Comment by epistasis

Comment by epistasis 2 days ago

12 replies

Another way to look at it instead of "they don't care" is "they have nothing they can offer."

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.

dragonwriter 2 days ago

> We have progressed fantastically on the common medical conditions, but once you get into more rare stuff it gets a lot harder.

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.

  • epistasis 2 days ago

    I really regret using "common" here, because the issue with endometriosis is the complexity of the disease, lack of understanding, and lack of clinical management tools. Not the rarity.

  • tbrownaw 2 days ago

    > 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.

    • ipaddr 2 days ago

      Most doctors who do this type of medicine wouldn't work with family members. Not many fathers, uncles would work on their kids, nieces or mothers and not many mothers either. You would go to a different doctor if possible.

      • tbrownaw 2 days ago

        "They don't care because it's doesn't affect them personally" requires "they don't care about other people".

        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.

dinkumthinkum 2 days ago

While I might be sympathetic to what you’re saying, endometriosis is not a very rare condition.

troupo 2 days ago

> but once you get into more rare stuff it gets a lot harder.

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)

  • epistasis 2 days ago

    You are correct, and my language was not very helpful there!

    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.

  • ipaddr 2 days ago

    For IBS you get similiar treatment male or female. It's about medicine not having answers for treatment and lack of easy testing not gender roles.

    • genocidicbunny 2 days ago

      It is absolutely also about genders too.

      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.