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Archive for the ‘SELECT COMMITTEE INQUIRY’ Category

PROSTABLOG NZ: The final report from a two-year NZ Parliamentary investigation into prostate cancer detection and treatment has been released by the Health Select Committee. READ MORE>

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PROSTABLOG NZ:  HERE are four key issues the NZ Parliamentary inquiry into the detection and treatment of prostate cancer ought now to be focusing on:

  • Mass screening…or not: Not. The evidence in favour of mass screening of all middle-aged men for prostate cancer is not sufficiently strong in statistical terms to overcome the counter-arguments concerning needless and over-treatment and high likelihood of after effects that will blight quality of life.

But…it’s not strong enough yet. That may change as more studies are done and closer analysis of the large random trials is completed. PSA testing may also improve, or be replaced with something better, a test that defines the actual risk to the patient.

  • Guidelines to GPs must be revised. Currently, GPs are forbidden by the Ministry of Health to routinely offer PSA tests and/or rectal examinations for prostate cancer unless a man asks, or mentions symptoms. Since this can be a symptomless disease (until it’s too late), that is unacceptable. It also presumes that people don’t move around, change doctors, lose track of medical records, or simply have little idea of the implications of dad dying of prostate cancer.

If the Ministry of Health wants to avoid high-risk treatment being offered unnecessarily, it needs to move the initial gatekeeping further up the food chain to the specialists.

  • Specialists’ advice needs to be delivered via a more balanced and less costly method. At present, the system works well enough up to the point the pathologist finds signs of cancer in biopsy samples.

But after that, men are left to fend for themselves when it comes to seeking advice from a range of authorities. Some don’t bother, and just go with what the urologist offers. Some can’t afford the $1600 charged by a cancer specialist (oncologist), who may be the most neutral source of advice available.

In the US, the first specialists in the hierarchy, urologists, earned themselves the unenviable moniker of “prostate snatchers” because of the lucrative, medical insurance-backed business of prostate surgery.

How about panels of doctors representing the main treatment options in NZ (surgery, robotic surgery, external beam radiation, brachytherapy, watchful waiting) reviewing the case notes and offering clearly explained options to patients?

  • The public needs to be kept up to date – in layman’s terms – with diagnostic and treatment developments. This is not happening at present. The Ministry and its satellite committees do not have readily available, up-to-date information on the web to help men with newly diagnosed prostate cancer become fully informed before making one of the biggest decisions of their lives.

As wealthy male baby boomers hit the danger zone, enormous amounts of US, European and Asian money are going into researching and developing new drugs, methods of surgery and radiation, diagnostic tools and a bewildering range of related methdologies.

That’s the point – it’s bewildering to the average Kiwi, who must hope his medics are keeping up to date and that the government is adequately funding new treatments.

For example, there is Provenge, a new $100,000+ drug regime that will extend life for a few months, and which is now selling big in the US. When will we see it here?

Communicating the relevance of the overseas prostate industry boom to Kiwis cannot be left solely to the news media here: that’s worse than leaving it to chance and the public relations industry.

Few, if any, journalists in NZ take an abiding interest in prostate cancer (why would they – it’s one of many diseases), and what they do write is sometimes ill-informed, incomplete, inaccurate and out of date.

Finally, the Health Select Committee would be wise to keep its files open on this inquiry. It would be a mistake to shut the doors on a tsunami of prostate cancer information that emerges daily on the web.

Developments are moving so quickly, the committee should require the Ministry of Health to report regularly about what’s happening. The inquiry report, when it finally emerges, should be an interim one that can be updated over time.

The committee is wrestling with questions that are far from settled.

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PROSTABLOG NZ: It’s almost a year since the first hearings were held by the NZ Parliament’s Health Select Committee inquiry into the early detection and treatment of prostate cancer.

The obvious question now is when will it report back.

Since it published its terms of reference in August last year, the committee has received 33 submissions, four of them from the influential health lobby group, the NZ Guidelines Group, whose last submission was made in December.

This document made it clear that the group – an independent incorporated society originally set up by the government in 1996 – is opposed to population-based PSA screening.

To save one life, up to 41 men could incur significant harm.

It bases this view on its assessment of numerous NZ and international studies, including two large randomised trials (one European, the other American) that were reported last year.

