
Three Women Blinded by Unproven Stem Cell Treatments - daegloe
http://www.npr.org/sections/health-shots/2017/03/15/520118310/3-women-blinded-by-unproven-stem-cell-treatments
======
aresant
The word "treatment" in the headline made me think that this was some kind of
formal study.

But in reality this is literally some Florida crank lab selling a shitty
third-party procedure that takes adult stem sells derived from fat tissue, and
despite the fact that the "safety and effectiveness of this procedure is
unknown, all three patients received injections in both eyes."!!!

To be clear: this was not a test, this was not a study, this was literally
three old ladies being sold on a completely unproven "stem cell" procedure by
a Florida for-profit clinic.

And apparently there are 100s of these clinics being run all over America with
essentially no evidence / clinical trials / etc behind their treatments:

[http://www.npr.org/sections/health-
shots/2016/09/05/49137294...](http://www.npr.org/sections/health-
shots/2016/09/05/491372940/researchers-question-safety-value-of-untested-stem-
cell-treatments)

I remain stunned at the things that are heavily regulated in America vs not.

~~~
ptero
As a personal data point: about 15 years ago a close relative of mine (in his
90s) was going blind (I think from MD, but not 100% sure) with no cure, at
least at the time. He was fully self sufficient and an avid reader his whole
life and knew that in 6 months his walks with grandkids, reading and in
general life as he knew it would be over. He died of an acute infection (or
virus) before he went blind, but I am sure that given an option with outcomes
of death at 50% and keeping vision at 50% he would take it (I would, too).

Regulating non-approved medical treatments out of existence might look
appealing, but IMO we need to allow informed, rational people to choose
unapproved treatments where no approved one exists. Much better to have full
disclosure and informed consent (FDA would not approve a treatment with 50%
death/health outcome, but some people would gladly take it). My 2c.

~~~
hannob
> but I am sure that given an option with outcomes of death at 50% and keeping
> vision at 50% he would take it (I would, too).

Sure. But this has nothing to do with the scenario of an unproven stem cell
therapy. There the chances are 99,99999% vs. 0.00001%.

> Regulating non-approved medical treatments out of existence might look
> appealing, but IMO we need to allow informed, rational people to choose
> unapproved treatments where no approved one exists.

This is a really bad idea, and your comment ideally shows why that's the case.
You're selling people the idea that they have something like a 50/50 chance.
But that's a complete illusion. Even 10/90 is an illusion. The chances of a
completely unproven therapy to do any good are practically zero.

It's different if you have early stage interventions that have some weak
evidence behind them. But there are already mechanisms to cover that. The
right thing to handle that is to add people to a study.

~~~
stagbeetle
> _Sure. But this has nothing to do with the scenario of an unproven stem cell
> therapy. There the chances are 99,99999% vs. 0.00001%._

> _This is a really bad idea, and your comment ideally shows why that 's the
> case. You're selling people the idea that they have something like a 50/50
> chance. But that's a complete illusion. Even 10/90 is an illusion. The
> chances of a completely unproven therapy to do any good are practically
> zero._

The 50/50 is for sake of practicality, it's not the main point.

The point is some people would take unproven treatments if it meant they had
_any_ chance to improve their quality of life. See: The man who's having his
head transplanted.

I've been in this situation before where all approved methods had failed me. I
was extremely desperate to find something that would help, so I was vulnerable
to con men (and they made a killing off me from "homeopathic remedies"), but
when I settled down with a clear and rational head, I decided that I would be
worse off if I continued living in my pathetic state.

So, I did my due diligence and interviewed every treatment that looked
promising (after doing research on my disease). Even though they were all "out
there" I found one I was confident in and signed up.

There was no guarantee I was going to be better, only that there'd be a $60k
hole in my pocket. To make a long story short, it improved my condition to a
manageable state and I'm very happy with the results.

I've never been a proponent of restriction, only proper education. If someone
is properly educated on the possible harms and how to avoid them, then why
shouldn't they be allowed to take a course they believe would benefit them
(without hurting anyone else)?

The problem that's being discussed here, though, is that the clinic had a
power imbalance (partly due to lack of proper education on the subject) and
preyed against these three women. Perhaps if they were informed properly (due
to regulation on full disclosure) they might have been better off.

