
Biotech CEO claims she is the first to undergo gene therapy to reverse aging - bussiere
http://www.technologyreview.com/news/542371/a-tale-of-do-it-yourself-gene-therapy/
======
erikgaas
One thing to be cognizant about is that cancer is really a disease caused by
the reverse aging of particular cells. If you make a cell think it is too
young it is going to become invasive. We don't normally think of embryonic
development requiring invasive behavior of cells, but that is certainly the
case. Take a look at the development of the cerebral cortex and how cells must
travel through other layers to reach their destination. It appears that they
are targeting telomerase which is very interesting and parallels cancer where
its over-expression is used often as a marker. But then again telomerase
under-expression can occur in early-stage cancer and is thought to contribute
to genome instability/mutation to affect other genes before it is eventually
over-expressed. So this kind of experiment is really exciting and will almost
certainly give us insight into many different medical fields. I just hope that
her experiment winds up on the preventative side of cancer rather than the
causative one.

~~~
narrator
No, cancer is caused by DNA damage. The longer a cell lives, the more damage
it gathers, so if you make a cell immortal and the mechanisms the body has for
killing malfunctioning cells or repairing damage to damaged DNA is disabled,
weakened, or overwhelmed, then you get cancer.

~~~
erikgaas
Yes those are all important parts in the development of cancer. But you have
to take into account the tools that cancer has to take advantage of when it
comes to invasiveness and proliferation. DNA instability is the root cause
which results in incorrect signalling, cell cycle progression, cell
morphology, and immune system evasion. But take angiogenesis, an extremely
important tool for a developing embryo, and how ubiquitous it is for a growing
tumor. But we can go farther and consider the factors that influence the
guidance of a cell during development. Accutane or Isotretinoin is very
similar in structure to retinoic acid, a guidance molecule in the posterior
embryo. Consequently isotretinoin causes birth defects. Interestingly
isoretinoin has also been implicated as an anti-cancer treatment. Thalidomide,
which also interrupts proper development has also been used as an anti-cancer
treatment. My point isn't to dispute the importance of DNA damage and gene
expression profile changes, but rather to emphasize the importance of
metastasis and its apparent parallels with embryonic development since
metastasis is the main reason (sans leukemias) why cancer has such a high
lethality.

------
JackuB
Publicity stunt instead of scientific paper in reviewed journal, "we don't
care about FDA approval" attitude, undisclosed location in latin America -
sounds totally credible.

~~~
pippy
After the FDA started pressuring 23andme in to not giving data relating to
diseases to customers, I lost of respect for them in the genetic arena.
Customers have a right to know what's in their bodies. At the moment 23andme
is only cleared to give out data from a single disease, which is pathetic.
Clearing the way for more genetic diseases will likely be a bureaucratic
nightmare and would harm more people in the long run.

Given how conservative the FDA is in allowing companies to inform customers
what's in their own bodies, it's unlikely companies will get any form of
approval for modification.

~~~
JackuB
I'm not familiar with FDA that much (I live in EU) and I believe it isn't
anywhere near perfect, but you _want_ to be conservative when it comes to
public health. Look at case of Thalidomide from 50s
[https://en.m.wikipedia.org/wiki/Thalidomide](https://en.m.wikipedia.org/wiki/Thalidomide)

    
    
      In the United States, pharmacologist Frances Oldham Kelsey M.D. 
      withstood pressure from the Richardson-Merrell company 
      and refused Food and Drug Administration (FDA) approval 
      to market thalidomide, saying further studies were needed.

~~~
vdaniuk
Any example is pointless without considering opportunity costs. How many
people were saved due to faster availability of drugs?

~~~
kbenson
Then again, how many people would be lost if public confidence in drugs as
being safe was lost? We can't get a sizable portion of people to even
vaccinate their children anymore, and that was all sourced from a single
fraudulent paper, which the author lost his license over[1].

