
All my friends are dying - James_Henry
http://www.josiahzayner.com/2020/04/all-my-friends-are-dying.html
======
dennis_jeeves
There are essentially 2 kinds people, the ones that want to decide what to do
with their lives/bodies. And the other kind are the ones that want the
govt/authorities to 'protect' them from their own stupidity. The latter also
wants the same rule enforced for all people. The vast majority of people are
of the latter kind.

~~~
D13Fd
I think this is overly simplistic. There are a lot of gradations in between.

For example, many people would like to have more control but would also like
the government to let them know what is safe, based on careful studies and
analysis, rather than having to adopt medicine as a hobby.

~~~
dennis_jeeves
>I think this is overly simplistic. There are a lot of gradations in between.

You think I'm not aware of the gradations?

------
cstross
The FDA exists because before those regulations were a thing, there were
scandals such as the Elixir Sulfanilamide poisoning deaths in 1937:

[https://en.wikipedia.org/wiki/Elixir_Sulfanilamide](https://en.wikipedia.org/wiki/Elixir_Sulfanilamide)

... And then tighter regulations were required for testing new medicines,
after incidents such as the Thalidomide birth defects scandal:

[https://en.wikipedia.org/wiki/Thalidomide#Birth_defect_crisi...](https://en.wikipedia.org/wiki/Thalidomide#Birth_defect_crisis)

Having _a_ regulatory framework for the pharmaceutical industry is essential
to public safety. But the framework we currently have, as it has evolved,
isn't fit for purpose any more.

Regulating drug development is a complex problem, and the people best
qualified to supervise the approvals/licensing process are typically folks
who've worked in the industry. But this opens the system up to Regulatory
Capture:

[https://en.wikipedia.org/wiki/Regulatory_capture](https://en.wikipedia.org/wiki/Regulatory_capture)

TLDR is, you get a revolving door between the regulated industry and the
regulators, and the regulators are co-opted into maintaining barriers to entry
that keep insurgents out (thereby providing a profitable oligopoly to their
former -- and usually future -- employers).

There is also a toxic interaction with the WTO-endorsed patent system, which
is w-a-y too complex to get into in this comment but which ensures that new
antibiotics (which we desperately need) are unprofitable but the price of
drugs that are decades out of their original patent coverage (such as insulin)
can be made to spiral profitably by tweaking the intellectual property playing
field.

I'm sorry, but I don't have a simple/easy answer for this: it's a _really_
gnarly problem that will require not only legislation but international treaty
negotiations to mitigate, and simplistic attempts to cut the red tape are
likely to lead to snake oil scandals and, quite possibly, a considerable death
toll, not just new breakthrough treatments.

~~~
hpoe
I appreciate your comment exposing the nuances, and complexity of something
like this rather than the run of the mill <government/business> should just do
<x,y,z> to solve this problem. I think the first step in solving any problem
is establishing the complexity of the issue and agreeing that all parties want
mostly the same things. It seems to often it falls into a limbic system driven
response that goes all the way to one extreme or another.

------
dmschulman
"Most any drug can be made by a company in Asia. Just make a post on Alibaba
and you will get a quote in less than a week. If you want premade, prepackaged
drugs there are many websites that sell from the same manufacturers that are
used by US pharmaceutical companies, same packaging and all. You can find
these sites pretty easily after searching Reddit for a few minutes. I hate
telling people that the biggest thing between them and a self-administered
treatment option is just their own lack of knowledge. That the government
makes it so that those like me with knowledge can’t help them order and
amdinister drugs they want to try."

I agree with the spirit of the article but this paragraph and their
conclusions has me concerned....

------
seibelj
I'm not going to anywhere near the same extreme as this guy but regulation is
indeed awful and suffocating in every industry. This is why tech is the last
bastion of innovation, although with the latest push for regulation the only
innovators will be giant corporations with armies of lawyers who can fight
through all the red tape and avoid the tidal wave of lawsuits related to data,
encryption, anonymous users who post obscene material, and so on.

On the medical side, my prescriber made me visit every 3 months for a 30
minute checkup to get the same drugs for several years. The checkup lasted all
of 5 minutes and billed insurance. She literally just made me visit so she
could insert the same order on the computer. Such a scam. Finally found a
doctor who would prescribe me whatever I wanted during a yearly checkup with
few questions. Such a dumb and wasteful system.

------
devmunchies
> The medical system is failing us

Why are we getting sick in the first place? Are we eating too much? Are we
eating too much garbage? Are we too sedentary?

The medical system is for sick people. I'd rather not get sick in the first
place.

