With very little fanfare, something remarkable happened recently. The “Hookworm underground”—the international community of people treating their autoimmune and allergic diseases with parasites acquired on underground markets—made the pages of the journal Nature.
Nature is among THE preeminent scientific journals in the world, second perhaps only to the journal Science (although I’m sure some would argue that Nature is No. 1 and Science is No. 2.)
The mention came in the form of correspondence written apropos of an essay by Joel Weinstock.
Along with two gastroentorolgists at the University of Iowa—David Elliott and Robert Summers—Weinstock developed a parasite to treat inflammatory bowel disease in humans. I tell this origin story, which occurred more than a decade ago, in Epidemic.
A company called Coronado Biosciences is now trying to obtain FDA approval to bring the drug to market. If they succeed, the eggs from this pig whipworm (AKA TSO, or Trichuris suis ova) will be the world’s first regulated, multicellular probiotic—at least, I think they’ll be.
They’ll probably also be the first parasite whose introduction to your body to treat disease is COVERED by your insurance company.
In the Nature article, Weinstock explains how he came up with the idea, a tale I also tell in Epidemic. (It involves a lightning storm and an hours-long flight delay in Chicago.) He explores the new hypothesis that parasites may restore the mucus barrier and cultivate friendly microbes. All good.
Then two British scientists wrote in — Stephen Flowers and Michael Hopkins. They pointed out that, as was the case with HIV-positive people decades ago, individuals with these autoimmune diseases are, as a community, looking for help anywhere they can find it. Some are self-infecting with parasites.
I know this, of course—it’s covered in the book. The hundreds and perhaps thousands of people around the world who now deliberately carry parasites in their bowels know it. They walk among us. Many scientists who study parasite immunology know it, although their assessment on the movement runs the gamut from sympathy to outrage.
Now the readers of Nature know it.
Here’s what Flowers and Hopkins say:
We contend that using a pseudo-pharmaceutical process to evaluate helminth therapeutics — which typically costs millions of dollars and takes more than a decade to pass through clinical trials — is not the only way.
Individuals with chronic autoimmune disease often seek their own solutions, rather than wait for uncertain and complex approval processes or face unpleasant palliative therapies, side effects and surgery. Some UK patients with Crohn’s disease, for example, are sourcing helminths, gathering data and sharing their experiences through online forums (our unpublished findings). As in the development of early therapies for AIDS, user practice is — rightly or wrongly — being driven by extreme need and is moving faster than formal scientific understanding.
A different approach to helminth therapeutics might be to allow patients to help with development, using their insight and evidence in a revised model that better reflects patient behaviour and capabilities.
The authors are not MDs. Their specialty is not biology or gastroenterology. They study user-driven innovation, it seems.
So their championing should be treated with some caution. They probably haven’t internalized the long list of parasitic horrors, as any medical student might. And they don’t obsess over the Hippocratic Oath — do no harm — as doctors (we hope) do.
(Flowers has apparently given presentations on the underground at the Sussex Medical School. Interesting that it’s making inroads into medical schools.)
So here come two upstarts arguing that a community of people has moved faster than the slow pace and onerous regulations of The Science. Essentially citizen science is outpacing scientists’ science, they argue.
As a reporter, I have a conflicted appraisal of the movement. Without real, randomized, placebo-controlled studies, I think it’s impossible to determine if the treatment works, or what the negative side effects might be.
That said, I know that it has helped some individuals. People’s lives have been changed for the better because they self-infected with parasites.
It also HASN’T worked for some people. Those stories of failure almost inevitably get drowned out in the online discussions. That’s the worrisome aspect of a crowd-sourced movement. If scientists are prone to confirmation bias — seeking evidence that supports their own preconceptions — well, a crowd of desperately ill people seeking treatment from parasite vendors, and educating themselves online, is orders of magnitude more prone to this tendency.
I, of course, tried it, saw some benefits, but found symptoms to outweigh the benefits. It wasn’t worth the pain and malaise in may case. Others don’t have side effects. Some of that difference in response is clearly genetic.
The interesting question here, though, is can citizens push the science along?
Or better yet, can users establish a safer, cheaper, more reliable way to do what they do — a kind of user-regulated parasite exchange?
The idea is tantalizing. It also probably scares the feces out of regulatory authorities and MDs. But Flowers and Hopkins’ letters inevitably raises that question.
So, If I could wish something for the Underground, it wouldn’t be that they stop. Too many seem to benefit from self-treatment. Some might be dead or immobile without it (multiple sclerosis). Others might have undergone bowel resection surgery (inflammatory bowel disease). And if it’s all placebo, then God bless the special placebo induced by parasitic worms; it works where no other placebo could.
Here’s what I wish for the hookworm underground movement: that citizen users professionalize and regulate the process of “worm farming” and “worm therapy,” and that, if they must, they self-treat with medical oversight.
Some ideas: found a non-profit dedicated to the use of helminths; design standards for production and quality; delineate safety protocols; you could even articulate a “stamp of approval” for producers, criteria to comply with, akin to what’s happened with seafood or forestry products; placate regulatory authorities; recruit MDs and scientists willing to monitor and study patients as they self-treat; fundraise; and maybe most important, dole out grant money to scientists who want to study this. That’s where citizens can truly move science along. Many scientists are starving for funding. These non-profits could offer grants to study helminths and immune-mediated disease.
I also think people self-treating should be studied. As P’ng Loke’s seminal study shows, even case studies can generate new hypotheses and dramatically move science forward. These data shouldn’t be lost.
In sum, the underground movement could organize and become a force that dramatically influences the science to the benefit of its members. So far, the organization has remained underground. (Check out this open source Wiki, maintained by a helminth user.)
But it could move above ground, potentially spurring the science to move more quickly—as has occurred, say, in autism. See the Simons Foundation or Autism Speaks. For good or bad, these organizations fund lots of science. And to the degree that this funding helps illuminate the autism puzzle, they are moving the science along.
There’s no reason why parasite users couldn’t organize to exert similar influence.