Here are some of the last pages of the group’s December, 2009, submission (RCT = random controlled trial):

This also appears to be the main thrust of submissions on PSA testing from other health authorities (although the Guidelines Group is at pains to stress it is independent from the Ministry of Health).

Another “official” organisation, the National Health Committee, said in its submission (August 26, 2009) that it has seen nothing to change its 2005 advice to the MOH that population-based PSA screening is not an acceptable option.

However, it did favour targeted screening of high-risk groups, such as men with a family history of prostate cancer.

The NHC is aware that since providing its advice in 2005, clinical practice has found
that targeted screening for men at high risk of prostate cancer appears to be useful
and potentially cost effective. These are men who have a family history of prostate
or related cancers.

The Royal NZ College of General Practitioners – presumably speaking on behalf of doctors on the frontline – said in its submission it would go along with the NZ Guidelines Group’s views.

It did make a couple of pleas, however, calling for up-to-date information to hand out to patients, and for treatment to be available to all:

It is important that inequities in access relating to follow up after positive
screening results, and for symptomatic men, are identified and eliminated.

The Cancer Society agreed with the Guidelines Group, and backed this up by quoting from selected organisations in other Western countries.

Most agencies around the world have some form of recommendation that decisions for screening for prostate cancer should be made on an individual basis and in consultation with a medical professional:

The Australian Cancer Council states that:
“In the absence of direct evidence showing a clear benefit of population based screening for prostate cancer, a patient centred approach for individual decisions about testing is recommended. Screening discussions and decisions should always include and take into account, age and other individual risk
factors such as a family history of the disease” (Cancer Council Au 2005).

The American Cancer Society states that:
“The American Cancer Society (ACS) does not recommend routine testing for prostate cancer at this time. ACS believes that doctors should discuss the pros and cons of testing with men so each man can decide if testing is right for him. If a man chooses to be tested, the tests should include a PSA blood test and
DRE (digital rectal exam) yearly, beginning at age 50, for men at average risk who can be expected to live at least 10 more years.” (American Cancer Society 2009).

The UK Cancer Research Council states:
“in the UK, there is no national screening programme for prostate cancer because trials have not yet shown clear evidence that screening will reduce deaths from this disease. Also, many men diagnosed with
prostate cancer have very slowly growing cancers that will never cause any symptoms or problems in their lifetime. So at the moment there is no clear benefit in diagnosing prostate cancer early and it may actually cause harm for some men.”(Cancer Research UK 2009).

Urological Society of Australia and New Zealand states:
“Individual men aged 50 to 70 years with at least a 10 year life expectancy should be able to be screened by annual DRE and PSA testing, after appropriate counselling regarding the potential risks and benefits of investigations and the controversies of treatment.”(Urological Society ANZ 1999).

The majority of submissions – from prominent medical practitioners, prostate cancer lobby groups and patients – urged the committee to recommend PSA testing, if not on a population (all men) screening basis, then at least as a service offered routinely by GPs, without men having to ask (the current MOH policy).

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PROSTABLOG: When can we expect a report from the NZ parliamentary inquiry into the early detection and treatment of prostate cancer, which was launched a little over a year ago?

No word on that from the committee, but perhaps two of the most powerful “words” in the debate on screening were submitted to the committee just before last Christmas (unreported in the news media, so far as I can tell).

They came from eminent pro-screening urologist Robin Smart and from the Ministry of Health’s expert panel, the NZ Guidelines Group, which has been strongly anti-screening (population-based).

Here’s a couple of quotes from Smart’s submission, which discussed the inconclusive results of the two large international screening trials published in March last year:

The conclusion is that it is now very difficult if not impossible to conduct trials of controls having no testing versus screened having PSA/DRE (PSA tests/digital rectal examinations) testing with endpoints of death or metastases in advanced countries especially the United States.

This is largely due to the international improvements in these aspects because of PSA/DRE testing and consequent reluctance of men to remain in control groups.

This in turn means that it is going to continue to be difficult for authorities and governments responsible for making decisions concerning setting up national prostate cancer screening programmes who are waiting for more information before doing so.

These decisions will have to be made largely on current information from existing trials, studies and experience…

The weight of evidence in favour of PSA/DRE testing is now irrefutable after almost two decades of international experience.

