
Cancer Treatment: China Mulls Looser Experimental Therapy Rules - prostoalex
https://www.bloomberg.com/news/features/2019-12-10/cancer-treatment-china-mulls-looser-experimental-therapy-rules
======
rb808
It always seemed silly that people with just months to live weren't allowed to
try new medications in case they were dangerous. Surely you should be able to
try anything.

One protection though is that desperate people will pay for snake oil so maybe
it must be free or cheap.

~~~
Symmetry
It's a bit like the trolley problem. Allowing someone medicine that might kill
them feels like pushing someone onto the tracks but not allowing it feels like
inaction even if in the course of events someone will die.

Also, the agency that is supposed to prevent medicine from killing people
understandably gets blamed if medicine kills people. But they aren't doctors
so it isn't them that gets blamed if lack of medicine kills someone.

~~~
thaumasiotes
> It's a bit like the trolley problem. Allowing someone medicine that might
> kill them feels like pushing someone onto the tracks

Huh? Surely allowing someone to take medicine that might kill them feels like
letting someone jump onto the tracks. The analogue of pushing someone onto the
tracks would be forcing them to take the medicine.

~~~
Symmetry
That's how I would think of it but if you work in a department under a legal
framework where drugs are illegal by default and you have to do certain
paperwork to make them legal it will tend to feel very different.

------
mrosett
I'm a strong advocate for improving access to experimental cancer therapies,
particularly because a drug I got access to pre-approval may have saved my
life. Cancer patients should have easier access to novel therapies, and novel
therapies should be easier to bring to market. There's a tradeoff between
ensuring patient safety on one hand and giving patients access the treatments
on the other, and I don't think we're at the right point on that spectrum.

On the other hand, I don't particularly trust China to land at my preferred
point on that spectrum given a penchant for questionable medical ethics.
Ultimately, though, US patients may benefit from Chinese aggressiveness.

------
hhas01
What could go wrong.

[https://sciencebasedmedicine.org/scientific-fraud-in-
china/](https://sciencebasedmedicine.org/scientific-fraud-in-china/)

~~~
Melting_Harps
While you have a valid point, and one can point at the Human Right violations
in Tibet, the Ugyhur camps, and Hong Kong to point and why this is all an
incredibly horrid idea. I do think that China being the trailblazer in Biotech
will and continue to happen, the 'Crispr babies' is an example of what should
of happened in the Public domain, and now it will likely be kept indefinitely
in the realms of academia and other government funded labs, we need this
advancement in the Human Gene editing, Mars colonization is the most glaring
one, but instead it seems that the cost of that is your career as seen with He
Jiankui.

He opened pandora's box, their is no going back, and for some of us in the
Biohacker community we see this open, 'looser' experimentation as progress
from the corrupt Western model; most of whom were actually commending Dr.
Jiankui for his efforts in private, and then condemning him in public when
they realized that their funding would be cut if he took his side.

As a biologist and a (former?) member of the scientific community, I see the
potential for good outweighing the bad here, if only we set some Humane
controls in place: as in the subject(s) must be willing and consenting and
doing so of their own volition.

If this doesn't make any person in the Health Sciences have a grin ear to ear
they need to reconsider why they even bother doing it at all:

> After spending three weeks in the hospital in May — during which white blood
> cells were removed from his body, genetically engineered, and then infused
> back in — an analysis of Zhang’s bone marrow in June showed his body was
> clear of cancer.

I can't wait to see this documentary, and not just because it has our
Biohacker all-stars in it, but what it can do if we collectively embrace this
as a reality:

[https://www.youtube.com/watch?v=Wyv3Ibxw-a0](https://www.youtube.com/watch?v=Wyv3Ibxw-a0)

~~~
hhas01
“Biohacker community”

Sorry, but you appear to have gotten Religion in your science.

Not that I give a crap as long as it’s only your funeral, but like all
evangelicals you never can just stop there.

“corrupt Western model”

Paranoid and racist self-serving bollocks. There’s science and scientists, and
then there’s fantasy-prone punks with delusions of grandeur. Try killing a
patient, then get back to us.

~~~
Melting_Harps
> Sorry, but you appear to have gotten Religion in your science.

I'm not drawing parallels between the two as I'm personally not Religious and
despise the affects dogmatic faith has had on Science (think stem cell
research ban in the US), but in Truth the two were once seen as the same;
Newtonian physics and mechanics was after all based and conjured from his
fervent belief in Christianity and its application on understanding the
Natural World.

