Posts Tagged ‘libertarianism’

Preface to Fundify, or F*ck Chordoma

November 4th, 2009

In 2004, I was diagnosed with a very rare type of cancer. Following my surgery and an extended period of reading the academic literature on the disease, it became obvious that I was not cured.  Worse than that, there was little active research that had the potential to cure, or at least manage, Chordoma. Being an insufferable libertarian, I opted to start a 501(c)(3) organization, The Chordoma Research Foundation, with the sole purpose of aggregating funds and awarding grants to researchers.

At the time, (as a result of well-hidden bug,) I believed I would soon have access to a lot of money. Consequently, I formed the Chordoma Research Foundation as a funnel through which I could increase my donor potential (i.e. receive tax deductions.) I was largely uninterested in developing a proper full-fledged not-for-profit effort. I understood how research worked; the need for interdisciplinary facilitation; and the importance of starting projects sooner rather than later. I just wasn’t motivated. If my big payday came, I could buy research. Money opens doors. If I could spend my time doing what I had a passion for while being able to pay for research myself, it would have been ideal. My big payday did not come (and has not come – yet.)

Happily, pure dumb luck intervened. My parents, fueled by desperation coupled with a bit of good old fashioned common sense, decided to send a letter to our family and friends explaining our compelling need for research. The concise version:  please give us money so our son has a chance of not dying before his thirtieth birthday. It raised tens of thousands of dollars – quickly.

Inspired by the success of this campaign, I envisioned a web-app that could replicate this success across many people affected by Chordoma. Unfortunately, it was a pretty uninteresting project. Web development is not intellectually stimulating. My potential big payday project was (enjoyably) intellectually exhausting. The brief inspiration and motivation I experienced after my parent’s campaign was insufficient. Instead of building my web application, I only designed a simple website explaining the cause to other people with Chordoma.

Serendipity intervened — again. By this point, my small website for a very rare disease was receiving about three phone calls per day – a not insignificant amount. Initially, this produced mostly friendships (shout out to Bill Dorland, Michael Torrey, and a collection of other friends who do not have URL end-points.)  Soon, it yielded more tangible rewards. One day in August, while stuck in traffic heading to a Counting Crows concert, Simone Sommer called me. Her son, Josh, had gone through roughly the same experience as me and she also found the current state of research to be unacceptable. She wanted to be involved. To be precise Dr. Simone Sommer – a credential that, shockingly, opens doors in the medical community – wanted to be very involved.

Over the next few months and after many extended phone calls with both Josh and Simone, it became clear that they were willing to do all the things I knew had to be done but was uninterested in doing. More than that, Simone’s M.D. and Josh’s proximity to Duke – which housed one of the few researchers who was making headway into Chodoma research – meant they could do it better than I could. I (happily) passed the torch to them while I pursued my big payday (which is still, as of 2009, yet to arrive). They established the Chordoma Foundation. I dissolved my foundation and folded my assets into theirs.

For a while, I played a minimal ongoing role in Chordoma community. I continued to speak with a lot of patients, but only because I had already established relationships with them. I continued to follow papers on Chordoma – and discuss them at length with Josh – but that was mostly to satisfy my perpetual curiosity. (I am a if the plane is about to crash, I want to be in the cockpit type guy.) My father sits on the Chordoma Foundation’s board. I do not. My mother coordinates community outreach. I do not. However, late last fall, it became clear that they had reached the point at which money was the primary bottleneck. Earlier, the Chordoma Foundation had hosted a fantastically successful international, inter-disciplinary research conference. Cross-pollination of ideas occurred. Research was proposed…and, undertaken. Interest was piqued. Now, the low hanging fruits were gone. Now, there were calls for money. I was compelled to develop a prototype.

Initially, it worked well, although I am not convinced it raised money above what would have been raised anyway. It did help by connecting many people to each other, acting as an ad-hoc, emergent support group. This might not have translated directly into money, but it obviously was beneficial to the community.

Why didn’t it work as well as I expected? It was a sh*tty implementation! I hacked it together in four weeks in anticipation of the Thanksgiving fundraising season. We even launched it two days prior to Thanksgiving. It’s not really shocking that an idea only half-conceived was not fully-successful. Fundraising was not attributed in real-time; was not always accurate; and the feedback mechanisms employed were noisy. Additionally, one of the most important features, coaching (i.e. nudging) was never included. Unfortunately, disinterest asserted itself…again. I halted further development and took an internship in DC. Fundify was not yet to be.

