But the FDA isn't your parent, getting diagnoses are hard, and it's up to you and your doctor to decide what treatment is best, not the FDAs.
The FDA is just a big organization that regulates advertising, and what can be prescribed. Every drug has risks, and the only way to ensure the FDA doesn't approve drugs that will hurt people is to make sure they never approve any drugs.
Not allow Hydrocortisone based ointments over the counter, and to include two week addiction warning labels.
Or...
I'd like them to get out of drug regulation at all so people aren't engendered with a false sense of safety and are allowed to make up their own minds without a rent seeking gatekeeper (doctors).
That said, I think, as you suggest, my problems may be more with the medical system and authority in general.
Those seem to be contradictory things. I think you just want the doctor who (apparently) misled you to be punished. Which is reasonable and what malpractice suits are for. The FDA's job isn't to review every prescription written by every doctor.
FYI - There are other side effects from long-term use of steroidal ointments.
That said, topical steroids beyond 1% hydrocortisone are powerful drugs that can have long-term side effects (thinning of skin). But on the flip-side, there are often no alternatives.
How would you design an ethical experiment to get said data?
Particularly considering the timespans involved.
Please review the following case study(s).
https://www.medicaljournals.se/acta/download/10.2340/0001555...
In some of the children it took over two years, but every child was left with normal skin or mildly itchy skin in their inner elbows or behind their knees.
Nothing like the dehibilitating steroid withdrawal these children and my son went through.
And of course you can ethically confirm this data through a clinical trial. Enroll kids with specific diagnoses, treat half of them with steroids, half without and compare outcomes.
I'm not saying TSW doesn't exist, but the evidence for it doesn't look very conclusive.
That's why they literally have that label on everything you buy, and warning about using it on your own, either in the short- or long-term, depending on the specific medicine.
Just because people assume it's safe, doesn't mean it's safe, and is nobody's fault but their own for not reading the actual instructions and safety labels.
It's medicine, for Christ's sake, even if relatively benign looking. It has the intent on changing something about your body. Why do people think you can just go to the corner store and take whatever you want without actually thinking about it?
1) pressure from patients (and sometimes the doctor themselves, too). What is wrong with drugs? I mean, we can all agree that there's a minority in society that doesn't see the problem here. There are plenty of medical people in that minority.
2) pain medication "cures" everything (cheaply!). Can't diagnose what's wrong? Opioids cure it! Not really sure if anything is wrong at all? Opioids make patient happy! Patient scared of treatment? Opioids cure the problem without the treatment! Patient can't pay for real treatment? Opioids cure it!
I'm sorry to hear about your son, though.
When my daughter was very young her doctors tried to give her an oral antibiotic for a little infected sore she had on her finger. At the time I was much more of a "just do what the doctors say!" type, but luckily my wife insisted we handle it on our own with topical antibiotics instead. Now, knowing more about all the harms caused by antibiotics I'm extremely grateful we didn't just slavishly follow the doctors' advice. In seriousness, good job looking out for your son.
Anyone who has had to deal with doctors regularly knows how little they should be trusted. There are those who will diagnose any chronic health issue as anxiety, those that prescribe life-destroying drugs for a scratch, those that dismiss patients with serious medical conditions as drug-seeking or "being whiny". That's only worsened by the widespread arrogance in the profession that makes them speak with unwavering confidence about things there is little certainty about. Good patient care can only be achieved when the family is well informed and ready to get involved and push back.
If you go on any disability forum, you'll find hundreds of testimonies to that effect.
Once you find someone like that, you're set. Not that one has to blindly follow that person, but it lifts a lot of stress off your head.
Edit: I am not from USA
Chiropractic is bunk. Audiology is a tool of price gouging hearing aid cartels. Every doctor that played along with the Sackler playbook directly perpetuated the opioid crisis. Optometrists are a front for cartels of glasses and lens manufacturers.
Much of what is qualified as medicine is exploitative corporate fuckery.