To go back to the time before PSA testing would now be unthinkable.

Of course we hope for the perfect tests, perfect treatment and continue to look for improvements. But men today need the benefit of current technology which the evidence shows is saving between a third to a half of those who would otherwise die of prostate cancer where it is applied.

In its final submission (dated the same day as Smart’s, December 16), the guidelines group gave a contrary view.

It looked at nearly 10,000 research abstracts and chose 166 it says were relevant to the brief given to it by the Ministry of Health.

Its analysis concluded that the potential harm from population-based screening outweighs benefits.

The best case scenario it could find estimated that a screening programme conducted on all men aged 50 to 74 for nine years would save about 40 lives a year (from the 600 who die from the disease in NZ each year).

Those 360 lives saved over nearly a decade had to be weighed against the following “harm” that could be done:

  • An estimated 41 men would suffer significant treatment complications for every one life saved.
  • Of the additional 1953 men per year requiring prostate cancer treatment (presumably on top of the 2500 now), 43% to 88% would have sexual dysfunction, 10% to 35% urinary dysfunction and 8% to 43% bowel dysfunction (the range depending on whose research is consulted)
  • Each year, there would be the following additional complications – 838 to 1677 cases of sexual dysfunction; 156 to 838 cases of bowel dysfunction; and 195 to 682 cases of urinary dysfunction.

Meantime, international debate on screening continues.

HERE> is a report on a pro v con panel discussion at the recent American Urological Association annual conference.

And, Mike Scott, sitemaster of the New Prostate Cancer Info-Link in the US, says he agrees with an April article in the Australian Medical Journal that said population-based screening (that is, screening of all men) cannot be sanctioned until something more accurate than the PSA test is developed. READ MORE>

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PROSTABLOG NZ: The ideological debate about prostate cancer screening hasn’t moved along much in New Zealand over the past few years.

I’m judging this from an anecdote a guest speaker at my journalism course told students this week.

An experienced journalist, she said a few years ago she was writing a piece for NZ Listener magazine about PSA screening, and the Ministry of Health would speak to her only on the condition they got to see the resulting article prior to publication.

That usually causes journalists to feel apprehensive, and in this case her fears were realised.

The Ministry people hit the roof over what she wrote (basically, that all men over 50 should be urged to get PSA tests), and made this plain to her editor.

Judging by what I heard from the Ministry team at the Health Select Committee hearing into prostate cancer screening late last year, the official view is still the same: PSA bad.

Speaking of which – I wonder when we’re going to hear anything further from the committee?

Chairman Paul Hutchison made the MOH people promise to deliver their final views last November.

Did they?

Are there more hearings?

When will we see the results?

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PROSTABLOG NZ: The NZ Listener magazine has commissioned an article on cancer and the theme will be screening.

I was interviewed for it today and I think the writer has a good grasp of the issues.

Look forward to seeing what she comes up with.

Does anyone know what happened to the NZ Parliamentary inquiry into prostate cancer?

It was supposed to get more evidence from the Ministry of Health in November, when the ministry expected to have completed its analysis of the two big randomised studies into PSA screening.

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PROSTABLOG NZ: This is a very special post – the one thousandth for Prostablog since we launched on April 1, 2009.

It’s special because I’ve reserved it for a brave and resilient couple, Kim and Brian, whose saga with prostate cancer brought tears to the eyes of every person in the Select Committee room at the NZ Parliamentary inquiry into prostate cancer this week.

I’ve never met Kim Cook. We’ve spoken on the phone just a couple of times.

But I know a lot about her from the way she has written for Prostablog over the past winter months.

Her story (entitled John and Mary’s story) is about the struggle she and partner Brian have faced getting treatment for his cancer, which is now advanced.

Kim said she wanted something to come out of their battle: how could she get her message across about the frustrations some prostate patients face with the medical system in NZ?

What better way than to tell the story to the Health Select Committee on the first day of its hearings.

They had already had about 10,000 words from her in a written submission.

What came on Wednesday, via phone teleconference (because Brian was not up to the trip from Auckland to Wellington), was a gritty, emotional but devastatingly precise introduction to their story.

Kim’s voice broke only once, near the end, when she talked of crying herself to sleep most nights.

MPs, reporters, audience, dabbed their eyes at this point.

