We have progressed fantastically on the common medical conditions, but once you get into more rare stuff it gets a lot harder. Doctors have huge breadth of knowledge, but the sum of human medical knowledge could never fit into a human brain, even within a specialty, and even then there's so much we are not even close to understanding or knowing.
And for rarer stuff that is just getting discovered and learned about, there will only be a few specialists who are the ones figuring it out. That's why you go to lots of doctors that offer nothing, then a hint directs you to the doctors that are in the cutting edge of expanding knowledge.
Even if we financially incentivized each and every doctor to spend hours or days trying to find out what's going on with a patient that the doctor can't help with their current knowledge, it's quite likely that doctor could never help on the basis of a single patient. Medicine advances through discovery in groups of people and transferring knowledge from the results of one patient to others, incrementally. A single patient is far less likely to lead to advancement than a doctor having a group of people with similar symptoms.
The financial incentive for this discovery comes from research hospitals that collect these difficult cases, and obtain federal research grants from the National Institute of Health that allows them to do research and publish papers and share the knowledge. The proposed budget for the US drastically slashes this, greatly reducing our ability to advance medicine. And in advance of the budget cuts, the NIH is in violation of current contracts stopping payment, resulting in massive waste as research dies on the vine.
So what I'm trying to say is that the logistics of advancing medicine require grouping patients, and the place where that happens is at research hospitals, not at the local community doctor for everyday care. And our society is choosing, consciously or unconsciously, to drastically reduce access to that type of care.
Endometriosis is not rare. But it's a female disease. You will be shocked to know how many of diseases that women have to deal with are both quite common (some estimate up to 10% of women may have it), and completely ignored by medical community (which is still overwhelmingly male)
The article shows that 10% is a low estimate.
It is not completely ignored, but research is underfunded nearly to the degree that COPD is underfunded.
I think we need to distinguish two things here too: the bedside manner of doctors and whether they are willing to present the options that could lead to diagnosis, and then the amount of medical research that could give doctors some tools to better manage endometriosis.
White[1] males are extremely over represented in medical literature and research. And I'm saying it as a white male myself.
[1] This actually has ramifications beyond just gender. See e.g. https://www.statnews.com/2020/07/21/dermatology-faces-reckon...
I get a tingle in my balls? Here's an expedited ultrasound that we can do tomorrow. We can get you in for a blood test for cancer markers in two days.
My whole pelvis hurts when I have my period? Here's a motrin and an ibuprofen. Come back if it doesn't stop bleeding after a few days.
Like an effervescent abscess, the difference in treatment between males and females remains to this day. It's not even particularly hard to find female doctors that will outright dismiss symptoms in female patients because that's what they were taught.
I guess I must not be man enough to get the expedited treatment. Instead, I got a spinal cord injury and early stage bowel cancer.
I wonder how as a man, I can start convincing doctors in my country to give me this treatment all the other men are getting behind my back. Maybe next time I should start with dropping my pants first and hanging dong so they know im on their team.
At about 10% of women of reproductive age, endometriosis is way over on the “common medical conditions” side, not the “more rare stuff” side.
There's a bias here, but its not about how common the disease is, but who it affects and how.
This worldview requires believing that doctors dgaf about their family members.
My general impression from half recalling whatever stories about new medical discoveries, is that the motivation is more often a problem that a family member of the researcher has rather than a problem that the researcher personally has.
It's hard not to be incredibly cynical in the face of things like this. Way more than once have I thought "this is a cruel and unusual punishment" -- wait aren't those prohibited?? Oh right we get around that by making cruelty usual.
The number of doctors and nurses that attempt to keep people chronically ill rather than curing them if possible, is essentially zero. People get into that field frequently because they actually care, and people that actually care are the most likely to not follow a vague profit incentive that actively hurts people.
Similarly, most medical researchers would love to cure diseases, and actively seek out jobs where they do so and will object if asked to suppress curative research.
To the extent that what you describe exists, it is limited to MBA people at insurance companies and big pharma determining what gets funded for research. While exceptions always exist, the incidence of that attitude among the people actually doing the work is very close to nil.
Sorry to annoy you.
I'll grant you that that is a low percentage of the total US medical research spend. But also, most of the world does not have the same profit motive; in most Western countries, a cure is categorically cheaper for everyone than a chronic illness, because healthcare is paid for by taxpayers. And countries besides the US do plenty of medical research.
If the hypothesis were true that there exist cures to many diseases that simply haven't been explored due to profit motive, then I would expect countries without that profit motive to have a higher proportion of cures among their medical.discoveries than the US. I don't believe that is true though.
Basically my point is that the effect you mention likely has little actual impact on the larger medical field.
That's not actually a thing. A very high portion of premiums always has to be paid out. Not just because the regulators said so (IIRC the requirement is a 90% or 95% loss ratio?), but because they'd be undercut by a competitor long before they got in regulatory trouble.
A healthy person is a huge asset to an insurance company. Collect premiums for decades before they need much of any disbursal! They're still likely to be expensive at end-of-life, but you've profited WAY more from their initial healthy years.
(This, of course, is why insurance companies want to consider health in setting premiums, and why it's SO IMPORTANT that the government not allow that and keep things group-based. Because then you have the incentive to help the unhealthy people instead of just "milking the unhealthy people.* I pay the same as my coworker for my insurance. The insurance does NOT want my chronic condition to make me much more expensive to them than my coworker. They'd much rather it go away. Sadly, nobody can do that today.)
What the insurance companies don't* have is the incentive to actually push doctors and facilities to spend more time and money on looking for rare issues for unhealthy people. Because the searching is expensive, and there's a high risk it won't actually find a magic bullet.
So they'd rather have the median patient go from unhealthy to healthy, but if we want them to invest more in the long tail, it's gonna have to come from regulation.
And targeted investment in better detection*. But better detection is harder to sell than "expensive treatment drug" so again. Might need to get the state involved.
People want a pill to solve the ailments they have.
If you have high cholesterol and you decide to make lifestyle changes, you still have to go to the cardiologist. Because you have absolutely no idea if you actually lowered your cholesterol.
A big fallacy is people thinking they know if they are healthy or they know about their bodies. You don't. Even if you live a very healthy lifestyle, you still have to go to the doctor. You still need screening.
Most chronic diseases are primarily caused by lifestyle choices. This is largely outside the scope of medical practice. A doctor can prescribe metformin to treat type-2 diabetes and a statin to reduce cholesterol but they can't force you to clean up your diet and get some exercise.
Edit: https://www.uchicagomedicine.org/forefront/news/2023/august/...
The reason the “family member or friend who knows someone who can recommend a doctor” seems to work well, in my experience, is because that doctor then has some motivation to actually care, as the patient is connected to someone they already know and care about.
Our medical system financially incentivizes doctors to see as many patients as possible, but doesn’t financially incentivize actually making them better. For that, the system just hopes that doctors will care, without giving them the room to do so.