~~~
sdenton4
In your view, though, blame will always lie elsewhere. It's either with the
uneducated blind women, or, if you're a generous soul, the society that failed
to properly educate them.

Somehow the back alley quack with the completely unrested remedy evades all
blame for their actions.

Quackery has a supply side and a demand side. The supply side is easier to
deal with. It's a smaller target. Furthermore, it's in the interest of the
quack to produce misinformation that your education programs will be in
competition with.

~~~
stagbeetle
> _In your view, though, blame will always lie elsewhere._

This is contrary to what I said, but I wasn't clear. Let me elaborate:

> _Perhaps if they were informed properly (due to regulation on full
> disclosure) they might have been better off._

What statements the clinic puts out _should_ be regulated, just like
supplements. You are not allowed to say some things, but required to say other
things.

> _It 's either with the uneducated blind women, or, if you're a generous
> soul, the society that failed to properly educate them._

The blind women is _partly_ to blame (though dependent on her ability to
research -- an 90 y/o alzheimer's patient is much much much less to blame than
a 25 y/o office worker) for being taken advantage of. The clinic, however,
holds the majority of the blame for practicing deceptive procedures and
misinforming (if they indeed had misinformed, I only skimmed the article).

> _Quackery has a supply side and a demand side. The supply side is easier to
> deal with. It 's a smaller target._

This is true, but it does not bring about the best outcomes. Proper medical
procedures (as accepted and enforced by regulatory agencies) are most of the
time years behind in implementing new and better techniques (or not
incentivized to, see: europe vs. american models of health treatment).

You hurt: the people to whom accepted practices do not offer relief, the
research of "unethical" procedures that could otherwise save lives if there
was no stigma (again, see: head transplant), and people's freedom of choice.

------
kobeya
Somebody has to be first to get a treatment. You don't really know whether it
will work until you try it. Also mentioned in the article are the cases where
treatments worked as they were supposed to or better.

The headline is a bit misleading because the 3 ladies in question were already
going blind. The treatment was supposed to reverse the disease but failed. You
could write the same headline about other treatments that are considered safe
enough to try: "3 patients killed by chemotherapy treatments that failed to
eliminate their cancer."

~~~
simonh
I don't trust a journalist to evaluate whether this treatment was valid or
not. I have more trust in the several stem cell therapy experts who wrote
detailed technical takedowns of the failed treatment and contrasted it with a
much better one.

~~~
csydas
Are you referring to another instance where this happened or to something in
the article where you felt that the journalist reporting was making an
assertion?

I cannot identify any statement or section within the article where the
journalist themselves makes a claim or assertion as to the validity of the
treatment, but instead just numerous citations and reports from other agencies
and persons who are qualified to comment on it.

Can you please clarify what you are discussing?

------
ipsum2
This was also covered by BBC, and had a few more details.
[http://www.bbc.co.uk/programmes/p04w86gz](http://www.bbc.co.uk/programmes/p04w86gz)

Off the top of my head:

\- One of the researchers had his medical license revoked

\- Some patients paid up to $20,000 for the treatment.

\- Very few, if any, patients had any improvement. Many had decreased eyesight
after the treatment.

------
timthelion
Anyone else notice that they were injected in BOTH EYES at once. That is
totally non-standard for non-proven eye therapies. Even many run of the mill
treatments treat one eye first to make sure there isn't some kind of bad
reaction.

------
RangerScience
Is there any indication that their resulting blindess was the result of the
stem cells, and not as a result of the delivery mechanism?

------
bobbles
I know its not good news, but it is worth mentioning that the treatment was
for an illness which causes blindness, and was injected _into_ their eyes.

It's not like some unrelated treatment was used and caused them to go blind.