It was important for the MPs on the committee to hear from this brave woman.

It was a reality check for them, a respite from the mostly dispassionate testimony of medics and bureaucrats.

Kim, Prostablog salutes you.

CLICK HERE to see what Kim said.

FOOTNOTE: prostablog has come a long way from the first days of April, when views were lucky to hit double figures.

Yesterday we had nearly 400 page uploads, the most for a single day. So far.

As I write this, I see that 21,278 people have taken a look since we launched. Probably, it’s a lot more than that, since direct RSS feeds are not recorded.

The most recent indication we have “arrived” was a request from a New York robotic prostatecomy clinic to please put a link to their website on our home page. Happy to oblige.

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PROSTABLOG NZ: The battle lines were drawn at yesterday’s first hearing of the  NZ Parliamentary inquiry into prostate cancer – “vested interests” versus those who guard the country’s public medical system.

The former group, apparently, comprises prostate cancer patients and some medical professionals who operate in the field of prostate cancer; the latter, the NZ Guidelines Group, a committee from the medical fraternity and bureaucracy on whom the Ministry of Health relies for expert advice on health policy.

According to the Guidelines Group, the vested interests (a term they used at today’s hearing before the Health Select Committee) must be excluded from the process of deciding how or whether prostate cancer testing should be funded and implemented.

InquiryDay1 1

PROSTATE INQUIRY: Barry Young gives his submission.

This proposition alarmed some members of the select committee, who asked if the reference to “vested interests” referred to drug companies or other commercial interests who might benefit from prostate screening and testing.

The Guidelines Group – represented by chair Professor Cindy Farquhar, chief executive Steve Caldwell and a Nelson GP, Dr Jim Vause – seemed reluctant to spell out exactly what they meant, but when pressed conceded it was, in part, people who suffer from the disease being discussed.

It was a crucial moment at yesterday’s hearing, a three-hour session during which the committee of MPs heard evidence from mostly those in the “vested interests” corner – prostate survivors and their medical advocates.

It threw into sharp relief the attitude of those whose opposition to screening and testing have influenced the government’s position on prostate cancer for more than a decade, a decade during which medical science has moved rapidly to outflank some of their views.

The battleground was forcefully defined from the start of the hearings, when Prostate Cancer Foundation president Barry Young (see video) gave a passionate outline of what he termed the unnecessary loss of men’s lives because of confused communications between the Ministry of Health, GPs and patients.

He and Professor Brett Delahunt – an eminent Wellington pathologist who specialises in urology – claimed earlier attempts (in 2004) by the NZ Guidelines Group to produce policy on prostate cancer testing were a fiasco, which dishonestly misrepresented the outcome as the consensual work of the specialists involved (who included Delahunt).

The MPs were taken aback by these claims and will provide the Guidelines Group with a recording of what Young and Delahunt said so the group can respond (interestingly, the Guidelines people were last up today, so they didn’t attend the earlier submissions to hear what was said).

InquiryDay1 2

Health Select Committee chair Paul Hutchison (right) guides the hearing.

All the submissions yesterday were effective.

Three prostate survivors – one a former medic with the NZ army in Vietnam – gave different perspectives on their experiences, and were questioned closely by the MPs on what they think the committee can do to meet the challenges.

The most affecting presentation came from Kim Cook (Mary on this blogsite), whose story about partner Brian’s saga with advanced prostate cancer deeply affected those listening to her by teleconference.

RoyVeteran MP Eric Roy (right) could be seen wiping tears from his eyes, and most in the room were not far removed from such a show of emotion.

Kim’s efforts to empower herself in the face of a seemingly implacable medical profession were accorded great respect by the committee.

As second man up, Barry Young told the committee that “some members of the medical profession have not distinguished themselves at all” in the way they have dealt with prostate cancer.

“The attitude of some members has indeed led to the death of men in this country,” he said. These were men who had been refused the option of PSA tests or rectal exams or both.

When men came to the foundation in desperation in such circumstances, the foundation’s advice was for them to find another GP.

“We need an education programme not only for the public but for the medical profession as well.”

He was critical of the process used by the Ministry of Health to formulate its policies on prostate cancer screening.

He described an earlier instance when he and prominent prostate specialists were invited on to a Ministry-funded committee to investigate research and best practice.