Fast forward one year – present day. I just quit my job in order to properly build Fundify. This time, I am motivated. The project has not become interesting. It merely ceased to be something I can push off any longer. All paths are now dependent on larger grants being awarded. Larger grants require money. Enter, Fundify.

Stay tuned.

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Evil Pharma and The Cure for Cancer

September 8th, 2009

Cancer was cured decades ago. It is only because of the insidious activities of Big Pharma that these wonder drugs are not publicly available. Or at least, this is what a significant portion of people actually believe.

In truth, cancer is remarkably complex. The human body is both incredibly fault tolerant and very diligent when it comes to eradicating badly functioning cells. In order for a major cellular mistake to form and continue to multiply unchecked, the genetic aberration has to be extremely well-positioned. While modern medicine is impressive, it is still largely groping in the dark. It is not by greed’s hand that we have no cure for cancer; it is by the hand of complexity.

Furthermore, as is the case with most addle-minded conspiracies theories that pin the world’s ills on the activities of capitalism, this argument falls apart for a simpler reason: science is a team effort. It is highly unlikely that only one person would know of such a silver bullet. The set of people who make a career of medical research only to make money is dwarfed by the set of people who make a career of medical research to help the sick. In order for curative treatments to be mothballed in the name of profit, both the unbelievably greedy and the commonly compassionate would have to be convinced to keep quiet. What compensation would be required to silence both sets of people? Many of these researchers have dedicated their lives to demolishing specific diseases. It is highly unlikely that once doing so, they would take a massive payoff while sacrificing those whose lives they were hoping to save.

One common and valid argument in favor of non-profit research projects and against Big Pharma concerns profit incentives. Pharmaceutical companies do have a greater incentive to find treatments that require long-term (or permanent) reliance on their products than they do in finding curative drugs. It takes a monumental amount of money to search, select, develop, and bring a new drug to market. In order for a drug to be viable from an economic perspective, there must be a sizable market to offset these costs. It follows that treatments that are more likely to be approved while showing some efficacy — such as chemotherapeutic agents — would represent their more rational choice when allocating research and development budgets. Most Chemotherapeutic agents exploit small differences in the tolerance for damage between healthy and unhealthy cells. This requires the relative simplicity of observing rates of cell death after exposure to chemicals. Highly targeted molecular agents require a far greater understanding of the cell, accounting for pathways rife with feedback and cascading signals. It is far easier to design a carpet bomb than it is to design a cruise missile.

However, this does not mean that large government research efforts are the solution to the problem of this incentive structure. For one, they too have a similar incentive to pluck the apparently low hanging fruits represented by crude but simpler treatments. While their funding is not tethered to the democracy of market mechanisms, they are (almost as) accountable for results or lack-there-of. A highly-risky, speculative research project — one that has the potential to greatly advance the field of medicine — is judged only by its outcome. If a risky project fails to yield any useable knowledge or therapies, those who worked, approved, and funded the project will be judged harshly. Consequently, it often makes sense for decision makers to fund less risky projects (under the banner of “good science”). They can claim that were not expecting a miracle, only incremental advances. They fail to recognize (or state explicitly) that these minor incremental advances may be climbing a local minimum in the search space for therapies — the payoff may never come.

Assuming that both the for-profit and government inspired research projects are biased towards projects that, from the perspective of those afflicted with a disease, are suboptimal, a third source of research endeavors emerges — the non-profit sector. Researchers who want funding for projects that lie outside the comfort region of traditional sources of project funding would likely find the non-profit sector to be a strong ally. There is a general willingness — if not insistence — of cancer survivors to be part of any movement that marches towards cures and more humane treatments. If presented with projects that promise the possibility — however remote — of significant advances most cancer survivors are willing to contribute financially. While there is a risk of exploitation by quackish actors soliciting funds for poorly formed or entirely fraudulent projects, lightweight organizations acting as intermediaries between the researchers and donors would greatly reduce this threat. These organizations, being numerous, would increase the diversity of the portfolio for medical research.

