NZ Parliament releases prostate cancer report

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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Our 1000th post – something special: what reduced the prostate inquiry to tears

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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Been denied a PSA or rectal exam by your doctor? Here’s a chance to speak up

PROSTABLOG NZ: The NZ Health Select Committee has asked the NZ Prostate Cancer Foundation to send any cases it knows about of men being declined prostate cancer tests by doctors to the Health and Disability Commissioner.

The request comes after PCF president Barry Young told the first day of the committee’s hearings into prostate cancer that GPs are doing this in NZ and it may be responsible for some men not being diagnosed in time for treatment.

The foundation already has ample evidence of this problem, says Barry Young, but this invitation by Health Select Committee chairman Dr Paul Hutchison is a chance for all NZ men who have faced this problem to speak out.

 If you or someone you know has been declined a request for a PSA test or digital rectal examination by a GP in NZ, please email details to the PCF at:

nationaloffice@prostate.org.nz

Or PHONE: 0800 477 678

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Widespread confusion over prostate cancer advice in NZ ‘untenable’ says chair of Parliamentary inquiry

PROSTABLOG NZ: The widespread confusion many men feel over the advice they receive on early detection and treatment of prostate cancer is untenable, says Dr Paul Hutchison, chairman of the NZ Parliamentary Health Select Committee. READ MORE>

He says this in an article he wrote for today’s Dominion Post newspaper in Wellington, just two weeks from when his committee will be hearing submissions to its inquiry into prostate cancer screening and treatment.

That a leading New Zealand urologist, Robin Smart, recently concluded ‘‘the evidence suggests that between 200 and 300 of the 600 men who die annually of prostate cancer could be saved by current technology’’ indicates greater efforts need to be made, he writes.

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Some tough questions for the NZ parliamentary inquiry into prostate cancer

PROSTABLOG NZ: The NZ parliamentary inquiry into prostate cancer closes off its submissions this Friday…and to mark the occasion, I want to write about a man called Tony.

He’s a mid-50s Kiwi bloke. Friendly, articulate, life-experienced, a bit more adventurous, perhaps, than some.

He and wife Marlene (at right) run an excellent bed and breakfast in Mt Eden, Auckland, under the shadow, almost, of where $300 million of my money is being spent revamping Eden Park for the rugby world cup in 2011.

Tony drove trucks across America for a while, until the mid-2000s. Marlene missed him, so joined up, taking the wheel during daylight. They had a fantastic time.

But now they’re back home, with Tony working three jobs as they build up the B & B (left) during the recession.

He runs a disability transport service with his vans, walks people around central Auckland city at night telling them ghost and murder stories, and helps Marlene with the homestay.

By all odds, Tony has a 50% chance of hosting a cancer in his prostate.

He doesn’t know it yet, either way. He hasn’t been checked. He’s been too bloody busy.

But now he’s going to the doc and he’ll endure the finger up his backside and the scratch in his arm.

Why? Because Lin and I stayed with Tony and Marlene last weeked and he got an earful from me about getting checked.

Why am I telling you this?  Because Tony is fairly typical of most of the Kiwi men I know (the ones who haven’t had prostate cancer). They either don’t get tested, get only the PSA, or were tested “once” and think it’ll be fine for a few years.

They are what the Health Select Committee inquiry into prostate cancer screening and testing is about.

Two bitterly opposed protagonists

Anyone who thought NZ’s recent prominent murder trials (Bain, Weatherston, et al) were problematic for their juries, spare a thought for the Health Select Committee.

Not only must it contend with the politics of health care, it also faces two ferociously opposed lobby groups that can each present a compelling case.

On one side will be the NZ prostate community, comprising prostate cancer patients, survivors, some of their medics (GPs, urologists, urology nurses, oncologists, etc), and a vociferous band of patient advocates, the 330-strong Prostate Cancer Foundation.

On the other is the health care bureaucracy, encompassing a heavyweight team of health professionals, managers, advisers, epidemiologists, academics, researchers and various subgroups that include some GPs…and the NZ Cancer Society.

Both will lobby the inquiry with statistics, research, study results, precedents, and on one side, at least, some emotionally gruelling anecdotal evidence.

What will each side say?

The bureaucrats (the Ministry of Health and its pilot fish advisory committees) will say what it has always said: we should not adopt a screening and testing programme like that offered to women for breast and cervical cancer because it will do more harm than good.

Their argument is strong, and is the same one argued by other governments’ medical agencies.

It is this: many men (maybe 50%) will get prostate cancer in their lifetime, but only a few (12% to 16%) will contract a form that has the potential to kill them – and there is, as yet, no way to know (before treatment) which kind a man has got.