~~~
senectus1
Skim read it and it looks like it was a terribly incompetent attempt. They
used STEM cells derived from a different source as to the original claims
source, it was to treat a different condition and to top that off the original
claim that they based their therapy on was very dubious...

These women need to sue for a quackery and shut them down.

------
phkahler
>> Each woman got cells injected into both eyes.

Gross incompetence. Why would you ever do both at the same time? Had they done
one first, these people would at least have sight in one eye and know not to
mess with it.

------
jacquesm
I read about this earlier today in some regular news publication. It seems the
word 'treatment' is not applicable here.

The bad thing is that news items like this will likely cause some damage to
the field of stem cell treatments and related research.

------
thedailymail
BBC Worldwide radio has a 30-minute investigation into a different clinic,
which has also been damaging peoples' vision by injecting "stem cells" into
their eyes as part of a "clinical study" which they have to pay $20K to join.
No malpractice insurance and one of the two founders had previously
surrendered his medical license.

For me, this is where the arguments based on the idea that everyone should be
free to decide for themselves and take responsibility for their own decisions
really falls apart. A market that is unregulated w.r.t adventurism is a market
that is unprotected against fraud.

[http://www.bbc.co.uk/programmes/p04w86gz](http://www.bbc.co.uk/programmes/p04w86gz)

------
mrfusion
I actually see this as a case of over regulation. I think if it were easier to
get legitimate experimental treatments (with some sensible regulation) these
kind of shops wouldn't exist and these women wouldn't have resorted to this.

It's the same concept as the argument for safe and legal abortions.

~~~
maxxxxx
How would this sensible regulation look like?

------
amelius
I just hope the public will not interpret this news as "stem cells = snake
oil".

~~~
scott_s
I have the opposite fear. Because there is enormous potential in treatments
from stem cells, I fear more quacks will exploit this potential in pushing
scam, for-pay treatments using the thin veneer of stem cells to lure people
in. For more, see [http://theness.com/neurologicablog/index.php/alzheimers-
and-...](http://theness.com/neurologicablog/index.php/alzheimers-and-stem-
cells/) and [http://theness.com/neurologicablog/index.php/more-stem-
cell-...](http://theness.com/neurologicablog/index.php/more-stem-cell-
quackery/)

------
BrailleHunting
This is what happens with a perverse, for-profit medical-industrial complex:
snake oil.

Also worth mentioning is the fake "emergency rooms" and "urgent care" fly-by-
night shops which have sprung up on the side of roads in much of the Southern
US. People will inevitably die because of the confusion and misrepresentation
caused by these shoddy scammers.

~~~
lawless123
> "emergency rooms" and "urgent care" fly-by-night shops which have sprung up
> on the side of roads in much of the Southern US.

What are these?

~~~
djsumdog
I too am curious about this. I can't find anything on "fake emergency rooms."

I wonder if he's talking about those homeless health clinics on wheels. I
always thought that they were staffed by volunteer or non-profit funded
Doctors, Nurse Practitioners, etc.

~~~
shiftpgdn
There are probably 2-3 of them in any major affluent suburb in the south. They
are typically built into a strip center or on a pad site near one (because of
the cheap land.) Most of them are emergency rooms by the letter of the law
only meaning they don't have an operating theater, mri/ct machines, huge
amounts of trained staff. They typically have a few stabilization tools and a
nurse practitioner on staff.

Anecdotally I was sent to one by my primary care doctor because she thought I
was having a heart attack as a result of month long strep/sinus infection.
They gave me a bag of saline and charged me $1000 (insurance ER rate) for the
privilege. I think these places exist only to bilk parents with crying
children in the middle of the night and people who don't know any better.

------
Pica_soO
What happened to the woman who tried those experimental telomere prolonging
treatment?

