While a somewhat infantile title, it is also rather appropriate, as I just happened to be reading a book with this very title to my kids when I heard (another) report discussing the terrible state of bowel cancer identification and treatment in NZ. Bowel cancer is a massive killer in Aotearoa New Zealand, and we could be doing a lot better job of catching the disease early on. We know what we need to do, we just need to get on with it.
We do a Crap Job of Identifying Bowel Cancer Early
NZ does a poor job of identifying bowel cancer at a stage where it could be treated successfully. Note I use the general term bowel cancer, but most professionals talk about colorectal cancer because we are really talking about cancer anywhere on the lower intestinal tract.
In the latest in a long run of international studies, researchers from Auckland University revealed that in NZ the proportion of patients diagnosed with metastatic colon cancer and rectal cancer (where the cancer has spread through the body) is 24 and 19% respectively – as you can imagine things have got pretty bad by this stage, the chances of curative treatment are very very slim.
Now perhaps you think, this 24% figure of late stage diagnosis is not so bad, but then we look at the results of the bowel cancer screening pilot that has been run for the past few years in the Waitemata region, only 8% of participants are diagnosed with this late stage disease. The difference between the two numbers comes about because the pilot programme picks up some of those who have the disease earlier. As we have discussed before what we know from research into the population wide screening programmes that have been running all over the world for years, is that early detection reduces the death rate from bowel cancer, and the investment is such programmes is cost effective.
We need to get the late stage diagnosis and death rate down
Bowel cancer is the most commonly diagnosed cancer in New Zealand and the second-leading cause of cancer-related death. 1200 New Zealanders a year are killed by this cancer and in 2011, 3030 got the disease. Importantly our survival rates compare poorly to Australia (the country we most often compare our health care with). It is expensive to treat at a later stage, and the impact of later treatments on individuals, their families and the system is much more severe.
We are doing a pilot for a bowel cancer-screening programme – so what is the problem?
The problem is the government was advised on a number of occasions, by a number of advisors, at least 9 years ago, that bowel cancer screening appeared cost effective. No country has ever done a pilot screening programme without then going ahead with a population screening programme. Granted, there are major workforce issues that would take a long time to work through, which is why government were advised to start with a phased implementation of a bowel cancer screening programme as soon as possible to work through a few unknowns. These unknowns included how such a programme works for Maori (those most at risk of Bowel Cancer) how to liaise with GP’s, which particular laboratory tests would be the best, and precise cost effectiveness in NZ.
In other words the people in the know said “we know it works, we know it will save lives, we know it will probably save money in the long term because it does everywhere else, we know it takes a long time to set up from other countries, there are some questions about rolling it out in NZ, so get on and commit to it, but do it in stages to measure, adjust and adapt as you go”
The problem is a lack of will, not a lack of evidence or ability
Despite the advice to go ahead all those years back with a phased implementation, the government chose not to, instead they raised concerns about the cost of the specialists involved in providing colonoscopies, suggested there were other models that might be more cost-effective, then eventually agreed to a single pilot site. They said they wanted to wait for the results of a pilot programme in NZ before deciding if a national role out would be effective and committing to the infrastructure issues. If you were not aware of all the previous advice that had been given over the last decade, this would sound reasonable. And this is how it has been spun: a reasonable, staged approach waiting for the evidence.
So what have we learned from the pilot?
So now 9 years later we get confirmation of what was previously advised – that screening would pick up cases early, but in order to roll it out nationally we need to overcome significant workforce issues. No surprises there then.
To understand the particular bowel cancer screening workforce issues, lets go through how screening works (in a general sense). First people in the target age group without any symptoms (usually those aged 55 and over) are sent a kit (a plastic bag and small scoop shall we say) and they take a small sample of, as it is professionally termed ‘the stool’, package it neatly and send it away. This sample gets tested for blood at a lab. If blood is present it does not mean you have cancer, in fact very few people with a positive results at this stage will actually end up being diagnosed with cancer. Those with a positive blood result are booked in for a colonoscopy (a camera that is used to look at the bowel and intestines for signs of cancer, and cell samples can be taken at this point). This colonoscopy has to happen within a set timeframe to meet the quality criteria of the screening programme. If there are cell changes for cancer then treatment is intuited (this simplifies it but you get the idea).
In most cases people who have a colonoscopy will NOT have colorectal cancer, so you need to do quite a few colonoscopies per actual real cancer detected. All and all when you bring in bowel cancer screening you end up having to do a load more colonoscopies and colonoscopies are a tricky business that takes somewhere in the region of 7-8 years AFTER medical training to train for. In the mean time you still have those people who turn up outside of the screening programme with signs or symptoms of bowel cancer who also need a colonoscopy investigation (and more urgently than those in the screening programme) so you need to be able to make sure there is no delay for them in getting a colonoscopy either.
So there are significant workforce issues. You need a heap more trained colonoscopy technicians (there are other workforce issues too), and you need to be able to very closely monitor your waiting times for both those in the screening programme and those outside of it. One solution is to train nurse practitioners to perform colonoscopies – this will ease the burden in terms of the numbers of doctors required, and it is just as effective as doctors performing a colonoscopy BUT evidence suggests it will not be more cost effective. So there are no savings to be had.
We just need to get on with it
All ways you look at it, you need to start early to get your workforce capacity developed, and 9 years ago the Ministry of Health was advised to do just this, and to phase the implementation to test and tweak the programme, while in the background workforce capacity building could have been undertaken. Now years down the track we have not even committed to a national roll out and are struggling with being able to get the workforce (and physical infrastructure) sorted. Given it takes another 10 years from a national screening programme being fully implemented before all the benefits are realised it is going to be a long wait till we see our late diagnosis and high death rate from bowel cancer drop.
So when clinicians working in bowel cancer care say: “for those of us who look after people with bowel cancer and those of us affected by bowel cancer, that decision (to roll out the screening programmed nationally) can’t come soon enough.” It would be fair to say it is a fairly massive understatement
Because as the government drag their feet on this, in the face of evidence, advice, and ability, people continue to die of bowel cancer when it could be prevented and frankly Poo Bum to that.