An Outsider Looks in on the Longevity Science Community

So you want to observe complexity. You might start with the obscure, rapidly moving collection of human endeavors that boil and ferment at the boundary of late medical research and early clinical development. Advocacy, fundraising, research, networking, non-profits, for-profits, and academics, a multi-level debate of a thousand opinions, and the foundations of new medicine are all mixed into one heated cauldron. In one sense it has always been this way. Figuring out what was happening in aging research and the quest for longer, healthier lives was a real challenge fifteen years ago, back at the turn of the century, let me tell you. But at least back then you could ground every investigation in the truth that if someone was trying to sell you something, then that something was irrelevant: snake oil and wishful thinking and nothing more. The serious science of aging and longevity was restricted to the laboratories, not yet to the point at which meaningful therapies could be constructed. Even stem cell treatments for narrow aspects of age-related degeneration or late-stage age-related disease had barely started to emerge back then.

Nowadays it remains a sizable task to make sense of the science and the state of development if you are coming in as an outsider. Where to even start? That is one of the reasons I continue to write Fight Aging! - because signposts are needed, and for better and worse this is one of them. If people find it hard to make sense of where things stand, how can we ask them to give us their support and their funds to move forward towards rejuvenation therapies? Education, in the sense of providing resources and making matters comprehensible for those who are interested in learning more, is an important part of advocacy.

There is one fundamental way in which understanding longevity science has become much harder today: you can no longer draw the line between the laboratory and the commercial world to say that only in the lab can you find legitimate, useful efforts to build treatments for the causes of aging. A limited number of actual, real rejuvenation treatments that clear or repair one specific root cause of aging are in development, in clinical trials, in biotech startups. There will be more with each passing year. As a result you have to know a lot more about what is going on, and must be prepared to evaluate the basis for the treatments that will be available via medical tourism, long in advance of any regulatory approval, just a few years from now.

The popular press article I've linked below is written by an outsider in the context of a time of great change, when the approach to aging in the research community has undergone a fundamental shift, SENS rejuvenation research and any number of gene therapies that might compensate for aspects of degenerative aging are moving from lab to development, or and many of these treatments will pour directly into the global medical tourism marketplace. These treatments are not all of the same class, however, and their usefulness will vary greatly: repairing the damage that causes aging and age-related disease, such as via SENS treatments, is very different from modestly compensating for the harm that damage causes, such as via most of the plausible near-future gene therapies. However: it isn't a joke to say that if you know the right people, you can go to an overseas clinic and pay a few tens of thousands of dollars to undergo a gene therapy today. It probably won't be terribly efficient at obtaining a good percentage of cells affected, but that issue is already pretty much solved back in the labs, and will also be solved in the field in a few years. The avalanche is underway, and loud enough that even normally oblivious sections of the media are pricking up their ears:

Special Series: Is Silicon-Valley Birthing the Next Set of Pro-Lifers

Elizabeth Parrish is 44, the tough-gunning, sharp-talking CEO of life-sciences startup BioViva, and seemingly full of life herself. But she says she suffers from a deadly disease. Hoping to stave off the sickness, Parrish recently journeyed to a clinic in Colombia, where she underwent a course of therapy that the FDA hasn't touched with a 10-foot pole. One treatment would alter her telomeres - the stuff at the end of her DNA. The other would inhibit a protein that stops muscle growth. Her affliction? Aging - and all the nasty diseases that come with it, from Alzheimer's and heart trouble to "basic muscle deterioration." Parrish, though perhaps unorthodox, is not alone in her insistence that aging is an evil we have a right to combat. Rather, she's part of a whole generation of futurists talking eagerly of the right to grow old in a better way. At a time when we're living longer - the average life expectancy in 2013 was nearly 80 years old, according to the CDC - this cohort wants even more. They want to live not a few years longer, but tens, even hundreds, of years longer, and what's more, they believe they - and one day all of us - are entitled to do so.

The burgeoning interest in long life isn't mere academic fodder: It has implications for public policy, law, and the health care system as we know it. The central question around which this explosive new debate will churn: Is aging itself a disease? Or is it, as the dominant thinking goes today, just the unfortunate condition that gives rise to a bunch of other nasty illnesses? If societies decided that old age was not a sad yet inevitable fact of life and that it - like malaria, like cancer - demanded a bevy of dollars and doctors battling it, then your primary care doctor and insurers, palliative care providers and government agencies would all have to adjust to a brand-new gravity. This is a whole new iteration of the term "pro-life."

The aging haters have a reasonable spiel down: It's health, pure and simple. That's the line researcher Aubrey de Grey, one of the most prominent scientists working on anti-aging issues, gives me. We're not talking about a right to never die, in his view, or even a right to live on and on. It's the right to have your health taken care of, your diseases ebbed away. It's just that aging happens to be an "uber-disease" we've not yet started to fight. Rather, if we live longer, well, that'll just be a rather nice side effect of researchers like him solving aging diseases.