Toxic incentives abound, but god forbid we question the integrity of the system.
There's a lot wrong with the institutional role of "doctor" in the US. Part of it is that there aren't enough of them. Part is that the institution is granted a veneer of authority over things it has no claim to (see: psychology.) Part is corporate pharmaceutical corruption and bad incentives.
There are many situations where self directed research is going to be much better than what you'll get from a brief visit with an overworked, irritated, often arrogant and egotistical doctor without intimate knowledge of your unique medical situation. It's infuriating to get those half-assed "best guess" diagnoses or prescriptions.
I would trust an earnest high schooler with Google over a doctor from, say, 1920, with almost any medical situation except actual surgery, and maybe not then. I trust my own understanding of scientific evidence and research over doctors from 1970 or maybe even later.
How much time is needed by modern, educated doctors to exceed the quality of advice gained by self directed, appropriately conducted research, using the best of what the internet has to offer?
Obviously the doctor's advice will exceed what the patient can accomplish on their own, given sufficient time. Absent sufficient time, a person spending 4 weeks researching online could, and probably frequently does, exceed the domain specific knowledge and assessment by a doctor making a 5 minute "best effort. "
It shouldn't be combative, and doctors should be willing to investigate information brought by patients from legitimate resources. The gap between "civilian" and doctors available information and education is not nearly as great as it once was.
Dismissing the situation as "don't believe what you read on the internet" is a shallow and ignorant stance. We have the sum total of human knowledge available to us via Wikipedia, specialist sites, forums, scihub,arxiv, and so on. Everything, including the good stuff, is online.
People can and do use rational, scientific thinking to engage with that information, and in that situation, the doctor's 12 years of education only means something if they can spend an appropriate amount of time acquiring evidence and information from the patient. There's not enough of them, so unless a situation is serious and demands immediate attention, doctors often won't be able to provide sufficient time to make their expertise relevant.
Now if you do your own research, and use that to improve your interaction with your doctor that is good. But replacing medical professionals with google searches can potentially be dangerous, at least for some conditions.
Someone with MS might have their doctor recommend against being vaccinated. Someone else with MS might be fine, but their two stories could lead people to radically different conclusions, when it's the unique particulars that validate the judgment of the doctors in question.
We need a better culture of scientific discourse in public, allowing for nuanced and depth without the pitfalls of fallacious thinking.
Hyperpartisan and sensational media amplify the feedback loop in ragebait meme propagation. Maybe there's a mathematical tool or theory in graphs or networking that could help identify and shut down the spread of argument and combative discourse - not particular ideas, but particular forms. Seemingly opposite facts and opinions can be true in parallel and it's dangerous to attempt to either validate or censor one side or the other.
The latest crusade on misinformation and "anti vax" views is an example of how spectacularly flawed tools of censorship and rightthink can be.
It's been rough losing faith in what is basically not just the medical establishment, but kinda also society writ large.
I guess at least I can take comfort in the self confidence gained through experience, but now all I see is in question.
Hopefully I can aim my new found confidence at solving some of the issues that now seem obvious to me.
If I'm the doctor, the risk/reward for me is to overdo antibiotics and make sure to kill infections with them, if the parent has come so far as to come see me. It's risky to say "use an ointment" if there's even a slim chance it doesn't work.
Even the background level of 410ppm CO2 which a child can never escape is extremely unnatural.
In this case he was misdiagnosed as having Eczema, and put on topical steroids from about 2 months old.
See
http://www.red-skin-syndrome.com/ https://www.itsan.org/
And my favorite, a video that finally opened my eyes on the issue.
https://m.youtube.com/watch?v=PpW4VV2bsD8&t=19s
My two year old son has been steroid free for just about three months now and is finally looking like a healthy young boy.
We're both very happy and very angry. Had we not sought out our own solution we'd have him on yet stronger steroids today as that is the 'standard of care'.
From my perspective, it's hard to put any faith in the FDA at all.