[googlryas]

A fairly straightforward answer is that the government's goals are not necessarily aligned with your own. You, presumably, care very much about your own personal health. You also care about other people's health, but you really, really care about your own health, and probably don't want to die earlier than you need to.

The government, on the other hand, doesn't generally care about individuals, and is working on a statistical level. A good government wants the population overall to be in good health, and has a budget within which it must operate. It may make more sense for the government to ignore your rare disease if detection/treatment is expensive, and that money can be better used to save, say, 10 people with a more common disease.

Now, if the government was just providing health information, and individuals were on the hook for payment, this disconnect wouldn't really exist. But if the government is also providing the healthcare services "for free" to individuals, then there is an incentive to downplay testing for rare or expensive to treat diseases due to the cost/benefit ratio.

[jeromegv]

Is that supposed to be an advertisement for private healthcare? With insurances companies deciding based on profit margins? I'd say the government incentives are a lot more aligned to have their population healthy and productive, than the insurance company looking at how much you paid for your premium and how much the treatment is.

[googlryas]

Pointing out a conflict of interest is not an advertisement for anything. It is what it is. You could also have publicly funded, 100% government provided healthcare which provided some base level of care but allowed individuals to pay for specific treatments if they wanted them and they weren't a part of the base level of care.

[6t6t6t6]

Most public healthcare systems provide excellent treatments for the majority of the population. And, if you have some rare condition that can only be treated with some state-of-the-art cure that is only provided by some hospital out of the country, and you have several hundred thousand $$$ in your bank account, nobody will stop you from paying the treatment from your pocket.

[nickff]

It's best to know and understand each party's interests. Insurance companies want to keep you alive and paying premiums. Hospitals (government, for-profit, and non-profit) want you to receive a lot of treatment. The government treasury wants to keep you alive as long as your future tax payments exceed their healthcare and other expenditures. Government health departments have an extremely complicated set of incentives, dependent on exactly how they're organized.

[decebalus1]

> the government's goals are not necessarily aligned with your own.

as opposed to the private sector?

> But if the government is also providing the healthcare services "for free" to individuals, then there is an incentive to downplay testing for rare or expensive to treat diseases due to the cost/benefit ratio.

Which is what current private insurers often do. The government's incentives aren't just to cut costs and run more efficiently. It mostly cares about staying 'the government' and having people live long enough to pay taxes. I want to hear the same argument when you're talking about the government's incentives to be more cost effective when it comes to funding the armed forces.

I think the gist of it is that as an individual, in theory, you have leverage over the government via your votes or representatives. You have none of that when dealing with the private sector. So in this case, if I'm bothered by what the government publicizes about diseases and such, I have several tools at my disposal to deal with it (FOIA requests to track down who's responsible, town halls, writing to the representatives, lobby, voting etc..). If a private company does it, what am I going to do? Write a bad review?

[googlryas]

The private sector will generally be happy to give you a service if you come with cash in hand. Which is why in the UK I can go get a brain MRI at a private clinic if I had a dream that I was developing MS, whereas I can't do that with the NHS.

[nickff]

The terse version of this is to say that the government would prefer you die cheaply rather than live at great expense.

[PragmaticPulp]

That's not really what's happening at all. It's often cheaper to get an early diagnosis or catch a condition before it progresses too far.

The government doesn't actually hide information about diagnosing or treating diseases, even rare or expensive ones. They do, however, take into account the relative risk of false positives and resulting unnecessary treatments, which often outweigh any benefit of proactive testing for rare diseases.

It's counterintuitive, but if you have a 99% accurate test for something that means you're going to end up with 1 in 100 people getting false positives and undergoing potentially expensive (out of pocket) or dangerous diagnostics and treatments. When considering rare conditions that might only occur in 1 out of 100,000 patients each year, a 99% accurate test results in 1000 unnecessary false positives just to catch the 1 true positive. At scale, this can produce a lot of problems that can actually make life worse on average for the population rather than better.

[nickff]

I agree that there are valid statistical reasons to limit testing, but governments ration care and allow for long wait times when they are responsible for paying the costs. Faster testing and treatment is generally believed to be one of the best things you can do to improve patient outcomes, and government healthcare systems are notoriously bad at this (even worse than private healthcare).

Long wait times don't reduce the rate of false-positives, and false diagnoses. Long wait times deter people from seeking treatment, thus reducing costs.

[quickthrower2]

The government is pulling the lever on the train track thats saves 5 but kills another 1.

[shuntress]

You are talking about "The Government" as if it is some uncontrollable force of nature. Here in reality, we are actually self-governing.

Obviously it's messy, complicated, and not as simple as just "deciding what to do and doing it".

But it is fair to say that pretty much every rational person agrees that we should take care of each other including anyone with a rare condition.

[adolph]

> Here in reality, we are actually self-governing.

Given there is more to we than just me, "The Government" would refer to mostly other people and specifically other people with a particular proclivity toward involving themselves in the lives of others, to what effect is in the eye of the beholder.

[PragmaticPulp]

> A good government wants the population overall to be in good health, and has a budget within which it must operate. It may make more sense for the government to ignore your rare disease if detection/treatment is expensive, and that money can be better used to save, say, 10 people with a more common disease.

That happens on the research funding side (e.g. it makes more sense to spend research money on cancer or heart disease than on an obscure disorder that only 10 people have).

However, it's not true that the government will provide misinformation or otherwise get in the way of diagnosing your rare disease to save money.

There are a lot of studies about the cost/benefit tradeoff of early diagnosis and preventative screenings. The goal isn't to reduce healthcare expenditure, it's to reduce problems and deaths from unnecessary procedures and treatments. We learned a lot from previous eras of over-treatment and over-testing that led to a lot of unnecessary treatments due to false positives. The risks of over-treating can actually outweigh any benefit of excessive testing, for example.

This is counterintuitive to individuals who want to order huge numbers of tests all the time just in case something might be wrong. The problem is that a lot of diseases may have occurrence rates on the order of 1 in 10,000 or 100,000 per person-year, while the tests may only be 98% to 99% accurate. This 1 to 2 in 100 will be misdiagnosed as false positives and potentially put on expensive medications or treatments that have negative health consequences. It's a very real problem that isn't obvious from the individual level but becomes very obvious at the population level when you start looking at the details.

But no, the government isn't actually hiding information about diseases or misleading people in an attempt to reduce costs. With many conditions it's actually much more expensive to be diagnosed later in the disease than it is to be diagnosed earlier when many conditions are more receptive to treatment.