While methodical, incremental research represents the bedrock of science, it is important to recognize that it is the large leaps resulting from the exploration of entirely new areas that often causes true progress. Large pharmaceutical companies and government research initiatives underweight the value of riskier projects for organizational reasons that are unlikely to change. Consequently, the burden of funding these projects falls to those more willing to take on risk — those affected by the diseases.

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Re: The Two Flaws of Libertarian Economics

January 8th, 2009

Zed Shaw wrote a blog post titled The Two Flaws of Libertarian Economics (since then removed from his website) that made me angry (mostly because I like Zed Shaw). This was my rebuttal. Zed did answer my email and we had a conversation that went back and forth a few times. In the end, neither of us had changed our opinions.

Zed:

I almost always respect your opinion; I especially enjoy it when you are being appropriately flippant (an ironic statement, yes). Therefore, I wanted to take a few minutes to disagree with your post: The Two Flaws of Libertarian Economics.

The problem with self-described libertarians is that they are often very smart but only talk to other very smart libertarians. Their arguments become ridiculously path dependent until the point where they lose sight of the applications of their debates. Can a system of free-market local defense services exist and work better than the currently provided government ones? I don’t know; I doubt it; and I don’t really care. It’s simply not relevant and is merely the product of incestuous ideas.

Any libertarian who states that large corporations are more efficient than large government bureaucracies is simply dogmatic. The problems that plague the executives in government bureaus are largely the same as those that plague executives in both for and non-profit corporations: They answer to a stakeholders; They must show good results; If they don’t show good results they get booted; Therefore, the rational course of action is to take the least risky path to ensure their own positions. Bureaucracy is bureaucracy.

However, the libertarian doctrine (or I suppose I should say the facet of libertarianism that I subscribe to) does not require, or even encourage, large for-profit corporations as a means of solving all problems both social and technological. It does make the assertion that any system that maximizes the diversity of investment is preferable to one that does not. Capitalist systems are not superior because the profit motive forces capitalist actors to work harder, better, faster, stronger; Capitalists systems are superior because they take on more risk and often enough it pays off well. Libertarians who fail to recognize this do their own cause a great disservice. They are the same libertarians who dogmatically oppose all and any regulatory efforts.

Now, while the willingness to take on risks is responsible for capitalisms excess gains relative to state dominated economies, it is also potentially dangerous. To state that the current economic crisis proves the inefficiency of corporations, as you did, is very misleading — everything was distorted. Contrary to what you intimated, capitalism is an evolutionary system. And, just like any evolutionary system, it is not necessarily the best that survive in the short-run; It is only those that were, by accident or merit, the best suited for exploiting the current environment that survive. Corporations that were long-term blind and took on insane risks to capture the high short-term returns offered by sub-prime lending got big and got big fast. They were the most fit for that particular environmental aberration – an aberration created by the political fetish of advocating that every American, regardless of credit worthiness, own a home.

Removing the government’s encouragement and creation of the sub-prime industry would likely have prevented the sub-prime crisis. I am not stating that the government causes all economic crises (it does not) but in this case it was the central mover. I am also not saying that prevention of the sub-prime crisis would have prevented the current economic debacle. The appetite for risk was grotesque in recent years; If it wasn’t sub-prime, it would have been something else.

This leads me to my final point: A crisis is not necessarily a net-negative event. I realize this might be too controversial or offensive and I risk overshadowing my previous argument, but I believe it is an important point. Times of crisis, regardless of cause, result in a general refocusing of all efforts and a rethinking of everything. Certain deficiencies come sharply into focus. Oil may have reached $150 per barrel for fundamental or speculative reasons, but it doesn’t matter. No one can debate the utility of an alternative energy system and nothing could have provided a greater impetus for one than $150 per barrel oil. We do not yet know what positive impact the economic crisis will yield, but I will state (blindly) that I will be substantial.

Right now efforts are still focused on sorting out the economic crisis and the field is very murky. Your contribution was to state that policies that are libertarian in nature were fully or partly to blame. A libertarian who says zero-regulation is the only acceptable policy is completely wrong but, luckily, has no influence on policy anyway. However, the most valued elements of the libertarian doctrine – choice and personal responsibility – are, almost inarguably, worth defending. This is the true core of libertarianism.

Sincerely, John Nelson

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