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    Eliz52

    Thank you for this article, I wish it was on the front page of every newspaper in Australia. I’m one of the lucky ones who sensed a big fat rat almost 30 years ago when I was TOLD, along with most other women, that all women “must” have pap tests. Informed consent has never been respected in women’s cancer screening. I took myself off to the Medical Library and spoke to a couple of academics and have always declined screening, an informed decision, but the system has always made clear I apparently don’t have that right, I’m labelled “non-compliant, uneducated, silly, irresponsible, reckless” etc

    The facts have always been hidden from women in favour of a screening story and that’s what it is, a story. Women who declined pap testing up until about 15 years ago where denied access to the Pill…this test is elective, legally and ethically, and has nothing to do with the Pill, but the medical profession was allowed to coerce women into pap testing to get the Pill. (along with unnecessary and potentially harmful routine pelvic and breast exams) Disgraceful…
    It has been hard to watch the pain, worry/distress and damage caused by this program over the decades, including my younger sister who endured a excess cone biopsy after a false positive pap test.

    Australian women are some of the most over-screened and over-treated in the world, yet no one says a word, our doctors are quiet and collecting target payments for pap testing. These payments are unethical IMO, as they create a possible conflict of interest. (women should be told about these payments at the very least)

    Finland has had a 6-7 pap test program since the 1960s, 5 yearly from 30 to 60 and have both the lowest rates of this rare cancer in the world and they send far fewer women for colposcopy/biopsies. The lifetime risk of referral here for colposcopy/biopsy is a whopping 77% for a cancer with a 0.65% lifetime risk. (it’s rare, always was and was in natural decline before testing started)
    There was never a need to harm and worry so many and now there is no excuse at all. I have always felt our “program” is protected, it suits many….not women.

    The Netherlands also has evidence based testing, but will move with the evidence yet again and shortly introduce a new program, 5 hrHPV primary triage tests offered at ages 30,35,40,50 and 60 and only the roughly 5% who are HPV positive and at risk will be offered a 5 yearly pap test. Most women are HPV negative and they cannot benefit from pap testing, they will be offered the HPV primary testing program and there is a long overdue self-test option already in use, the Delphi Screener. (and being used in Singapore, Italy and elsewhere) This is more likely to save lives by identifying the small number at risk and by sparing HUGE numbers of women from a lifetime of unnecessary pap testing and the risk of potentially harmful over-treatment/excess biopsies. (cervical damage can lead to premature babies, miscarriages, c-sections, infertility etc)

    Those HPV negative and no longer sexually active or confidently monogamous may choose to stop all further testing.
    This is smarter testing…we basically spend millions to worry and harm women who are not even at risk from this rare cancer and we miss too many of these cancers with our inefficient excess…and we waste scarce health resources. Our program also shows a deep disrespect for the bodily privacy of women.

    This should be a scandal, but still we delay…a panel has finally been formed to review our program, no report is due until 2014 and then women must wait for change…it seems like a stalling exercise to me, the evidence has been clear for many years, at the very least the program should immediately be wound back (5 yearly) and young women (under 25) should be excluded, this would contain some of the damage while we consider introducing HPV primary testing.

    IMO, control of this program should be handed to an independent group (like the Nordic Cochrane Institute) for review so it can finally be focused on what’s best for women. The Netherlands has been able to keep their program current by asking experts for their “personal” opinion, not as a representative of a professional group, to keep self-interest out of the program. (as far as possible)

    Even at this late stage we are still telling women they should have 2 yearly testing from teens to age 70, an absurd 26+ pap tests…this is bad medical advice. It’s high risk for no additional benefit over a 6-7 pap test program and no benefit at all for those under 30. Sadly, no country in the world has shown a benefit doing pap or HPV testing on those under 30. It is high risk for no benefit…the same very rare cases occur whether we screen or not, but screening condemns huge numbers to worry, fear and the risks posed by false positives and over-treatment. Young women produce the most false positives…the official Govt statement on HPV primary testing is IMO, also incomplete and misleading…IMO, carefully worded to keep women in the dark about the real significance of HPV primary testing – if you’re HPV negative then you’re not currently at risk, HPV positive and aged 30+ then you have a small chance of benefiting from a 5 yearly pap test. We only offer women HPV testing after “treatments”….why? Testing women for HPV first would rule most out of pap testing and over-treatment. (about 95% of those aged 30+)

    Our breast screening program also ignores informed consent and IMO, operates outside proper ethical standards. It was only recently that a doctor bravely stepped forward to warn women about over-diagnosis, Breast Screen chose not to tell women. The benefits IMO, have always been inflated and the screening authority cherry-picks research and only presents those studies that promote the program, this is grossly unfair to women.

    It’s time women were treated with some respect and these programs were pulled into line, we are not targets to be counted to achieve govt-set targets, political goals or to be used by vested interests to generate huge profits, this is playing with our health and lives…a double standard definitely applies, screening is “done” to women and offered to men and informed consent is respected in prostate screening. We’ve recently had discussions about sexism in politics, I believe a discussion should also focus on our medical profession and these programs.

    I have also made an informed decision not to have breast screening. A huge thank you to the NCI for their excellent summary of all of the evidence, “The risks and benefits of mammograms” is at their website, my advice to women: do not rely on any information provided by our screening authorities and double check all recommendations provided by our doctors. We have many doctors who are also concerned about these programs, find one who’ll work with you and act in your best interests.

    Thanks for a great article, I love to see real information about women’s cancer screening, it’s rare in this country.
    HPV Today, Edition 24, sets out the new Dutch program.

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