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.
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).
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.
Veteran 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.”
Brett 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.
Chair 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.”
Challenged 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.
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>