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Posts Tagged ‘Barry Young’

PROSTABLOG NZ: Nothing has been publicly announced so far as I know, but what has happened to NZ’s Mr Prostate Cancer?

Barry Young – long the voice of prostate cancer in this country – seems no longer to be president of  the Prostate Cancer Foundation, the organisation he steered for the last decade.

Go to the foundation’s website and you’ll see the president is now listed as Hawkes Bay lawyer Mark von Dadelszen.

Barry announced at the 2009 foundation AGM that he would be stepping down.

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catheter2

ME and my catheter.

PROSTABLOG NZ: More on catheters.

An English industrial design student called Sam Gough has been in touch to ask if he can use my account of having a catheter after surgery last March (see Comments).

Sam is researching medical equipment and is interested in the catheter.

If any of you have stories to tell about this indispensable – but seemingly at times devilish – piece of kit, please contact him at: samgough23@hotmail.com

I recounted a couple of negative anecdotes about catheters in last night’s blog, so perhaps I need to balance it with others that aren’t quite so downside.

One mate who went through radical prostatectomy a year before I did said it was a handy bit of gear: “You could go to the pub and just piss the beer straight through.”

He was surely joking, and it was probably just an attempt to allay my fears.

Another said: “Ah, the catheter…you’ll grow to love your catheter.” More irony, I guess.

Barry Young, president of the NZ Prostate Cancer Foundation told me that when he was recovering from surgery 10 years ago he had his catheter removed after a week or so, as you do, but then had recurring incidents of not being able to pee.

It would happen at the most inopportune times, so he had to learn to insert a catheter tube on himself.

Imagine that! After all, for some of us, the damned thing is put in place when we’re under anaesthetic, so we can only look and marvel later at how such a bloody big thick piece of tubing can be introduced to what you always imagine is a such narrow space.

Incidentally, Barry had the problem only temporarily. He has been fully recovered for 10 years, and probably – like all good boaties who suffer hell in a storm then quickly forget about it in the safe haven of harbour – now has trouble remembering the details. Maybe not.

The growing-to-love-your-catheter comment came back to haunt me straight after my surgery, when Bob Hale, the highly professional urology nurse at Wellington Hospital, came to see me in the recovery ward.

I made a gauche comment about “loving my catheter” and he looked at me sternly: “Having a catheter is one of the most uncomfortable experiences a man can have,” he said.

Bob turned out to be anything but stern. He was the one who took the tube out later and he did such a great job I felt no discomfort at all.

One more catheter anecdote: I have an old friend who, nearing 80, was admitted to Auckland Hospital with urinary problems and was discovered to have a very enlarged prostate. He had a catheter inserted for temporary relief and surgery was advised.

His response: no way. And he still has the catheter – a year later.

He truly loves his catheter.

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OPINION

PROSTABLOG NZ: For now, the debate about whether all men should be screened for prostate cancer is dead.

For now.

For sure, it will re-ignite at some future time, as prognostic tests are improved to the point where doctors can tell when  a prostate tumour discovered in a man needs treatment and when it can be left alone.

Why is the debate dead in the meantime?

Two studies published by the British Medical Journal today back up what most analysts have been saying since the March publication of early results of the two big randomised trials that have been looking at PSA/digital testing.

That mass screening will uncover a lot of cancers that are harmless. Over-treatment will result. It has already.

Even the NZ Prostate Cancer Foundation appears to have conceded this is the case.

At last week’s initial hearings by the Parliamentary inquiry into prostate cancer, Foundation president Barry Young said the organisation was “not dogmatic” about screening.

So where does this leave things?

Should we abandon PSA and rectal exams?

Hardly. They are reliable tools for diagnosis and must still be available to men who ask for them, men whose families have a history of prostate or breast cancer, men with symptoms like reduced urination, unexplained pains, blood in the urine, etc.

Where the debate still needs to continue is in the arena of primary health: how can the confusion that appears to reign among GPs and their patients be clarified.

And does all this rule out a marketing campaign urging men to be checked?

No way. It just needs to be done with a clear message.

Not a lot to ask.

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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.

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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: The NZ Parliamentary inquiry into prostate cancer screening and testing will hear submissions on September 16 and 23. The Prostate Cancer Foundation’s president, Barry Young, will give his evidence on September 23.

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AGMballoons

BLUE BRANDING: Members of the Prostate Cancer Foundation with balloons used by a marketing company to explain the new Blue September fundraiser.

AUGUST 1: PROSTABLOG NZ: A new executive committee to run the Prostate Cancer Foundation of NZ (PCF) was elected by 50 PCF members at their annual meeting in Napier.

Long-time president Barry Young, Thames, was re-elected for his sixth term, after a secret ballot when he was challenged by Hamilton member Peter Forman.

Young’s wife, Carolyn Young (pictured with Barry), stepped down as long-serving Foundation secretary and was replaced unopposed by Ian Hedley of Orewa.

