
Joined: Apr 2010

http://www.pr.com/press-release/361481

Prostate Cancer Coalitions Emphatically Reject the Proposed “D” Prostate Cancer Recommendation of the U. S. Preventive Services Task Force (USPSTF)

La Jolla, CA, October 15, 2011 --(PR.com)-- From The National Alliance of State Prostate Cancer Coalitions and The California Prostate Cancer Coalition

The National Alliance of State Prostate Cancer Coalitions and the California Prostate Cancer Coalition emphatically reject the proposed “D” Prostate Cancer Recommendation of the U. S. Preventive Services Task Force (USPSTF).

The proposed Guideline of the U. S. Preventive Services Task Force would recommend the PSA blood test for prostate cancer only if the patient has prostate symptoms. However, by the time a patient has symptoms the disease is usually late-stage (advanced) and cannot be cured. The USPSTF's proposed "D" Recommendation Against the Use of PSA "in healthy (asymptomatic) men" is a mis-interpretation of existing clinical trial data that would discourage men from asking for the PSA and excuse their physicians from failing to offer and discuss it with them. The National Alliance of State Prostate Cancer Coalitions (NASPCC) and the California Prostate Cancer Coalition (CPCC) heartily endorse the use of PSA for men beginning at age 40 (35 if high-risk). It's the best test we currently have for prostate cancer and, in conjunction with a digital rectal examination it should be offered until more sensitive/specific biomarkers are approved by the FDA. NASPCC and CPCC do not support unnecessary treatment; however, the USPSTF Recommendation would prevent men with potentially deadly disease from learning their true diagnosis in time for curative care and would condemn them to a miserable death.

According to Merel Nissenberg, president of CPCC and NASPCC, “Knowledge is power. Testing for and diagnosing prostate cancer does not have to lead to over-treatment; men with clinically insignificant prostate cancer can select Active Surveillance, and those with aggressive cancer can be treated. When balancing the possible side effects of treatment against the saving of a life, most men would choose to live.”

###

The California Prostate Cancer Coalition (CPCC) is a coalition of doctors, prostate cancer survivors (and families), nurses, support groups and others concerned about prostate cancer in California.

The National Alliance of State Prostate Cancer Coalitions (NASPCC) is an umbrella organization meant to encompass participation by all states - through their state prostate cancer coalitions, state prostate cancer task forces or state prostate cancer foundations.

mrspjd
Posts: 688
Joined: Apr 2010

TALKING POINTS, SAMPLE LETTER AND WHERE TO EMAIL

In addition to submitting comments to the USPSTF thru Nov 8, the CCPC suggests emailing letters to Kathleen Sebelius, U.S. Secretary of Health and Human Services @: Kathleen.Sebelius@HHS.gov and to your Congressional Representatives, find them here: www.congress.org. Express concerns (suggested talking points below) about the USPSTF recommendation against PSA screening for prostate cancer in asymptomatic men.

In 2009, the USPSTF recommended that women younger than 50 could do away with routine mammograms. On 11/18/09, Secretary Sebelius issued a press release, in which she stated, “My message to women is simple. Mammograms have been an important life-saving tool in the fight against breast cancer and they still are today”. Due to the impact from Secretary Sebelius press release, younger women are receiving their mammograms today AGAINST the recommendation of the USPSTF. It is hoped that Secretary Sebelius will also support PSA based screening for prostate cancer in asymptomatic men.

Sample letter:

RE: OPPOSITION TO THE USPSTF RECOMMENDATION AGAINST PSA BASED SCREENING FOR PROSTATE CANCER

The Honorable [Secretary Sebelius or Congressman/woman _____ ]:

The United States Preventive Services Task Force has proposed a "D" rating on the use of the prostate specific antigen blood test for detection of prostate cancer in men.

As [a prostate cancer survivor; the wife/loved one of a PCa survivor, etc], I wish to protest this recommendation as it would foster an archaic approach to prostate cancer treatment. In
addition, those men who fail to get tested would have an increased risk of dying from prostate cancer, especially African Americans, and men with a family history of prostate cancer as they are already at a higher risk.

The Task Force's recommendation does not offer a viable alternative for diagnosing and treating prostate cancer if no screening tests are used, rather it suggests that it be treated when symptoms appear. Prostate cancer has no symptoms until it is beyond treatment with surgery or radiation, thus it is likely to be metastatic when discovered. At this point the patient's
risk of dying is greatly increased and he will not be curable. Further, if this recommendation is adopted I am concerned that fewer men will opt for testing under the false belief that early detection is unnecessary.

Your opposition to the USPSTF recommendation against PSA based screening/early detection for Prostate Cancer in asymptomatic men is respectfully requested. Thank you for your support on this critical issue.