1:
[https://en.wikipedia.org/wiki/Andrew_Wakefield](https://en.wikipedia.org/wiki/Andrew_Wakefield)

------
JackuB
Just a note: I haven't seen it mentioned in article, but "gene therapy" was
discovered in 70s and it's widely used
[https://en.wikipedia.org/wiki/Gene_therapy](https://en.wikipedia.org/wiki/Gene_therapy)
\- what's new here is use for anti-aging and DIY nature of treatment.

I feel it's important to judge weight of this story.

------
dbcooper
Perhaps better to link to the original article at Technology Review:

[http://www.technologyreview.com/news/542371/a-tale-of-do-
it-...](http://www.technologyreview.com/news/542371/a-tale-of-do-it-yourself-
gene-therapy/#comments)

~~~
dang
Yes. Url changed from [http://bionicly.com/liz-parrish-gene-
therapy/](http://bionicly.com/liz-parrish-gene-therapy/).

From the guidelines: "Please submit the original source. If a post reports on
something found on another site, submit the latter."

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

------
xiaoma
This is eerily similar to the background story of many a comic book super
villain.

------
nefitty
I will definitely be keeping an eye on how this develops. Parrish is so
enthusiastic about her work it is contagious. I hope this project turns out
positively, for her sake and the sake of the research.

~~~
88e282102ae2e5b
> she lacks formal scientific training

> Telomerase ... is present in cells that can continue to divide indefinitely,
> like stem cells and tumors.

Your cells dividing indefinitely is not the opposite of aging, it's cancer.
This is completely quackery.

~~~
thaumasiotes
> Your cells dividing indefinitely is not the opposite of aging, it's cancer.

No. As long as they divide on schedule in the amount they're supposed to,
they're not cancer.

Dividing indefinitely is the opposite of aging at the cell level; aging at the
whole-organism level has some other stuff to it. I think there's so much
emphasis on the cell division clock because we know what it is.

------
gojomo
I love how this mixes the "n=1" self-experimentation of Seth Roberts [1] with
the "not just the President, but also a client" salesmanship of Sy Sperling
[2].

[1]
[https://en.wikipedia.org/wiki/Seth_Roberts](https://en.wikipedia.org/wiki/Seth_Roberts)

[2] [https://youtu.be/IuRLGdGnqSU?t=47s](https://youtu.be/IuRLGdGnqSU?t=47s)
[https://en.wikipedia.org/wiki/Hair_Club](https://en.wikipedia.org/wiki/Hair_Club)

------
blazespin
How is this irresponsible? It's her body. Yeeesh. She is brave to believe in
her work. I don't think the article author is aware of how the cause of ulcers
was proved and shared the 2005 Nobel prize.

[http://discovermagazine.com/2010/mar/07-dr-drank-broth-
gave-...](http://discovermagazine.com/2010/mar/07-dr-drank-broth-gave-ulcer-
solved-medical-mystery)

~~~
epistasis
Some ways this is irresponsible, from the (much much better) Tech Review
article:

>Fossell, the anti-aging entrepreneur, says even if Parrish were to somehow
succeed in slowing the aging of her body, an outcome he rated as unlikely, the
experiment would have no impact because of how it was carried out. “The
problem is that no one is going to believe them,” he says. “The credibility
will be zero even if they are right on the money.”

Also:

> “We as a company have our own ethics,” she says, referring to what she calls
> the need for inexpensive gene therapy treatments. “I am certainly not going
> to ask someone’s permission to potentially create new industries and cures.”

Anybody saying "we have our own ethics" is way way out there, it casts doubt
on all of the rest of their endeavor.

~~~
narrator
So if it works, only the people who have adopted Liz Parrish's ethics and
those who do not live under the rule of those who refuse to accept her ethics
will be able to live forever. That's because, in the ethics of Fossell, some
truths are not ethical to believe in, no matter what the evidence. They become
ethical to believe in once the proper authorities have determined those truths
to be ethical.

------
koopuluri
> "if successful she plans to roll out a public offering in three to five
> years despite neither treatment being FDA approved"

Is it legal to offer a product that hasn't gone through FDA as long as
consumers sign their acknowledgement?

