New Delhi: The year was 2015, and Vlad was dying. He was diagnosed with an extremely aggressive form of lung cancer. Surgeries, radiation therapy, targeted drug therapy, all had failed. Hope, however, presented itself in the form of a publication documenting a study involving a peptide vaccine conducted on a single patient in China, which showed significant reduction of the tumour size in the patient. This remarkable result notwithstanding, the fact that the Chinese patient in question had actually not survived was enough to convince Elen, Vlad’s wife, to decide and give the study a try. She secured information about the described peptide and the other details pertaining to the treatment. Now, all she needed was a person willing to manufacture the peptide. She contacted a lab, which agreed to create the vaccine. Vlad has been on this vaccine, alive and without any side effects, at least as of now. This may sound like a page out of a Robin Cook science fiction, but it is an actual user’s do-it-yourself (DIY) alternative to expensive, not-yet-clinically-proven treatments, popularly known as biohacking enabled by a set of Robin Hood-inspired “biohackers”.
This seemingly straightforward alternative, however, is fraught with difficulties, first, in terms of the technical know-how required for the treatment, then in terms of the risks associated with employing such untested technology and also the tricky right-to-try laws. But, when patients are terminally ill and are desperate to add time to their lives, they do not seem to mind treading this obstacle path.
Let us now turn our attention to the biohackers. Who are they really? Biohackers thrive in communities. Most biohackers are trained in science and work away in kitchens and make-shift labs with equipment readily available online. They seek problems and find easy DIY solutions. Take the case of one of the most successful biohackers, Laufer, who published his own DIY version of EpiPens, which he concocted for $30 instead of the $600 price tag quoted by Mylan. That it was timed well with Mylan’s pricing scandal made his version of the EpiPen catch headlines everywhere. Successes like his and others are egging this movement forward.
Though the safety and efficacy of such biohacking remain a cause of concern with the United States’ Food and Drug Administration, the choice of affordable medical care suddenly seems very viable. The black box of what happens in a pharmaceutical lab suddenly seems decipherable… at least to the biohackers and their community of believers.
Though biohacking seems exciting to the lay, experts rightly caution against it. The pharmaceutical industry developed a complex regulatory environment in response to missteps in the decades of developing pharmaceutical solutions to human illnesses. To completely overlook the checks and balances that slow the process, but also ensure safety, might have consequences that we are still not ready to grapple with. When a dying Vlad sees a glimmer of hope, he dashes for it.
Steinar Madsen, the medical director of the Norwegian Medicines Agency, cautions against biohacking thus: “I very much doubt that the vaccine will work and it is not without danger, however small it might be. It may possibly trigger allergic reactions that may be severe. Also, autoimmune reactions cannot be entirely ruled out. On the other hand, I very well understand that patients would like to try a vaccine when all hope is out. Preferably patients should talk to their doctors so they at least know what is going on.”