Dinner Barry & CarolynTwo vice-presidents were elected – Dunedin’s Keith Beck, who also runs the PCF website, and long-serving Foundation treasurer Trevor Green, Auckland.

The new executive committee elected by secret ballot from 13 candidates will comprise Dene Ainsworth (Porirua), Ian Chapman (Nelson), Mark von Dadelszen (Havelock North), Nicholas Jack (Auckland) and Prostablog author Jim Tucker (Wellington).

After a surplus of $1.83 million in the financial year to March 31, 2008, the Foundation lost $136,688 in the last financial year.

The main reason was a severing of ties with the Australian-owned Movember fund-raising campaign, which gave last November’s takings to the Cancer Society and others rather than PCF. The 2007 Movember had helped PCF boost its income by more than $2 million.

No money came from fund-raising last year, although the Foundation made $424,672 from donations and memberships ($268,934), interest on investments ($148,255) and other sources.

Despite the loss of Movember (which criticised the PCF for not appearing to use the money it handed over), the Foundation is still in a strong financial position, with total equity of more than $2.5 million (compared with about $3 million the year before). It has most of its money conservatively invested with the ASB Bank.

AGMtoptableSome at the annual meeting were critical of the lack of detail in the balance sheet, but treasurer Trevor Green said the auditors passed the accounts and they were presented to the meeting in the form prepared by the organisation’s accountants.

President Barry gave an assurance than more detailed accounts would be made available as soon as possible. This had not happened in time for the annual meeting.

The auditors, WHK Gosling Chapman, who completed their audit two days before the annual meeting on July 25, made the following comments about the accounts:

Control over revenues from donations and membership income prior to being recorded is limited and there are no practical audit procedures to determine the effect of this limited control.

In this respect alone we have not obtained all the information and explanations that we have required.

In our opinion, except for the adjustments that might have been found to be necessary had we been able to obtain sufficient evidence concerning donations and membership income

  • proper accounting records have been kept by the foundation as far as appears from our examination of those records; and
  • the financial statements on pages 3 to 8 comply with generally accepted accounting practice; give a true and fair view of the financial position of the foundation as at 31 March, 2009 and the results of its operations for the year ended on that date.

AGMcrowd

No budget for the coming year was presented to the meeting.

Barry Young said in his annual report the PCF had had a “most interesting” year, but had emerged as a “more mature organisation better equipped to meet its future obligations”.

It had been affected by the recession, but conservative policies meant it was protected from losses on investments.

“Lower bank interest rates have been the cause of main concern and with commitments to projects (including research) reserves have been reduced.

“Care needs to be taken to maintain reserves at a level where they provide adequate return to enable the Foundation to fulfill the role now expected of it.”

The Foundation continued its financial support of a project seeking markers of biological behaviour in prostate cancer tumours, having given $153,000 over two years.

“Other applications for funding have been postponed until the financial situation clarifies,” he told the meeting.

The PCF funded a project in Palmerston North involving health checks for 100 men and the results of analysis were received two days before the meeting, not leaving enough time for him to absorb and relay them.

In answer to a question from the floor, he said the Foundation would be making submissions to the upcoming inquiry into prostate cancer screening by Parliament’s Health Select Committee. These were being prepared by the organisation’s medical committee in time for the submission deadline of August 21.

The PCF has embarked on a replacement fund-raising campaign called Blue September, which was outlined to the meeting by the NZ representatives of an Australian marketing company called MWC Media.

The representatives showed charts indicating that sponsors lined up for the campaign this year would donate about $150,000.

One, Watties, has agreed to produce a line of baked beans in cans coloured the foundation’s new blue.

Other ideas came forward from the floor of the meeting, including Lin Tucker’s suggestion the foundation should persuade a prophylactic company to make blue condoms.

The Blue September re-branding has so far cost the PCF $168,000.

The PCF has 329 paid-up members and active local branch organisations in Whangarei, North Harbour, South Auckland, Hamilton, Tauranga, New Plymouth, Gisborne, Hawkes Bay, Wairarapa, Mana, Otaki, Wellington, Nelson, Canterbury, Dunedin and Southland. An organiser has been found to set up branches in Auckland.

Early in the meeting, members saw brief extracts from the first two DVDs of a series on prostate cancer being made by veteran TV producer Robert Boyd-Bell. Featuring top urologists, the videos are being progressively posted on the Foundation’s website.

The meeting was followed by a dinner:

DinnerDene&Ans

ABOVE: Executive Committee member Dene Ainsworth (left) in serious discussion with immediate past Vice-President Ans Parder, Christchurch.

Dinner Ian Chapman

ABOVE: Ian Chapman, Nelson, who was re-elected to the executive committee.

Dinner Ian Morrieson

ABOVE: Doreen and Ian Morrison, who run the foundation’s branch in Mana north of Wellington.

DinnerGeneral

ABOVE: Prostablog blogger Jim Tucker (bald, at left) in conversation with Jan Ainsworth.

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