They say if there is outright encouragement for all men to be tested, whether they have symptoms or not (most won’t, initially), it will lead to unnecessary treatment.

This would cost the government a lot more as well, some argue, but that’s not a point the bureaucracy will highlight, since it doesn’t sound very humane.

Meantime, leave it to patients to raise such matters with their GPs, then make their own decisions based on facts they glean from consultation and research (ie, Dr Google).

The bureaucrats will say there is good reason to trust GPs to do the right thing.

A survey of nearly 350 general practitioners published in 2003 (GP survey 2003) found 74% would PSA test a 55-year-old man who asked (or presented for an annual check-up), with that number rising to 93% if the man’s family history included prostate or breast cancer.

The prostate community argues that since PSA blood tests became widely available in the 80s there has been significant decline in the number of deaths from prostate cancer, and this could be accelerated if screening and testing were promoted to the whole male population.

They say leaving it up to men to raise prostate testing with their doctors is not good enough.

Some men don’t go to the doctor unless they have to, which is a particular problem with prostate cancer, a devious disease that often shows its face when it’s too late for treatment.

Non-consultation is a factor that may apply particularly to Maori and Pacific Island men: the former have twice the death rate of non-Maori. No statistics are available for PI men, it seems.

The prostate community is concerned that some GPs are confused about their role in the prostate process.

Some refuse to test, some don’t proffer advice unless the patient speaks up first, some offer PSA only, some offer both PSA and digital exam. Some men die as a direct result of such a hit-or-miss system, the PCF says.

The foundation and its medical advisers know many cases of men who discover prostate cancer too late.

These are tragic stories, exemplified by the account being written on this website by Mary about her struggle with the medical profession to get treatment for her husband, John. It’s a heart-breaking tale.

There is some bitterness in this debate.

The prostate community is seen as deeply swayed by the emotional influences of suffering the disease or benefiting from dispensing treatment; the bureaucracy is considered heartless, unduly influenced by statistics, gender-biased, and penny-pinching.

Both sides are gathering their forces as this is written.

The Ministry’s line, probably, is encapsulated in advice it received from its satellite National Screening Advisory Committee this winter, after the committee examined the results of the two large overseas screening studies reported in March.

It recommended the Director General of Health should note that:

a) the benefits of PSA screening for prostate cancer identified in the European trial were small;

b) no benefit of prostate cancer screening was identified in the US trial;

c) both trials identified considerable screening harms related to over-diagnosis and over-treatment;

d) the benefits of PSA screening identified in the European trial were observed using an average screening interval of four years, whereas a screening interval of one to two years is more commonly used in general practice;

e) the utility of prostate screening increases with age;

f) a longer study follow-up period may alter trial results; and

g) a watching brief of these two prostate cancer screening trials should be kept, including similar trials of prostate cancer treatment effectiveness, to inform men about making prostate screening decisions.

There is some inevitability, then, about how this inquiry will proceed.

The Ministry hasn’t changed its stance, and the PCF has grown all the more powerful since it gathered considerable funding from the Movember crusade in 2007.

Which suggests the outcome will be influenced by political expediency. As these things usually are.

It’s not a good time to be appealing to a government that’s busy slashing spending in all sectors.

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PROSTATE INQUIRY: NZ parliamentary committee releases terms of reference

JULY 2: GUIDE2.CO.NZ: Parliament’s health select committee has issued terms of reference for its inquiry into early detection and treatment of prostate cancer.

The inquiry was announced on May 27 and the committee said today it would:

• Seek a summary of the contemporary literature on the subject including incidence, mortality, groups at risk and testing options;
• Seek opinions from asymptomatic men and patient advocacy groups;
• seek opinions from specialist clinicians, radiation oncologists, urologists and general practitioners, epidemiologists and ministry officials;
• Seek the best methods to promote awareness for early detection and treatment; and
• Seek a cost benefit analysis, if appropriate.

The committee said it would call for submissions in the next few days.

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PROSTATE INQUIRY: What’s caused NZ government to revisit prostate screening issue?

JUNE 21: PROSTABLOG NZ: While the hopes of those pushing for prostate cancer screening were buoyed by last week’s NZ Government announcement of a select committee inquiry, the chances anything will change are uncertain.

Politicians, even those with medical backgrounds, must rely heavily on the advice of experts when it comes to health policymaking, and any signs the experts are about to change their views on this complex issue are not encouraging.

Medical people with an interest in prostate cancer have been waiting for most of this century to hear the results of a couple of massive, long-term, random studies on PSA testing and screening, which were expected to prove one way or another whether population-based screening is the right thing to do.

Mention of the trials, in the US and Europe, peppers the research papers of medical academics, especially those most opposed to screening all men, the epidemiologists.

