Rather than reporting on the news, or discussing topical affairs, I’d like to tell you a personal story. The thesis will be, of course, that patents are painful in the long run. But I will not present real data. I will instead discuss a personal tale of how they have done a disservice.
It might be an appeal to emotion, and a straw man, and a personal bias, so I’m just gonna get those out of the way. This is an entirely personal experience.

By way of introduction, I have facioscapulahumeral muscular dystrophy (blessedly shortened to FSHD). That’s a long winded medical technical way of saying “my face, shoulder and upper arm muscles are fucked”. It’s not entirely accurate: my glutes, hamstrings, triceps, abs and pecs are also functionally useless. It’s not nice to live with. I find it difficult to garden, clean the the house, or merely get around. And it does make me so very, very frustrated; about quite a few surprising things. For example, my particular dystrophy is the only one to cause chronic pain, so I have had to learn to deal with pain management strategies.

In a way, it’s not so bad. I could have been born 30 years earlier, before we sequenced the human genome. The prospect for treatment is actually quite bright. As Carl Sagan (a personal hero) once famously observed “how lucky we are, to live in this time”. And I agree, but that does not mean that there is not work to be done. The luck of this time is held by few, and those few generally have no vested interest in this luck other than charging me for it.

Now, there are no cures. But there are treatments. In fact there is one that in clinical trials showed a 30% increase in muscle function. And not just for FSHD, it works for other conditions too. It was called MYO-029. A mono-clonal antigen that suppressed the expression of a gene known as myostatin. This gene downregulates the development of muscle tissue. It evolved because converting all food to muscle in a hunter gatherer society left you with no reserves for lean times. In the modern world, of course, this does not matter.

Wyeth pharmaceuticals developed this treatment and currently own the patent on it. They developed this 6 years ago as of the time of writing. They got it past first and second phase clinical trials. That means it’s safe and works. And it’s easy produce, as long as you have a bioreactor, you can make as much as they have horse serum for. Sounds ideal for stopping the gap and maintaining my quality of life. If only things were so simple.
Wyeth own the patent on it. This might be fine if they allowed others to use it, but they do not. And it also might be fine if they were going to sell it to me. But they won’t. The kicker? Muscular dystrophy is too uncommon to be profitable. But it does work, they took out a patent on it, and even registered “stamulamab” as a trademark. But Wyeth, for the next 25 years, will be able to tell me that they cannot be fucked developing a treatment for me. A treatment, that, if I could get the antigen I could make myself in a 2000$ bioreactor. And believe me, if I could get it I’d pay the 2000$.

Instead they sit on top of a patent. The most promising interim treatment to me and thousands of other MD sufferers around the world is being kept from us because it’s just not profitable to develop a product for so small a market. And it’s not profitable to give up the patent, because if someone tries to develop a pirate treatment, the remuneration is worth the litigation. That’s right, litigation is worth more than developing a product I could very definitely use.

For this reason I do not agree with patents. At the very minimum, no patents on biological entities like antigens, or chemicals, or software. And neither should you. It might not seem like patents are an important issue to you, but you don’t know who’s holding out on you. I have the dubious advantage of knowing how I’m being dicked over. And that’s the only difference, knowledge.

And now, if you’ll excuse me, I’ll be lying on the floor, drunk, exhausted, and angry because I could be less of a cripple and because there’s nothing stopping it other than rent-seeking protectionism.

Rather than reporting on the news, or discussing topical affairs, I’d like to tell you a personal story. The thesis will be, of course, that patents are painful in the...