> Paranoid and racist self-serving bollocks. There’s science and scientists,
> and then there’s fantasy-prone punks with delusions of grandeur. Try killing
> a patient, then get back to us.

I'm a Westerner born of Western parents and raised and lived my entire life in
the Western World, in the US and Europe respectively. I'm not sure what racism
has to do with the corrupt profit models of Bayer/Novartis/Dupont et al, who
quite honestly are just doing the same evil stuff they did during WWII in
their pursuit of profit at all costs--when I was in my WESTERN University
studying Biology I saw how Eli Lilly kicked off a Cardiologist off the FDA
panel because he refused to acquiesce that their product didn't prove it
wasn't harmful:

[https://www.reuters.com/article/congress-prasugrel-
idUST2032...](https://www.reuters.com/article/congress-prasugrel-
idUST20321520090227)

Years later this happened with the same corp who pulled their FDA APPROVED
drug for not meeting its targets:

[https://investor.lilly.com/news-releases/news-release-
detail...](https://investor.lilly.com/news-releases/news-release-
details/lilly-announces-withdrawal-xigrisr-following-recent-clinical)

I can go on, but I actually studied this and unlike many of you I had undergo
a lot financial hardships to work in this Industry, only to see this level of
corruption as the norm, not the exception; so I enough to know that the FDA
system is broken: its interest are not aligned with the welfare of the General
Public and it never was meant to. Its their to prevent others from taking
Market Share from the established Industry players who lobby the government to
enact legislation and dismiss their cases when they don't comply by their own
imposed Laws and get a bunch of people sick, poisoned or killed.

At least if what this article is alluding to is happening in China,
specifically with these terminal cancer patients, they are given the choice
and opportunity to explore all options they see fit; which cam include
experimental drugs so we can in turn garner more insight and learn from these
processes if its documented and published in medical/health journals.

Death is a certain variable in the Health Sciences, that's why its so
important, and you needed to understand that in your Freshman year of
undergrad (or sooner) to get why any of this matters.

Have you ever been in an ER or Cancer-ward? People die everyday in Hospitals
because they are denied access to research level treatment(s) as an option due
to legal matters, not scientific ones, this isn't the 'punk' view, this the
root for why its broken: let people decide what they should do with their
bodies, retaining some level of agency into death is least we can do for those
hapless souls. Many would forfeit doing so anyway, I should know: my mother is
an example of just that, luckily she is healthy now, but radiation and
chemotherapy is a barbaric relic akin to that of leeches when things like
CAR-T have been a norm before I was even born.