When it was completed, the committee was disbanded and to his alarm the Ministry’s advisors declined to have the resulting policy peer-reviewed.

“None of us recognised a single paragraph of the policy report that was produced. I can understand why GPs are confused.”

Later, he was asked by Eric Roy why some GPs were not offering screening.

“I think it’s because they are confused. Even the information given to urologists is less than clear. We need to remove the ambiguity – from the medical profession, from the Ministry of Health.”

BrettDelahuntBrett Delahunt (left) was even more condemnatory of the Ministry’s policy advice process, describing the last instance by the NZ Guidelines Group in 2004 as a “fiasco”.

He was invited onto that review committee late in the procedure and went to its last two meetings.

He felt his views and those of other specialists involved were largely ignored.

“The recommendations of the Guidelines Group [for GPs not to recommend PSA testing to asymptomatic male patients] were not a consensus. They were inflicted on the committee after the meetings.”

The problem with such a policy was that in most cases, by the time men showed symptoms, the cancer had spread and metastasised, which meant it was too late to treat them: “If you wait for symptoms to occur you’ve left it too long.”

The PSA (prostate-specific antigen) was the most sensitive of all cancer markers. The false negative rate was “quite low” if the procedures were properly handled.

What the clinician should look for is change in the level of PSA. If the level began to double in less than a year, the approach should be aggressive.

He believes it is now possible to tell the difference between indolent and aggressive tumours.

He described the confusion initially caused when researchers used data including the early use of the Gleason score (for cancer aggression) which once included grades 1 and 2.

It has since been found that samples showing such low scores were not cancers at all (so the Gleason scale no longer includes them), but treatment and mortality data used to compare trends had been muddied as a result.

He said other governments (Canada, US and some in Europe) show a much more positive approach than New Zealand’s to screening and to making men aware of the dangers of slow-growing prostate cancer.

Evidence of the success of opportunistic screening (as opposed to population-based) was now overwhelming.

Hutchison2Chair Paul Hutchison (right) asked for elaboration about Delahunt’s Guidelines Group comments, saying he was under the impression the group was independent and very anxious to take an evidence-based approach.

Delahunt: “That’s fair – but the evidence base was out of date.” He also said he became a member only through accident, after a colleague in Australia mentioned to him the process was under way and asked why he was not part of it.

He said when the group’s guidelines were published his name was listed on the document, something he objected to, since he disagreed with its negative tenor: “There was an element of dishonesty in the Guidelines Group thanking us for the work done.”

DysonChallenged by MP Ruth Dyson (left) on what she perceived to be an allegation the medical profession was deliberately not doing its best, Delahunt said he did not believe anyone went out of their way to deter men from being diagnosed.

His assertion was that some men with the potential to have the diagnosis and cure were missing out.

Asked by Green MP Kevin Hague who should make the decision about a screening programme, Delahunt said he was not proposing a national population-based programme. The need was to encourage opportunistic screening.

“This committee should tell the medical profession there is a need for more clearcut guidelines.”

Hutchison asked who would be in a position to achieve that.

Delahunt: “A balanced group could be appointed.”

Later, he added that some men were not getting a fair deal. Roughly the same number of men died from prostate cancer as women from breast cancer.

The Guidelines Group trio was last to speak (rather mysteriously “welcomed back” by the committee), with GP Jim Vause leading the committee through a series of PowerPoint slides.

These included simplified graphics illustrating what he perceived to be the main thrust of results from the two randomised studies: ie. that many men (more than 1400) need to be screened for prostate cancer before a single life is saved.

He did not mention that many more women (thousands) need to be screened for breast and cervical cancer before their single lives are saved.

Hutchison pointed out that there were known problems with the two trials. Vause said he would get to that later, but didn’t.

He showed that the NZ prostate cancer death rate has been stable since 1961, but that since the early to mid-1990s, the number of diagnoses has risen steeply.

He put that down largely to the prostate awareness programme (but Bret Delahunt would give a big share of the credit to the introduction of the PSA test in 1993).

He was at pains to warn of the risks of treatment – especially death.

A key slide shown to the committee said: “[There is a] need for presenting information free of bias from vested interests in an (sic) manner that a man can understand.”