~~~
James_Henry
Most of the examples that Josiah gives of his friends are of genetic
disorders. I too would rather not get sick in the first place, but when you
are sick, you are sick.

~~~
devmunchies
yeah, but if we cut the number in sick then those with genetic disorders could
get more hands-on treatment.

~~~
James_Henry
Maybe? Josiah's post really isn't really about that barrier to better care
though. It is more about "corporate greed", perverse incentives, and barriers
due to regulation.

------
doggodad
_Safety rules are written in blood._ \- Anonymous

"Regulations" exist to prevent unreasonable, dangerous externalities from
being socialized onto the people, like the 1976 swine flu vaccine that killed
a number of people because clinical trials were skipped.

[https://en.wikipedia.org/wiki/1976_swine_flu_outbreak](https://en.wikipedia.org/wiki/1976_swine_flu_outbreak)

------
warning26
This reads like the manifesto for someone hawking colloidal silver, or
whatever the fake-remedy-of-the-day is.

There's a reason those regulations exist.

~~~
James_Henry
What do you think of those real but inaccessibly expensive remedies of the day
that are mentioned?

Also, what do you have any thoughts about regulation that stops experimental
treatment decisions from being made by those who are destined to die anyways?

~~~
codezero
A concern I'd have for the experimental treatments is: what is the bar? Can I
charge someone a ton of money, and pump them full of water? Who has visibility
into the experimental procedures, and whether or not they are just gouging a
dying person to transfer their wealth to a company instead of their family or
friends.

~~~
James_Henry
That is an important point. I would like to think that people would be careful
enough in their search for treatment that this would never happen, but it will
and does happen to some degree.

A lot of the gouging we currently see happens through FDA-approved treatments
that are given monopolies due to regulatory capture.

~~~
ThrowawayR2
> " _I would like to think that people would be careful enough in their search
> for treatment that this would never happen_ "

The laetrile hoax cure for cancer
([https://acsjournals.onlinelibrary.wiley.com/doi/pdf/10.3322/...](https://acsjournals.onlinelibrary.wiley.com/doi/pdf/10.3322/canjclin.31.2.91))
and similar incidents before before and since show that people who are dying
become desperate and are easy prey for people selling snake oil.

~~~
James_Henry
Yes, for sure.

------
onyva
Because what the USA needs is even more deregulation? The only thing Drumpf is
doing is deregulating the USA into a hellish nightmare that will kill
thousands of people.

~~~
dang
Please don't take HN threads into partisan flamewar. It only makes this place
worse.

[https://news.ycombinator.com/newsguidelines.html](https://news.ycombinator.com/newsguidelines.html)

------
spatley
>The purist smile I have ever seen

This person will not even check their spelling let alone their drug formulas.
I would steer clear of any advice to impersonate a PhD and make your own.

~~~
James_Henry
I'm sure that we can find spelling or grammar mistakes in your past comments
or that you have made spelling mistakes before. This is Dr. Zayner's blog post
and not some treatment protocol.

If you want to judge his more serious work, you could take a look at his DIY
peptide vaccine guide:
[https://docs.google.com/document/d/1Xk5S0DwdXy8bVY30PJA07Z_u...](https://docs.google.com/document/d/1Xk5S0DwdXy8bVY30PJA07Z_uWcXr5P6Ejt4cJj3pNBw/edit)