The trial results are now in (published in the New England Journalism of Medicine in March) and those looking for irrefutable evidence either way will have been disappointed. The Australian Prostate Cancer Foundation went so far as to say the trials were flawed and the results suspect.

NZ’s Ministry of Health has been keeping an eye on all this, it says, and one of its committees met last month to discuss these and other recent findings.

The MOH promised a statement after this process, but has kept quiet, and instead the prostate community on June 18 got news of the new parliamentary inquiry.

The announcement, incidentally, came more than a month after the Health Select Committee actually made its inquiry decision, which on Parliament’s official website is dated May 27.

So what’s happened?

It seems a confluence of the following has produced the right conditions for something to happen, a perfect storm:

•    a new government, Minister of Health, and Health Select Committee;
•    a five-year gap back to the last official review of NZ’s prostate screening policy;
•    the release of the randomised studies’ results;
•    and with that, an upsurge in world-wide debate;
•    the Prostate Cancer Foundation of NZ’s quiet and consistent lobbying in favour of some sort of screening;
•    continuing horrific statistics for Maori men, who die of prostate cancer at twice the rate of non-Maori;
•    and high current interest in prostate cancer from researchers and drug companies, especially in the US.

The political aspect of this development is the most under-reported (NZ media coverage of prostate cancer tends to be sporadic and superficial) and therefore potentially the most interesting.

The Health Select Committee last examined prostate screening in 2006.

The then-committee – comprising MPs Sue Kedgley (chairperson), Maryan Street (deputy chairperson), Dr Jackie Blue, Dr Jonathan Coleman, Jo Goodhew, Ann Hartley, Sue Moroney, Hon Tony Ryall (now Minister of Health), Lesley Soper, Barbara Stewart and Tariana Turia – considered a 2005 petition from ACT MP Muriel Newman (signed by 585 others) calling for a change in screening policy.

After hearing Ministry of Health advice, the committee rejected Newman’s call for population-based screening, but recommended the government develop up-to-date guidelines to assist GPs and their patients make decisions about testing and treatment. The MOH produced these in 2007.

In its report, the committee also said:  “We recommend that the Government evaluate the evidence of the two trials that are presently being conducted into whether screening can reduce the incidence of death from prostate cancer, and re-assess its policies as soon as they are completed.”

In opposition over the past decade, National MPs and one of their natural allies, ACT, have been vociferous in questioning what they saw as lack of action by the Labour-led government.

Many of these parliamentarians – Muriel Newman and NZ First list MP Barbara Stewart notable among them – are now out of Parliament, but two remain who have voiced their concerns in Parliament about prostate cancer.

One is chairman of the new Health Select Committee, former clinician Dr Paul Hutchison, who featured in the House on September 14, 2004, when he pushed then Labour Minister of Health Annette King to concede the Government wasn’t doing enough about prostate cancer.

She conceded nothing, and stuck with her MOH advice.

Here’s how Hansard recorded the exchange:

September 14, 2004: Dr Paul Hutchison to the Minister of Health: Does the Ministry of Health have a view on the value of initiating a ‘prostate awareness’ campaign; if not why not?

Hon Annette King (Minister of Health): Yes. The Ministry supports the views of the National Health Committee which does not recommend prostate screening for asymptomatic men because of its lack of proven benefit and the potential for harm arising from unnecessary radiotherapy, surgery or other treatment at this stage, but we will continue to monitor international trends and research.

The committee has, however, published information regarding issues men need to consider when seeking prostate screening tests in the brochure Checking for Prostate Cancer, Information for men and their families. This brochure is available on the New Zealand Guidelines Group’s website: http://www.nzgg.org.nz.

Hutchison: Is she satisfied that the April 2004 report of the National Health Committee relating to prostate cancer screening provided up to date and best practice advice; if not why not?

King: Yes.

Hutchison: What specific public health programmes are available to alert men to health problems such as prostate cancer; if there are none, why not?

King: There are no specific health programmes to alert men to prostate cancer because routinely checking men without symptoms of prostate cancer is not recommended. However, I refer the member to written question No 13279 regarding the National Health Committee and New Zealand Guidelines Group’s brochure on this issue. For initiatives in other health programmes, I refer the member to written question No 13269 (2004).

Hutchison: What advice does the Health Ministry recommend to men, specifically to help prevent and achieve early detection of prostate cancer, and if not why not?

King: The Ministry of Health endorses the guidance produced by the National Health Committee, which states that men who have concerns should see their GP. These guidelines are available on the National Health Committee website (http://www.nhc.govt.nz/publications.html).

The second is National list MP Dr Blue (another former clinician), who questioned the government in 2006 and 2007.

