One of the things you find out pretty quickly if you ever do any patient advocacy is that most people don't care about medical research. They don't think about it, don't really understand it, or the bounds of the possible or how the system of technological development works in medicine, or put any thought into how it might affect them until it is too late.

Something I just wrote for a different audience on this subject:

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There are a lot of people who have both a medical condition and a lot of wealth - tens of millions of dollars or more. In this day and age, a fraction of that wealth is enough to produce a prototype treatment from scratch for many classes of condition, if you are willing to wait the decade or two that low-cost basic science takes to run its course. Alternatively, for a faster result in the five year range, that much money is enough to take a couple of promising potential therapies with initial animal studies and move them to prototype status. Not all conditions are amenable to this sort of approach, but many are. When you have a prototype, you license it freely to maximize the odds that it will be picked up and improved upon, and meanwhile pay a reputable clinic in one of the less regulated portions of the world to set it up for your own use. This is all very possible for a wide range of medical conditions. Why is it that so few wealthy, sick people take this path?

In the longevity science community we tend to ponder a very narrow facet of this question, which is ask why, with very few exceptions, the wealthy of the world are not funding rejuvenation research. They are all aging to death, just like the rest of us. Why are they walking off the cliff when they have a good shot at preventing that outcome? Yet the broader question is also of interest: not just aging research, but all medical research. I was pondering this after donating to the present crowdfunding initiative for DRACO, a universal basis for cheaply creating effective treatments for any and all viral infections, such as those that are poorly controlled and afflicting large numbers of people today. How many individuals are there with both resistant viral hepatitis and enough money to take DRACO to what its inventor considers the finish line of readiness for human trials? The cost of that is a few million dollars at this point. I can think of a couple of individuals from the last celebrity generation alone who are in this demographic. But of course it isn't happening, these people are not jumping in to make waves and build out a prototype therapy that could cure or control their infections. So it seems to me that perhaps our first problem with regard to funding rejuvenation research isn't in fact a matter of convincing the world that treating aging is a viable goal in medicine. That is a challenge, and has to be accomplished, but it isn't the first issue in line. That first problem is that next to no-one with the wealth to have a fair shot at solving their own medical problems through funding research thinks that they can in fact achieve that goal.

We can debate as to just why this is the case. For example, firstly there is simple ignorance of the possibilities. Some people and their supporting networks don't have the framework of ideas that lights the way. I think it isn't unfair to say that most people don't have any great insight into medicine as a system that can be changed and improved. I certainly didn't for half of my life. Engaging with doctors and learning about a specific condition because you happen to have developed it may or may not provide that insight - it strongly depends on the individual. The state of medicine and even the state of waiting for better medicine can be taken as set in stone. You can be good enough at what you do to become very wealthy, and yet lack the ability or patience or drive - or that framework of ideas - to learn the science behind the medicine, see that this science can be influenced, and understand the economics and connections well enough to see how to influence it. That is a tall order for someone who has invested decades in the minutiae of their own business and profession, a hard right turn in life, and a significant investment in time and will.

Secondly, there is a poster child effect here. Consider Michael J. Fox as one example, someone who has given large sums to Parkinson's disease research over the past two decades. Unfortunately, this is a condition in which it will take a long time and enormous funding to establish effective treatments, as is the case for most neurodegenerative diseases at this time. Conditions for which this is true tend to get a lot of the press, since there is more work taking place, and also more philanthropy. Secondly, the span of Fox's philanthropy crosses from a time in which life science work was very expensive and time-consuming into the present in which it is much cheaper and faster. Medical research is very much easier today than it was at the turn of the century: all of the tools are greatly improved, as is knowledge of cellular biochemistry. But people think of this, and similar cases, and see decades of expense and no resulting cure. Subtleties such as the considerable progress achieved in both understanding the condition and building a foundation for treatments yet to come are somewhat lost on the world at large.

Thirdly, it is enormously expensive to move from prototype therapy to clinical availability through the regulatory gauntlet. That is well understood, and it is why most people think of medical research as fantastically expensive. But it is not. Building prototypes is cheap. Early stage research and investigation can be so cheap that it can be crowdfunded by ordinary people like you and I. It is the testing required to prove reasonable safety for clinical translation of a prototype therapy that is merely ordinarily expensive. Then it is the over the top regulatory compliance that is par for the course in the US and Europe that drives the cost through the roof, restricts all meaningful clinical development inside the system to the entrenched Big Pharma interests, and ensures that all too many lines of research are never developed, and never even fully researched, as they cannot be cost-effective.

This is why I point out the strategy of open licensing and medical tourism. Build the prototype, then give it away and undergo the treatment yourself. We live in a world in which the BioViva CEO can be (probably) the first human to undergo a particular gene therapy with good animal data, and get that done for a low six figure cost or less. Regulation and its tremendous costs are not needed to produce a treatment that can be judged safe enough to risk - and that choice of safety should be up to the individual in any case. Again, however, near all of the people with the money to do this sort of thing from scratch, and with a condition that might be treated, don't see things this way. Wealth doesn't magically grant knowledge or wisdom. They, like most people, view medicine as an enormously expensive undertaking, far beyond their ability to move the needle, where they think of it as something that can be influenced at all.

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Cancer research has a number of potential disruptive approaches that might transform the whole field if supported, turning from a case of trying to fix ten thousand very different situations into targeting just a handful of commonalities in all cancers. The best from my perspective is telomere extension interdiction - all cancers must lengthen telomeres. So if you can turn off telomerase and ALT in cancerous tissue in a targeted fashion, problem solved, and you only need to figure out the per-tissue deliver system. If you can just turn off telomere extension globally for a while that might also be enough to deal with most cancer, making it a truly universal therapy.

Some of the California labs are working on this sort of thing.