Despite controversy over certain methods, some spine-tingling peer-reviewed research has lately appeared from hospitals, universities and privately funded groups like de Grey's Mountain View-based SENS Research Foundation - which just had its first paper in Science this year - or Google's biotech company Calico (which is still stealthy as hell and said they couldn't speak to us yet). Nonetheless, progress so far has come at a pace far slower than the private sector likes, and is laden with all the annoyances of bureaucracy and peer review. The National Institute on Aging (NIA) doesn't have much money, and the way it gets distributed is "inherently biased against revolutionary work," he huffs. A spokeswoman for the NIA pointed us to some examples of NIA-supported research in aging biology and in the "burgeoning field" of geroscience (which doesn't treat aging as a disease, but offers a kind of interdisciplinary approach).

And so, as with so many of our grand inventions of the future, the wealthy and the adventurous of the world will enter the fray first, potentially paying exorbitant amounts to be patient zero over and over again. Does that mean the right to a long life won't trickle down to the masses? No, de Grey insists, obviously tired of this question of access. "Once people get over the psychological stranglehold that humanity has" when they talk about death, "there's not going to be any problem at all." People will see the tech and demand it; doctors, insurers and the government will have to cave. It'll get cheaper, as technology does. Anti-aging therapies, de Grey predicts, are "going to be as available as water."

Comments

I sense a sort of snarky tone in this article.

Posted by: Ham at January 8th, 2016 10:16 PM

Aubrey De Grey and others insist that anti-aging medicine will be available to everyone, but how do they know that? There are people right now who can't afford adequate medical care even for stuff like cancer. Medicine hasn't gotten any cheaper; some things are still horrendously expensive. People have to choose between getting necessary medical care and paying other bills. Why would hypothetical anti-aging/rejuvenation/reverse-aging medicine be any different?

Posted by: MissKaioshin at January 8th, 2016 11:16 PM

A surprisingly sober, non knee-jerk article.

Posted by: Antonio at January 9th, 2016 2:41 AM

Just so that nobody is mislead by MissKaioshin's trolling: That's simply false. Only drugs whose patent hasn't expired yet, or procedures that require expensive machines (like NMR) or surgery, are expensive today in cancer treatment. None of that will apply to SENS after the first one or two decades. And anyway these treatments will be paid for by the government, since today 90% of medical expenses are due to age-related diseases, and rejuvenation therapies will simply eliminate those, and also eliminate retirement, so additional wealth will be available to the country.

Posted by: Antonio at January 9th, 2016 2:54 AM

In a perfect world, the government would cover it. But I'm not holding my breath on that happening initially, or any time soon after there is a full comprehensive SENS suite of treatments. Aubrey has said in one of his AMA's that they likely won't have any control over it once they pass off the work from their labs to the pharma/biotech companies... So we'll see. I'm going to operate under the assumption that it's going to cost money, at least when it's new, and do my best to start funding another retirement account I guess.

Posted by: Ham at January 9th, 2016 5:41 AM

I'm not assuming a perfect world at all, Ham. I don't think it'll be expensive for more than ten years, once it's backed by clinical trials and it reach the legal market.

Posted by: Antonio at January 9th, 2016 8:13 AM

SENS-like treatments will be injections and infusions of mass-produced small molecule drugs, gene therapies, and the like. They will cost much the same a few years after their introduction as do today's biologics for immune suppression in autoimmune diseases, the closest present technological analogy. Even in the dysfunctional US system these are around a few thousand to ten thousand dollars per course of infusions, and unlike those treatments SENS treatment programs would be limited in scope: you'd undergo one every decade perhaps. It wouldn't be a constant ongoing treatment program.

Posted by: Reason at January 9th, 2016 8:18 AM

I hope you're right Reason. However, things like that Glybera gene therapy costing 1m euros do make me skeptical. There's another gene therapy coming out from Sparks Therapeutics for inherited forms of blindness that's also projected to be expensive. On the other hand though, these things are for rare diseases, not something everyone will get. And as more therapies become available, and gene therapy matures, it should plummet in price for sure. Hopefully.

And Antonio, yeah, there might be an early adopter premium for the first 10-20 years for sure... It just depends on how old we are when (if) it becomes available, and if we'll be able to wait long enough for the price to come down. Interesting times ahead, for sure.

Posted by: Ham at January 9th, 2016 8:52 AM

@Ham - I think Glybera is actually a good counterpoint to your worries about cost Ham. The German government has already decided to fully fund the treatment in any citizens who need it. Because it works out to be much cheaper than injecting people with the missing enzyme over a lifetime. Also Glybera has been priced probably uniquely highly due to it targeting an extremely rare disease. Aging is not a rare disease.

Posted by: Jim at January 9th, 2016 10:20 AM

Antonio:

Why would the government subsidize rejuvenation treatments when it won't even subsidize basic medical treatment? I'm talking about the US government, of course. But even in Europe and other countries with universal healthcare, there is a danger that UHC will be rolled back and dismantled because they're too expensive to maintain.

All of this is assuming that rejuvenation treatments are even available in the not-too-distant future, which I'm not convinced will be the case. Even if you guys think that anti-aging will become cheap within 10 years of its debut, who's to say we're not still 90+ years away from it being developed? Yeah, sure, it becomes cheap within 10 years, but medical science is hard. Genetics is hard. Biology is hard...