Here’s how she is recorded in Hansard:

October 16, 2006: Dr Jackie Blue to the Minister of Health: Has any preliminary work been done by the Ministry of Health on the costing and logistics of a prostate cancer screening programme; if so what are the results of any preliminary work?

Hon Pete Hodgson (Minister of Health) replied: In April 2004 the National Health Committee (NHC) published its report to the Minister of Health on prostate screening in New Zealand. The report did not recommend population based screening for prostate cancer. No further work has been done by the Ministry of Health on the costing and logistics of an organised population based screening programme.

Blue: When did PSA or prostate specific antigen testing become available in New Zealand?

Hodgson: The Ministry of Health is not aware of the exact date the PSA test became available in New Zealand. However, statistics in the publication Cancer Trends and Projections indicate that the PSA test was being more widely used from the 1990s onwards.

Blue: How does New Zealand’s current prostate cancer screening guidelines compare to Australia, United Kingdom, United States, Canada and European countries?

Hodgson: New Zealand’s current policy on prostate cancer screening is the same as Australia, United Kingdom, United States, Canada and European countries, and aligns with the recommendations of the World Health Organization.

Blue: Have the interim results of the prostate cancer screening trials involving hundreds of thousands of men in Europe and the United States been made available to the Ministry of Health; if so, what are the preliminary results; if they are not available, when are they expected to be available?

Hodgson: The Ministry of Health is aware of two large randomised trials occurring in Europe and the United States. The first interim results of these studies are expected by the end of this year.

Blue: What resources does the Ministry of Health provide to general practitioners regarding prostate cancer screening; when were they last updated?

Hodgson: The Ministry of Health has published a pamphlet Screening for Prostate Cancer for health care practitioners, which is currently being updated. The pamphlet was produced by the New Zealand Guidelines Group in 2004 and is available on the Group’s website (www.nzgg.org.nz).

Blue: What are the current guidelines for prostate cancer screening; when were these last updated?

Hodgson: There are no New Zealand guidelines for prostate cancer.

February 27, 2007: Dr Jackie Blue: Can the Minister guarantee that updated breast cancer surgical guidelines will be forthcoming, or will it be like the long-awaited update of the prostate cancer guidelines on the Ministry of Health website, which were promised 16 months ago but still nothing has happened?

Hon PETE HODGSON: The guidelines are under development now.

How do others on the eight-member committee stand?

One, Green Party list MP Kevin Hague, has declared his opposition to the inquiry even before it’s begun. The deputy-chair, Ruth Dyson, has on occasion been a defender of Labour’s “no-screening” policy over the past three terms.

The views of the other four might become apparent in a thorough search of Hansard, but are not prominent.

What are those in favour of screening up against as they prepare their submissions for the committee’s hearings, whose terms of reference will be announced this coming Wednesday (June 23)?

One of the strongest opponents is Ann K Richardson, Associate Professor, Department of Public Health and General Practice, Christchurch School of Medicine and Health Sciences, University of Otago, whose 2005 paper for the NZ Medical Journal said the following:

“The results from autopsy studies and the Finasteride trial are a warning.

“If healthy men have PSA tests, some will be diagnosed with prostate cancer that they would otherwise never have known about, and that would never have threatened their lives. This would be bad enough, but many men who are diagnosed with prostate cancer are offered treatment such as radiotherapy or surgery, and these treatments have significant side effects. The potential side effects include impotence, incontinence, diarrhoea, and death.

“Some of the men who suffer these side effects would never have known they had prostate cancer in the absence of screening, so they will have been directly harmed as a consequence of being screened.

“Although it is possible to understand and perhaps explain opposing views on prostate cancer screening, examining the risks and benefits shows that prostate cancer screening is not justified at present.

“Whether there is any benefit from prostate cancer screening is unknown. It is inappropriate to support screening in the hope that it will be found to be beneficial, since this would be gambling with men’s health.

“Prostate cancer screening fails to meet criteria for screening, and carries potentially serious risks. In the absence of conclusive evidence of benefit, it is entirely possible that prostate cancer screening could cause more harm than good. Therefore, at present, it is unethical to offer prostate cancer screening.

“In the future, screening should only be offered if the randomised controlled trials of prostate screening that are currently underway, demonstrate a benefit.”

The debate about prostate cancer screening has been quiet for a while.

One of it’s most memorable moments came on April Fool’s Day, 2004, when a Ministry of Health-hosted body called the National Health Committee made the following announcement: ‘No, not yet, to prostate cancer screening.’

The question remains: will those who didn’t get the joke then have any reason to laugh sometime later this year when the latest examination of this controversy that won’t go away reports back?

Making submissions to select committee: http://www.parliament.nz/en-NZ/PB/SC/MakeSub/

Email committee chair: paul.hutchison@parliament.govt.nz

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