Colon cancer patient turned away from NHS – found success treatment in Japan
inews.co.uk
inews.co.uk
I always find these kinds of headlines very irritating. It always follows something along the line of: healthcare system of country A is so bad but healthcare system of country B is so good. Or: new innovative treatment for xyz is offered here, but not over there. And then there is the worst kind: I had a <MildSymptom> and my <HealthcareProfessional> turned me away, what am I even paying for!
These are invariably by residents of first world countries. People who expect that their relatively low monthly insurance payments should give them space age medical tech. Or that when they have some extremely rare disease, that they should get multi-million dollar niché treatment immediately.
Thing is - more often than you would think they really do. The closer you are to a big western metropolis, the more likely it is that you will receive state of the art care from a super-specialist with space-age tech. It’s just a matter of probability.
But there are also situations where you won’t. The system can’t afford to throw Dr. House and his team at every patient walking in off the street. You also just might not come across someone who understands your specific case and all the latest in medical treatments. It might be that the thing that can save you is so unique that only several people in the world know enough about it to be able to help.
Spewing hate at the system or at practitioners is just fucking awful. They’re essentially sitting there all day making trolley-track-payoff decisions.
Don’t get me wrong. It’s fantastic that this guy found a way, found the funding, got the treatment for his kids and all. And it’s awesome that he’s representing others seeking help. But our healthcare systems work incredibly damn well, it’s just that there is an infinity of ways in which we get sick…
It's as awful as it is unwarranted.
> The system can’t afford to throw Dr. House and his team at every patient walking in off the street.
Telling a patient they're inoperable or not a candidate for immunotherapy or are going to die in 6 months from their disease is immoral and yet very common. It's really not difficult to just say to someone "based on my experience and the protocols we have at this institution, this is what I believe to be the case for your situation but you may find others with a different perspective".
There's a seriously depraved amount of egoism and elitism in the medical world, in particular among younger medical professionals.
> They’re essentially sitting there all day making trolley-track-payoff decisions.
Yes but that's precisely not their job in a non-emergency context. They're not philosophers, they're not Maimonides. Their job is to provide medical expertise, not make value judgements on behalf of patients or arrogate themselves to a level of expertise or knowledge they don't have.
> Telling a patient they're inoperable or not a candidate for immunotherapy or are going to die in 6 months from their disease is immoral and yet very common. It's really not difficult to just say to someone "based on my experience and the protocols we have at this institution, this is what I believe to be the case for your situation but you may find others with a different perspective".
I am not sure exactly what he was told, but the article says 'Mr Dons was told the average survival time for someone in his condition was between seven and nine months', not that he was going to die in six months. This is a fair thing to share, and I believe aligns with NHS guidance on how to share this kind of prognosis.
The article goes on to say:
> NHS treatment would have involved urgent surgery followed by chemotherapy. But Mr Dons, who divides his time between the UK and Japan, was concerned that a cancer drug called Avastin, was not widely available in the UK.
So he wasn't told he was inoperable (in fact, he was offered surgery) or that he was going to die in 6 months or anything like that. He was offered treatment, but he chose not to take it because he'd heard of this Avastin wonder drug, which the NHS were not offering him. However, Avastin is far from a wonder drug and the jury is still out as to whether it actually prolongs life or improves quality of life at all.
> Yes but that's precisely not their job in a non-emergency context. They're not philosophers, they're not Maimonides. Their job is to provide medical expertise, not make value judgements on behalf of patients or arrogate themselves to a level of expertise or knowledge they don't have.
That's wrong I'm afraid (rhetoric aside). In the UK, it is definitely the case that they are making value judgements on behalf of patients (or more accurately it's not the individual practioner who is generally bound by value judgements made by other bodies). because we have a single payer healthcare system, which cannot simply waste resources on treatments which are expensive, and ultimately the decision rests on balancing cost, likelihood of treatment success, and expected QALYS if the treatment is successful. Adoptive cell transfer is still an expensive and experimental treatment, and is not generally available to adults in the UK, although it is available for children with leukemia. People cleverer than I am debate these topics and come to their conclusions. I am very glad that I do not have that job.
My main point though is that I think it's very damaging to suggest that a doctor is 'immoral' for sharing a prognosis and offering a treatment plan.
One of the important points here that the "privatisation is great" people are missing is that the reason Avastin isn't used off label so much is because the makers of Avastin have already spent vast sums of money suing the NHS to stop off-label prescribing, and they refused to allow Avastin to be licensed for one common off-label use (for AMD).
https://www.bbc.co.uk/news/health-30138097
https://www.hsj.co.uk/finance-and-efficiency/nhs-wins-landma...
https://www.theguardian.com/society/2010/aug/24/avastin-too-...
Long story, it costs more than the national minimum wage, and on average improves the life expectancy by only 7% compared to chemotherapy without Avastin (21.3 months vs 19.9 months). Fundamentally though the sticking point is the cost. The article also says:
> Data also suggests the trio of drugs means the liver tumours of 78% of patients shrink to such a degree that they are eligible for potentially life-saving surgery.
But this seems to be limited to liver tumours, not colorectal tumours, and it doesn't give any success rate for the surgery. The implication is that the liver tumours were previously too large to operate on, but that's not clear.
Pretty terrifying to imagine being subject to such a system.
The UK runs world-class trials in adoptive cell transfer and other cell based therapies for cancer. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4442586/
I surmise it was the radiation, chemotherapy, and surgery that contributed most to a 5+ year survival and no evidence of disease. This is available worldwide. Adoptive cell transfer has a complete response rate of 10-30% in unselected patients.
By far the most important recent advance in metastatic colon cancer is PDL1 directed immunotherapy for microsattelite instable colon cancer. This is also readily available in the UK
Source: I am a cancer doctor in the US and I treat colorectal cancer
It absolutely wouldn't apply here: while a competent patient can't insist on treatment doctors aren't willing to give, they're absolutely free to find one who is, in the UK or abroad, whether the treatment is effective or placebo, painless or excruciating. That does not necessarily extend to a next-of-kin; the court may rule there that the patient is better served by a relatively peaceful death rather than further treatment if it's likely to be futile and painful. Even so, that's really quite rare - a handful of very public cases about dying children notwithstanding.
The hearings are in the Family Division of the High Court, or sometimes in the Court of Protection, and the judgments are public. This[0] is a fairly typical one selected at random. A very sick child at the end of life with a progressive and incurable disease, with disagreement between the parents and medical staff about the best course of treatment. It's easy to understand and well worth a read if you're interested. I don't think the court is in any way infallible, but it's a world away from some of the more tabloid criticism that's thrown at it.
[0]: https://www.bailii.org/ew/cases/EWHC/Fam/2021/2927.html