The stingy rich

Why are so few wealthy sick people funding medical research to treat their illness?

Why Do So Few Wealthy, Sick Individuals Fund Medical Research to Treat Their Conditions? (Fight Aging!)
Translated by Ariel VA Feinerman, Geektimes

There are many people who have both chronic diseases and a lot of finances – tens of millions of dollars or more. Nowadays, part of this wealth is sufficient to create a prototype therapy from scratch for many classes of diseases, if you are willing to wait ten or twenty years until they are in the clinic. Alternatively, for a faster result in a five-year period, this money will be enough to take a couple of promising potential treatments with initial animal studies and transfer them to the status of a prototype. Not all diseases are amenable to this approach, but at least many of them are. When you have a prototype, you openly license it to increase the chances of its recognition and improvement, and in the meantime pay a reputable clinic in one of the little regulated parts of the world to adapt it to your own use. This is possible for a wide range of medical conditions. Why do so few rich, sick people follow this path?

In the scientific community of life extension, we tend to think about a very narrow aspect of this question, why, with very few exceptions, rich people do not fund rejuvenation research. They age and die, just like the rest of us. Why do they jump off a cliff like lemmings when they have a good chance of preventing this outcome? However, a broader issue is also of interest: not only rejuvenation, but all medical research. I was thinking about this after I donated to the DRACO initiative, a universal framework for creating effective treatments for any viral infections that are poorly controlled today and infect a large number of people. How many people live with resistant viral hepatitis and have sufficient finances to finance DRACO and organize clinical trials? The cost of this is only a few million. I can think of a couple of people from the last generation of celebrities who are infected with dangerous infections. But of course that doesn't happen, they don't jump in to help build a prototype therapy that could cure or control their infections. Therefore, it seems to me that perhaps our first problem in funding rejuvenation research is not really a matter of convincing the world that the treatment of aging is a real goal in medicine. This is a challenge, and it needs to be accepted, but this is not the first problem. The first problem is that few people who have finances and have a chance to solve their own medical problems with the help of financing believe that they can achieve this goal.

We can discuss why this is the case. For example, firstly, a simple ignorance of the possibilities. Many people and their environment do not have ideas that light their way. I believe that most people do not have a great understanding of medicine as a system that can be changed and improved. Like I haven't had for half my life. Interaction with doctors and knowledge about a particular disease, because you may have contracted it, may or may not provide this understanding – it depends greatly on the person. The state of medicine and even the expectation of better medicine can be taken as an unbreakable rock. You may be good enough at what you do to become very rich, and yet not have the ability or the patience or the desire – or the basis of ideas – to learn the science underlying medicine, to see that this science can be influenced and understand economics and communications well enough to understand how to change it. This is a high bar for those who have invested decades in the specifics of their business and profession, a sharp turn in life and significant investments in time and desire.

Secondly, there is a poster effect with a child. Consider, for example, Michael J. Fox, a man who has donated large sums to Parkinson's disease research over the past two decades. Unfortunately, this is a disease in which it will take a long time and huge funding to create effective treatments, as is the case for most neurodegenerative diseases in general. Diseases for which this is true tend to get a lot of press attention as there is more work going on as well as more philanthropy. Fox started philanthropy at a time when working in life science was very expensive and time-consuming, but now it is much cheaper and faster. Today, medical research is much simpler than at the beginning of the century: all tools have been significantly improved, as well as knowledge about cellular biochemistry. But people think about this and similar cases, and see decades of spending and no progress. Such things as significant progress both in understanding the disease and in creating the basis for its treatment, alas, are still largely not realized in the world.

Thirdly, it is extremely expensive to move from prototype to clinical practice through bureaucratic regulation. This is well understood, and that's why most people find medical research fantastically expensive. But this is not the case. Prototyping is cheap. Early-stage research can be so cheap that it can be funded by ordinary people like you or me. Only clinical trials are moderately expensive. But compliance with all regulatory requirements in the US and Europe raises the price millions of times, limiting all significant clinical developments within the system to the entrenched interests of Big Pharma and ensuring that too many areas have never been developed and have never even been fully studied, because they cannot be cost-effective.

That's why I'm calling for a strategy of open licensing and medical tourism. Build a prototype, then give it to the public and do the treatment yourself. We live in a world in which the head of BioViva was (probably) the first person to undergo gene therapy with good results on animals, and did it at a price of a million or less. Regulation and its huge costs are not necessary to produce a treatment that can be considered safe – and in any case, the choice of safety should be individual. Again, however, almost all people with money and conditions that allow them to do such things from scratch do not see this. Wealth does not give magical knowledge or wisdom. They, like most people, view medicine as an extremely expensive undertaking far beyond their abilities, and they don't think of it as something that can be influenced at all.

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