~~~
gojomo
Probably not in the US. But the workaround is already in the article: do it in
another more-favorable jurisdiction.

Medical tourism for price reasons is already a big thing. People are also
traveling to Mexico or South Korea for stem-cell treatments unavailable in the
US. Startups might also find US jurisdictions that want to carve out more
experimental freedom than the FDA's defaults, as with stem cells in Texas:

[http://www.bloomberg.com/bw/articles/2013-01-03/stem-cell-
sh...](http://www.bloomberg.com/bw/articles/2013-01-03/stem-cell-showdown-
celltex-vs-dot-the-fda)

------
rewqfdsa
You have to admit that FDA approval can be onerous, and that a "mad scientist"
way of demonstrating technology can be an effective way to build public
demand.

Consider another technology: safe, effective, and reversible male birth
control [1]. It's been used in India for decades, but happens to be illegal in
the US right now due to the slow and expensive nature of the approval process.

[1]
[https://en.wikipedia.org/wiki/Reversible_inhibition_of_sperm...](https://en.wikipedia.org/wiki/Reversible_inhibition_of_sperm_under_guidance)

------
anonmeow
There is a quite large database of genes that affect aging in model organisms:
[http://genomics.senescence.info/genes/stats.php](http://genomics.senescence.info/genes/stats.php)
In this database there are 126 mouse genes.

It looks like (science funding) politics is the only reason we are not testing
how these genes work in large mammals and primates. The public is scared of
genetic engineering.

~~~
rewqfdsa
> The public is scared of genetic engineering.

And nuclear power, and geo-engineering. Public hysteria is placing us at great
risk on numerous fronts. Ultimately, though, I'm optimistic. Not once in human
history has anyone been able to suppress technology once it became both
possible to make and profitable to produce. In this instance, the Chinese will
probably beat us to gene therapy technology, and we'll desperately play catch-
up once we see the difference it makes in life outcome.

~~~
thaumasiotes
> Not once in human history has anyone been able to suppress technology once
> it became both possible to make and profitable to produce.