Posted by: MissKaioshin at January 9th, 2016 8:01 PM

MissKaioshin:

Your comment contains your own rebuttal. It IS subsidized in Europe.

And if a country doesn't subsidize rejuvenation treatments, it will have a large part of its population that can't work and that need to be cared for. That is a huge competitive disadvantage with respect to the rejuvenated countries. I'm getting tired of you always asking the same questions, people answering them, and you asking the same questions again in the next post. That's why I consider you a troll.

Posted by: Antonio at January 10th, 2016 2:29 AM

, but medical science is hard. Genetics is hard. Biology is hard

Obvious troll is obvious. Seen this person on Reddit too spewing negative comments. Yes biology is hard but to hell with doing nothing about it.

Posted by: Steve h at January 10th, 2016 5:54 AM

, but medical science is hard. Genetics is hard. Biology is hard

Yes biology is hard but to hell with doing nothing about it.

Kaioshin asks the same questions over and over and despite being given answers continues to ask. This is the mark of someone who is either foolish or a troll. I'm sure most us can tell which.

Posted by: Steve h at January 10th, 2016 5:58 AM

My concern has always been with the structure of the Ageing research initiative as an industry, as a collection of entities (labs, etc.), and its underlying philosophy on how it would be developed, funded, and distributed. Not because there may or may not be good science, quality people, or a reasonable success along/at the end of the path at some point; but just in its -to be frank- naive view of the research world, populist views, and decidedly non-profit/ full-transparency preference for accomplishing goals.
Don't get me wrong - likely noble; likely productive; likely inclusive - but that's not good enough. If the goal is getting as many people onto treatments in as little time as possible, then this approach is less than ideal and shows a social compromise that will add decades to widespread middle-class implementation. It is the PBS approach or the Al Gore approach - comfy and altruistic (in a bit of a self-righteous way) but fraught with politics, drama, and moralizing - effectively polarizing the public and fuelling fringe values.
Witness the Genome initiative of the last 15 to 20 years - completely spear-headed by a ruthless, private, for-profit corporate-entity lab, Ventner Institute. There was a simultaneous 'open' government initiative that was half as productive, besieged with protest, and diluted with personal in-house agendas and media sensationalism (though some was positive and supporting). The Ventner institute used government data, beat off protesters with security staff (allegedly) and discarded dozens of non-conforming/non-performing staff - and they won and are continuing to dominate, perform, and make money. Such is with anti-ageing. But maybe there is no other obvious course - perhaps Calico and other private institutes have gobbled up most of the scientists within their 'stealthy' sphere, effectively splintering the expertise, knowledge base, and monies available? perhaps that's the nature of such a controversial line of research - to hide in the shadows, profitably avoiding public 'noise' and controversy. A shame - but it is the cynical reality required to meet deadlines and get results in such a world as ours. I trust that SENS will get results and add to the knowledge base, but are they being as effective and productive as they could be? Time will tell.

Posted by: Jer at January 10th, 2016 10:06 AM

I can remember the town-hall meetings about healthcare back in 2009. Even though it would have directly benefited them, many poor people came out in opposition to universal coverage or even a public option. This was largely due to an astro-turf campaign, organized by the private health insurance industry and the Koch brothers, i.e. their lovely "tea party."

Anti-aging medicine has not entered the public sphere yet, but I can imagine the private health industry would also fight coverage for it. If we're made to be biologically younger, it would then mean we should be paying smaller health premiums. Many people wouldn't need to see a doctor, if they didn't need to when they were 25. I can't imagine how they'll spin conservative ideology, in order to shut down any talk about government coverage for anti-aging medicine (why should you pay to make someone else younger? THEY'RE STEALING YOUR MONEY!), but I strongly believe they can find a way.

This is all assuming private health insurance is a permanent institution, and the socio-political atmosphere won't be changing anytime soon. But if the news tells us anything, is that politics has grown increasingly volatile all over the world, and past trends can only inform us so little about what we should be expecting tomorrow. I'm not promoting either socialism or capitalism. All I'm saying is it's too early to make predictions, if we don't know how politics will play out this year alone even.

Posted by: Eric at January 10th, 2016 1:10 PM

Eric,

That's kind of how I feel. There would be obvious perks for it being covered, but who knows if it will be or not. People can be convinced of some crazy things, so it's hard to predict with any degree of certainty. That said, it's why I'm going to save up for it, just in case it becomes available, and it's expensive and not covered by insurance or the government.

Posted by: Ham at January 10th, 2016 2:04 PM

@Jer: "Not because there may or may not be good science, quality people, or a reasonable success along/at the end of the path at some point; but just in its -to be frank- naive view of the research world, populist views, and decidedly non-profit/ full-transparency preference for accomplishing goals."

I have just the opposite impression. Many (maybe most) SRF-related papers are closed access, and they are clearly moving to collaborations with companies (see the last two annual reports).

Posted by: Antonio at January 10th, 2016 3:15 PM
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