He said he believed the key point in all this is informed consent.

Cindy.Guidelines Group chair and surgeon Cindy Farquhar (right) said it was vital to have reliable evidence when introducing a new strategy.

This involved trade-offs between:

  • benefits of intervention (in this case a screening programme to detect early prostate cancer);
  • risk of the intervention (harms from the additional biopsies, downstream treatments);
  • cost of intervention;
  • patient preferences.

She mentioned the downside of “just doing it”, listing three examples from the past when such an approach proved  disastrous.

Her last slide elaborated the Guideline Group’s processes:

  • systematic approach;
  • researchers with expertise in clinical studies, critical appraisal, combining studies, developing recommendations, grading evidence;
  • developing guidelines – how to apply the international evidence to the NZ health sector.

The main message from her group was that its review of the two overseas studies (reported in the New England Journal of Medicine last March) was still going on and would not report until November.

Hutchison asked for an assurance that would be done on time, got it, and said the committee would look forward to hearing from the group once that had happened.

The MPs were impressive during yesterday’s hearing.

It was obvious they had done their reading. Their questions showed they have a sound grasp of the issues they must somehow try to resolve.

In the end, it came down to a couple of straight-forward questions:

  • How can the confusion that seems to abound between patients and doctors over prostate cancer be resolved?
  • What can be done to break through Kiwi males’ “I can tough it out” attitude to getting themselves checked out?

The committee made it clear that sorting out the vast morass of conflicting data about prostate cancer detection and treatment is not its job – it will probably recommend this be done by a truly independent group representing all stakeholders, “vested interests” and all.

The only thing everyone seems agreed on at this stage is that population-based mass screening of all men for prostate cancer is not a starter.

But neither is the status quo acceptable. Leaving men without symptoms out of the equation (the medical bureaucracy’s current stance) won’t do.

FOOTNOTE: Committee chair Dr Paul Hutchison said after the hearings that he would write to Barry Young and ask him to provide details to the Health and Disability Commissioner of any cases the foundation knows about of men being refused PSA tests by their GPs.

NEWS COVERAGE of the hearing

NZPA : Hundreds of men are unnecessarily dying of prostate cancer every year because doctors refuse to test them, a parliamentary select committee has been told.  READ MORE>

TVNZ: New Zealand specialists say men as young as 40 should have regular prostate checks, because they believe waiting until 50 is just too risky. READ MORE>

RADIO NZ: Parliament’s health select committee has distanced itself from accusations some doctors are responsible for the deaths of hundreds of men from prostate cancer. READ MORE>

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SelectCommitteeRoom

PROSTATE INQUIRY: One of Parliament's select committee rooms.

PROSTABLOG NZ: Mary and John -whose prostate cancer story appears on this website – will get their 15 minutes of fame tomorrow before the first hearing of the NZ Parliament’s inquiry into the disease.

Except they won’t be appearing before the Health Select Committee – they’ll be linked by teleconference hook-up.

John (real name Brian) is not well enough to fly from Auckland to the Capital city to be heard, so the committee has arranged the phone link from his and Mary’s (real name Kim) home.

They have been allotted a quarter of an hour tomorrow morning to tell the committee of parliamentarians about their struggle with Brian’s advanced cancer.

BarryYoung

BARRY YOUNG

The first day of hearings was originally set down for last Wednesday, but the House took urgency at short notice and everything else was cancelled.

Barry Young president of the Prostate Cancer Foundation of NZ, will be among those presenting submissions tomorrow morning.

It’s not clear at this stage whether PCF board member Mark Von Dadelszen, a Napier lawyer who was originally scheduled to speak tomorrow, will now get a slot.

I will be attending tomorrow to report the event for this blogsite, as well as NZ Doctor magazine.

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PROSTABLOG NZ: Those turning up for the first day of hearings at the inquiry into prostate cancer need to check first, because the NZ Parliament has gone into urgent session, meaning all meetings will be delayed or postponed.

The hearings before the Health Select Committee were scheduled to begin in Bowen House, Wellington, at 10am and go through to 12.30pm.

Tomorrow’s sitting was to be the first of two, the second set down for Wednesday next week, when Prostate Cancer Foundation board members will make their submissions.

There were no details available tonight of how a postponement tomorrow may be accommodated.

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