How do you feel about Japanese suppression of firearms?

~~~
rewqfdsa
If there had been a major war, you'd have seen them come right back. It's not
as if the Japanese simply forgot how to make the things during the Edo period.

------
reasonattlm
BioViva is one of the small groups interested in bringing telomerase therapies
to humans sooner rather than later. It seems they have started in on their
small long-term trial of human gene therapy for telomerase activation, and
have treated the first volunteer.

I should say that at any given time there is a fairly large gap between what
can be done in human medicine, the technology that actually exists and works,
and what is being done in trials. Most of this gap is due to regulation, and
the rest of it because development groups want to have a reasonable certainty
that what they are doing actually works, does more good than harm, and so
forth. The regulatory process might last a decade, while the actually useful
part of that testing (does it basically work, and is the risk profile
sufficiently defined and acceptable to patients) is only a few years. As the
cost of research and development in the life sciences falls, it will become
increasingly untenable that a huge ball and chain slows progress thanks to
regulatory risk aversion, and a growing number of initiatives will forge ahead
and build anyway. Some years ago I proposed the Vegas Group fable, something
that I think will happen in the fullness of time: alternative roads that
bypass official regulation in favor of faster progress, an inevitability in an
environment of low-cost research. Also, I think, a necessity.

What about the science here? I've never been a big fan of telomere lengthening
approaches, as average telomere length as it is measured today in immune cells
looks very much like a marker of the progress of aging, an end stage
consequence far removed from root causes. Telomeres shorten with cell division
and new long-telomere cells are delivered into tissues by stem cell
populations. Thus average telomere length in immune cells reflects some
combination of immune health and stem cell activity, both of which are known
to decline with age. You can't argue with the fact that telomerase gene
therapy has been shown to extend life in mice, however, though you can
certainly note that the size of the effect has been getting smaller as the
research groups have refined their data and approaches.

How does this work to slow aging in mice? At this point I lump enhanced
telomerase activity into the general category of approaches that either
probably work or intend to work by boosting the activation of old stem cell
populations, resulting in increased repair and tissue maintenance and thus a
slower decline into frailty and organ failure. More telomerase doesn't seem to
raise cancer risk in mice, but mice have very different telomere dynamics and
cancer risk profiles than we humans. The fastest way to figure out what is
going to happen in humans is of course to try it, and kudos to anyone
volunteering at this stage, but I'd be waiting for a few more years of testing
first in animal or tissue models closer to human telomere dynamics. In part
that decision would be driven by the fact that I don't think that this is the
best approach to move ahead with practical applications, to push ahead and get
things done. I absolutely agree that pushing ahead to get things done needs to
happen, but I'd rather see this sort of boldness for SENS treatments like
senescent cell clearance.

\------------

Digest of the Reddit AMA with the BioViva CEO:
[https://www.reddit.com/r/Futurology/comments/3ocsbi/ama_my_n...](https://www.reddit.com/r/Futurology/comments/3ocsbi/ama_my_name_is_liz_parrish_ceo_of_bioviva_the/)

I am patient zero. I will be 45 in January. I have aging as a disease. To take
on this role myself was the only ethical choice. I am happy to step up. I do
feel we can use these therapies in compassionate care scenarios now but we
will have to work them back into healthier people as we see they work as
preventive medicine.

The genes targeted are human telomerase reverse transcriptase (hTERT) and
follistatin (FST). In animal models neither FST nor hTERT have increased the
risk of cancer. We expect to see the same result on myself, and to that effect
we are measuring all known cancer biomarkers. The gene therapies on my body
are to measure the effects on humans. There is plenty of animal research to
support these gene therapies but no one was conducting human tests. We are
using both visual biomarkers, MRI and a panel of blood and tissue testing
including work on telomere length and epigenetic testing. We are collecting as
much data as we can, but unfortunately we currently don't have the coverage
rate for this therapy, how much of the tissue of the body is affected.
Depending on the tissue and vector used we ultimately expect to see similar
rates of transfection as seen in mice, which is somewhere between 5 to 60%.

We are working as hard as we can to bring it to the world as quickly and
safely as possible. We will will evaluate monthly and within 12 months we will
have more data. If the results are good we hope to have something to the
general public, that is cost acceptable, in 3-5 years. Our goal is to build
laboratories that will have the mission of a gene therapy product at a reduced
cost. Gene therapy technology is much like computing technology. We had to
build the super computer which cost $8 million in 1960. Now everyone has
technologies that work predictably and at a cost the average person can
afford. We need to do the same with these therapies. What you will get in 3-5
years will be vastly more predictable and effective that what we are doing
today and at a cost you or your insurance can cover.

We need a lab that works solely to bringing those costs down. We would need
about $1 - 1.5 million to build one lab to focus on this. We can expand as
needed. I would love to crowdfund this project but I do not know how to get
good results at that scale - I think the price tag is high for that modality.
We are raising investment to do offshore clinical trials. Many USA companies
do this. If we can cut costs we will be able to bring back a treatment that
people can afford.

------
ilaksh
Give her credit for taking a risk with her own health. Although of course the
animal studies haven't shown cancer development. But still a brave thing to
do, and obviously worth it given the existing animal studies.

I believe that regulations are holding back therapy development, especially in
any area that is not already popular.

I think this is an issue with government in general, and we will need a
totally new type of government if we are going to get a moral society that
integrates with technology.

------
YeGoblynQueenne
> Not once in human history has anyone been able to suppress technology once
> it became both possible to make and profitable to produce.

Yay, thank god. Otherwise it might take us whole aeons to heat the planet
beyond the point we can live on it.

~~~
rewqfdsa
There are lots of approaches to eliminating excess CO2 that we could talk
about if people like you didn't reflexively smear technology as some great
devil. Voluntary CO2 emission reduction looks so far like a doomed effort that
goes against every incentive built into human nature.

~~~
dang
> _if people like you didn 't reflexively smear technology_

Personal rudeness is not ok on HN, even when you think someone's view is
wrong.