Sincerely,
Name
Address
City, State, Zip

********************

The National Alliance of State Prostate Cancer Coalitions suggests these USPSTF Speaking Points:

>The National Alliance of State Prostate Cancer Coalitions (NASPCC) and the California Prostate Cancer Coalition (CPCC) endorse the use of PSA for men beginning at age 40 (35 if high-risk).

>PSA is the best test we currently have to indicate risk for prostate cancer. Both PSA and a digital rectal examination should be offered until more sensitive/specific biomarkers are approved.

>The proposed “D” Recommendation of the U.S. Preventive Services Task Force advises against the use of PSA testing in men who have no prostate symptoms. However, in its early stages prostate cancer usually has no symptoms.

>If a man with potentially deadly prostate cancer waits until he has symptoms to be tested his cancer will not be curable.

>The proposed “D” Recommendation would prevent men with potentially deadly disease from learning their true diagnosis in time for cure, and might condemn them to death.

>Knowledge is power. Men have a right to know their bodies and make informed choices.

>Testing for and diagnosing prostate cancer does not have to lead to over-treatment; men with clinically insignificant prostate cancer can select Active Surveillance, and those with aggressive cancer can be treated. When balancing the possible side effects of treatment against the saving of a life, most men would choose to live.

>PSA testing is a man’s best defense against dying of potentially deadly prostate cancer.

>Individuals have a fundamental right to choose whether or not they want to know if they have prostate cancer prior to becoming symptomatic.

>According to the U.S. SEER Database (1992-2007): There has been a 75% decrease in metastatic disease at time of diagnosis; And a 40% decrease in age-adjusted prostate cancer mortality rate
SEER = Surveillance Epidemiology and End Results as published in CA: Causes and Control,
19:175,2007 by Etzioni et al

>Two mathematical modeling teams of the National Cancer Institute's Cancer Modeling Network independently projected disease mortality in the absence and presence of PSA screening (Etzioni, et al. Ca Causes and Control 19:175, 2007)
STATISTICAL GROUPS: Univ of Michigan and Fred Hutchinson Cancer Research Center; MORTALITY BENEFIT DUE TO PSA SCREENING: 70% and 45% respectively.

>As a diagnostic tool, PSA testing must not be confused with treatment and its side effects.

>USPSTF Members failed to review the updated publications on the PLCO trial that concluded “Selective use of PSA screening for men in good health appears to reduce the risk of PCSM with minimal overtreatment.” [PCSM: Prostate Cancer-Specific Mortality] Crawford et al, J Clin Oncol. 2011 Feb 1;29(4):355-61. Epub 2010 Nov 1.

>The ERSPC and Goteborg trials in Europe showed that screening saves lives. Trends documented in the World Health Organization database also show that lives are saved in countries where PSA screening is practiced. [Bouchardy C, et al: Int J Cancer, 123:421-9, 2008; Kvale R et al: JNCI, 99:181-7, 2007; Van Leeuwen PJ et al: Eur J Cancer, 46:377-83, 2010; Bartsch G et al: BJU Int, 101:810-6, 2009]

>We should be educating men and their physicians on the appropriateness of biopsy and treatment for each patient. This discussion should take place AFTER the PSA, not before.

>The USPSTF “D” Recommendation will do more harm to the men at higher risk for prostate cancer, including African-American men. If insurance coverage is denied, it will also cause a disproportionate burden on lower income men.

>The USPSTF relied upon the PLCO Trial in the U.S. which was flawed. A majority of the men in the control group were screened, causing contamination of the results. There was also insufficient follow up. The results from the two better-designed trials (ERSPC and Goteborg) that had sufficient follow-up demonstrate a clear reduction in prostate cancer mortality.

*******************
Disclaimer: I am not a CPCC or NASPCC member. I have not verified the accuracy of the NASPCC "speaking points" and posting/sharing the info does not necessarily represent my endorsement of certain "points." ~~mrspjd

mrspjd
Posts: 688
Joined: Apr 2010

The USPSTF public comment session has closed. However, a window of opportunity still exists for a limited time to email comments and letters to Kathleen Sebilius, Secretary, U.S. HHS, and to your U.S. Congressional representatives, voicing opposition to the Task Force recommendation against PSA based screening for PCa in asymptomatic men and the D rating assigned by the Task Force to the PSA test as a PCa screening modality.

Thank you to everyone in the CSN PCa Community who took the time to submit comments to the Task Force. And another thank you to those who continue to go above & beyond the Call to Action and also write/email letters to Secretary Sebilius, and to your government representatives.

Thank you, too, for your patience and tolerance over the last few weeks as I relentlessly and shamelessly posted and re-posted about this controversial PCa issue to keep it current! IMHO, the conversation is not over.

Sincere best wishes to all, men and women, who, together, are facing and successfully overcoming the challenges of PCa only to realize that cancer can instill new found strength, determination, appreciation and empowerment in your life.

Be well,

mrs pjd

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