The only delusions here are your misplaced faith on the aforementioned system
despite all the evidence to why you should question its validity.

~~~
hhas01
>> Sorry, but you appear to have gotten Religion in your science.

> I'm not drawing parallels between the two as I'm personally not Religious

And if I say “It’s just a metaphor, dude”, your reply is…?

..

Here is your problem:

Having observed that existing systems are corrupt, you devoutly believe that
_your_ system will not be. You may be super smart (as you appear to be) but,
honestly, you’re kinda naive and just a little bit dumb. I’m not telling you
this to hurt you [mods take note], I’m telling you this to _help_ you: to help
you _avoid_ hurting yourself, or—worse—others.

You’re just as fallible and foolish and myopic [metaphor!] as everyone, and
here you’re telling us you’re on a messianic mission from DNA Jesus. If you
aren’t very, VERY careful, you will make yourself Dangerous too. Look at
Pauling or Montagnier—even more smart and successful than you, and yet they
still went utterly off the rails at the end. How many have suffered and died
from being sucked into the whole vast all-absorbing AltMeb web of delusions
and deceits, to which Pauling’s Vitamin C quackery is just one of a myriad of
gateway drugs?

Protip for Very Smart People: _Don’t_ be a Pauling.

..

To answer your question “Have you ever been in an ER or Cancer-ward?”, yes
(for various ills) and no (family members got post-surgery mop-up chemo as
out-patients). To say “radiation and chemotherapy is a barbaric relic” is
grossly naive and ignorant of history: they are an _improvement_ over what
went before, just as modern BCS is an improvement over Halstead’s radical
mastectomies for everyone, which was still an immeasurable improvement over
every person who got breast cancer rotting to death in agony and darkness.
Modern chemo has made great improvements since its origins, both in targeting
and tolerance. Radiation? Good lord, until the middle of last century
grandstanders and grifters were marketing radioactives as _beauty products_!
All lab- and field-proven tools with known costs and benefits, constantly
improved and refined.

Once again, you do an atrocious disservice to both practitioners and patients
who have sweated and bled to get us even this far. And yes, ACT is bringing in
a whole new toolset, and should it be so successful as to obsolete all its
predecessors then that’ll be a good thing indeed. But you don’t get there
cutting corners: you get there by _proving_ your new therapy significantly
improves on the current standard of care. This has nothing to do with the
economics of healthcare, which Dog knows in the US is broken AF (and you
should consider exactly who benefits by keeping it broken like that).

This is about raw comparative numbers: lives saved, lives lost, survival times
between the two, and quality of life across it. You don’t get that by being
the Hero who dashes in to save everyone; you get it by doing the work, doing
the math, and _knowing_ that you will not save everyone who is sick now, but
if you do it right you will save the countless more who fall sick in the years
and centuries to come.

You seriously need to step back and wrap a choke leash round that big ego of
yours. Your motivation is admirable; your sense of professional and personal
liability is not.

..

My turn to ask you: Have you ever killed a patient?

Because I have.

Breech birth. Done it plenty times before. Get in there; turn, pull, wallop.
Sorted.

Bad one. Start panicking. Tunnel vision (another metaphor). Forgot procedures,
training, basic (if there is such a thing) common sense. Should’ve stopped,
got help. Did not. Kept going.

Boss found out what’s happening; stepped in, got babby out.

But by then, I’d already torn a hole in mom’s uterus.

Baby lived. Mom bled out.

30 years on and I can still see her lying dead knowing it was _me_ who had
done it.

..

I was lucky in that Mom was “only” a Cheviot ewe, not a member of _Homo
Sapiens_. I got yelled at, and rightly so, but it’s not like I was up on
charges. Far from my only fuckup in life, but one with an early and perhaps
fortunate lesson. Now I can be sanguine and joke: Many a fluffy puppy dodged a
bullet the day I crashed and burned out of vet pre-med.

Today I write software (Ground-Breaking! Revolutionary! Industry-Changing! no
less) and the worst harm I can do is trigger a multi-million dollar product
recall and some panic on the shelves. But if there’s a coda to my slow but
eventual ability to learn from my own long and embarrassing narrative of total
personal balls-ups, it’s that my last few braincells work not to be the Hero
of the Day but to make bloody well sure my code has the appropriate checks and
feedbacks and fail-safes up the wazoo. So that when it blows up (and it will
and does blow up, like every complex imperfect system that works for a living
out in the real world) that damage is limited, contained, admitted,
acknowleged, and learned from.

..

Which is much the same reasons modern research medicine has grown its own
checks and balances. Because who in their right mind wants their ego writing
the story ending in “killed a whole lot of people we meant to save instead”.
So ponder that as you evolve your own narrative, and please remember _you are
not alone_ (in every sense, not just metaphor).

~~~
Melting_Harps
> Especially nerds, who—let’s admit it—are amongst the world’s worst at owning
> their own screwups. Honestly, if some fiery language is the worst those
> muppets have to deal with, they don’t know how lucky they are.

I was about to just look over this, but then this gave me a chuckle as I agree
with you.

To answer your question, no, because I never went into Medicine, I was in
diagnostics. I find Medicine, especially in the West, to be a costly and
bureaucratic nightmare imposed over what I believe is at odds with a Person's
Health--be it mental, or physical. None of my work did anything but confirm or
deny a physicians inquiry, and thus I can operate in an unbiased and neutral
position: this malady does or doesn't exist in the host, what you do with that
information is out of my control.

And it is that vein that I operate from, if successful we could garner insight
from these medical journals from China in order to re-create their work and
bring it into a domain beyond the Medical Industrial Complex and offer a 3rd
choice to those who see fit to explore those options. Will people get hurt or
killed in the process, sure, of course they will, but people die of sports
injuries all the time and yet Nike is never held liable for pre-mature torn
ligaments or spine injuries, so why should this be any different? Humans have
agency, and free will; that should include experimenting on themselves and
have to deal with the consequences therein should it not work out, ideally
they publish these findings to help others not make that mistake.

People can and will experiment on themselves, at least if this does take place
you can accelerate the process to refine it in such a way that the Human
Species can al benefit, rather than just the affluent Westerner you seem to be
touting as the apex of all Humans. Western Medicine is broken, if only because
it neglects the importance of preventative medicine, very little is understood
about how something so critical like the microbiome in your stomach effects
everything from neurological disorders to immunological responses, and yet
many cultures, western and eastern alike, advocate for eating fermented foods
to do so, others promote fasting as religious practices to reset and pause or
correct the rate of metabolism etc... And yet, Western medicine, which is to
say allopathic medicine dismisses that entirely for the most part and
advocates for furthering its pharmacologic dystopia despite the very obvious
crimes it has enabled--Purdue's opioid epidemic is just one of the very many
in the US' short medical History.

