Edit: Josh Sommer directed my attention to How a Healthcare Company Can Accelerate Translation of Scientific Knowledge to Practice, which was mostly what I had in mind.

The mainstay of drug discovery is automated molecular screening, dose-escalating response curves, and clinical trials. It works, but it’s painfully slow and expensive. Meanwhile, patients with both chronic and acute diseases are continually given drugs with known efficacy. This has been going on for a very long time. Certain cost conscious elements of the health care system — health insurance companies — keep detailed records of this information on a per-person basis. I called up my prescription benefits provider last week and they provided me a copy of my historical prescriptions without a problem. I assume this is true of most, if not all, providers. I think these data could be very valuable.

For instance, I have (although there is no evidence yet of recurrence) a rare disease called Chordoma. If a sample of the Chordoma population’s drug histories were collected, certain inferences could potentially be drawn. Given known incidence rates for diseases, you have certain expectations. If you know 1:100 people taken should have had rheumatoid arthritis¹ but they are under-represented or missing, two things are possible²: people with Chordoma do not get rheumatoid arthritis, or people with rheumatoid arthritis take drugs that might incidentally treat Chordoma.

Does the sample of patients’ drug histories conform with expectations? If not, why? Considering the cost of clinical trials, this seems like it might be a low-hanging fruit, especially for patient-led non-profit research/advocacy organizations. I recognize that a straight-forward pre-existing drugs regiments are unlikely to be curative, but they may hint at promising avenues of exploration. (For example, does the group taking a drug for RA seem to have slower disease progression.) Such hints might not be possible to derive from in vitro and animal models.

Note: I am neither a medical researcher nor a medical doctor. I am just a guy whose reach exceeds his grasp. I took a cursory glance at PubMed and asked around to a few researcher friends of mine to see if they knew of anyone who tried what I suggested. So far, I found no evidence that this has been attempted. If someone wants to correct me, please leave a comment. If you know someone who might be able to correct me, please forward them this blog post. Thanks.

1. Adjusted for Age, Ethnicity, Sex, etc.
2. Well, several things, but two relevant to my argument.

For most of my life, I have avoided dating and relationships. In high school, this was a consequence of my inability to play the necessary games. (Although, I attributed it to hopeless romanticism, the justification of choice for most awkward teenagers.) In college, I learned to play the games — very well. However, I continued to not date. The adage, “why buy the cow if the milk is for free” applied. I enjoyed college.

Towards the end of college, I started to think differently. I wanted to form relationships of the non-casual variety. Many people I know date merely to be in a relationship. They are not necessarily wild about their partner, they just prefer not to be alone. This doesn’t interest me. In my case, I would date only if I found someone great. I think (very) highly of myself; I would have to think highly of the girl I would date as well. And that is just the beginning of the criteria. Physical attraction and emotional compatibility are not minor issues. Such girls are rare, but they have graced my path before.

As mentioned previously on my blog, I had a rare type of cancer for which there is still no cure. I was treated surgically to remove the macro-tumor, but microscopic remnants undoubtedly remain and, after enough doubling, it will reassert a claim on my health. Things are not likely to end well. Given this, I arrived at my dating conundrum. If I was to find a girl that I respected; a girl that I was attracted to; a girl whose company I enjoyed; a girl that I wanted to invest my time and emotions in…what happens when I get sick again? I initiated steps to nullify the Chordoma threat, and others subsequently (greatly) exceeded my efforts, but as of right now, I think the probability of tragedy exceeds that of happily ever after. This introduces my paradox, my Catch-22. The purpose of dating such a girl as the one sketched above is to allow myself to be swept along the currents, hoping to arrive at a place of deep love. (I wasn’t trying to be poetic; the preceding statement was as precise a summary on the progression of relationships as I could give.) If this point came — if I grew to love her deeply — I would want to protect her from harm and suffering. However, given Chordoma, her suffering would likely be a result of my sickness and death. Her suffering would be deeply emotional. Furthermore, as it is in a woman’s best interest to find a man in her youth — for obvious reasons — it would continue to weigh on her for a long time. Ergo, the best way to protect my as of yet unidentified and pursued love, is to never pursue her.

I realized this years ago but it is growing more difficult to maintain my restraint. For one, it’s easy to not pursue women romantically when you are young, dumb, and…in college. I might have justified my Dorian Gray phase as a consequence of this realization, but truthfully it wasn’t. I was enjoying myself in the way that a geek turned college man-whore would. Now, however, I am less interested in the simple pleasures (in isolation, at least.) Over the past year or so, I’ve started dating a few women, only to realize I was being selfish. I think I wanted the intimacy of a relationship, without the woman’s investment. This was stupid because it’s not a possibility.

To a small degree, I’m writing this hoping that someone will point out an obvious flaw. I’ve thought of some, but they are weak. I assume people smarter than myself have offered similar arguments; I’d like to read them. However, for the most part, I wrote it to solidify my resolve and understanding. That’s why I write most of my blog posts and accounts for my readership of about six people.

In the meantime, I’ll continue to do what I consider the rational course of action: try to fund a cure.

P.S. I have previously  discussed my dating catch-22 with other people who had/have Chordoma; it was not pleasant. Most are deeply offended so I no longer bring it up with them. If someone from that world happens to read this post and is offended or saddened, I’m sorry. It’s not my intention.

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Chordoma Sucks

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.