Your argument is very circular, and your rhetoric meandering, but I understand
what you are saying; I just think you are applying 20th century thinking to
21st Century mode of operation. Its akin to saying that LibGen is putting the
public in danger because it makes all the scientific journals at the hands of
the unwashed masses who cannot grasp or come to understand what those of us
who have spent time in academia know.

Its elitist thinking, that quite frankly turned me off entirely to the formal
Education process: despite getting honours' and letters of recommendation
throughout my Undergrad to encourage me to further my studies, I don't even
like looking at my 'accomplishments' from that period in a positive light, as
I see it as an unrecoverable loss of time, ambition and motivation. I
personally feel I could have done so much more with that time.

Lastly, as this will have to be my last response to this as it has taken far
too much of my time already: check out a series on Netflix called UnNatural
Selection [1], it highlights the Biohacker community and how it operates
(footage from Biohack the World conference is seen), but also shows that the
need for traditional medicine still exists and will continue to be as well,
but it also underpins the personal, financial and emotional costs it has on
the People who suffer from it.

Its an awesome 4 episode series, if you have time you can also look at Dr.
Zayner's 'brazen' attempt [2] to be the first to alter his entire microbiome,
all while being called a fool and reckless endangerment to public safety--and
now not only is he much better, but I personally witnessed as the narrative of
probiotic use become extremely more prevalent in that time-frame in US MSM and
the amount of Kombucha/Kefer companies has followed in suit.

Just imagine what we as Health Scientists can do to the Human Species' and by
extension the Human Condition if we did this on many facets?

1:
[https://www.netflix.com/title/80208910](https://www.netflix.com/title/80208910)

2: [https://www.theverge.com/2016/5/4/11581994/fmt-fecal-
matter-...](https://www.theverge.com/2016/5/4/11581994/fmt-fecal-matter-
transplant-josiah-zayner-microbiome-ibs-c-diff)

------
zupreme
Human beings have the innate right to manage their own bodies.

For any government or doctor to dictate to the individual adult citizen what
he/she can or cannot put into or onto their bodies, is tyranny.

Enforce the laws against real crime. Leave sick people, one of whom will
inevitably stumble across something new which works (eventually benefiting
all) alone.

Doctors have, seemingly, forgotten that many of the innovators who they study
and revere for their breakthroughs, had no university degrees.

Arrogance and protectionism - all the while stifling innovation.

It is time for this unfortunate cycle to end.

~~~
throwaway_tech
>For any government or doctor to dictate to the individual adult citizen what
he/she can or cannot put into or onto their bodies, is tyranny.

Interesting...I worked on a case once where a pregnant woman with HIV/AIDs
refused medication which would ensure the baby was born without HIV. The Court
ordered the treatments against the woman's wishes/will...is that really
tyranny?

~~~
overcast
Does the child count as their own body though? That sounds like it falls under
government protection for child endangerment.

~~~
zdragnar
By that reasoning, abortion would also be illegal excepting maybe self defense
(aka the pregnancy endagers the mother's life).

I'm not weighing in either way, just pointing out that getting a rational,
logical consensus on why some things can and cannot be done is next to
impossible. Another example- us states where murder of a pregnant woman can be
charged as two murders, yet abortion remains legal.

Trying to have it both ways often ends up meaning abandoning a pretense of
logic.

~~~
overcast
Abortion is a giant debate, and there should be SOME type of regulation as to
how far you can go along with a pregnancy before you decide to just kill it.
But this is about a human, intentionally giving another human HIV.
Intentionally giving anyone HIV should be against the law.

~~~
zdragnar
> Intentionally giving anyone HIV should be against the law.

If you consider a pregnant mother transferring HIV to an in-utero fetus as a
human giving another human HIV, then to be logically consistent you must
consider abortion as one human killing another. The size of the debate is
irrelevant. Whether you carve out exceptions is a different story (I.e. self
defense from health complications) but that is simply a justification for the
killing, not changing the act itself.

Edit: To complicate matters more, if a parent passing on HIV were illegal,
should people with Down syndrome be legally allowed to have children? After
all, there is a very significant chance the parents would "give" the child the
syndrome as well.

