Science Shakedown

Why can’t patients have unfettered access to biomedical research?

By Misha Angrist

Among my many blessings is the fact that both of my octogenarian parents are alive and, knock on wood, relatively healthy. But like most folks their age, they struggle with various health problems.

As a teenager, my father contracted polio during an epidemic. During the early 1950s there was no polio vaccine and no obvious treatment. Thankfully, his case was sufficiently mild that after weeks of bed rest and physical therapy, he recovered. But now, many decades later, like many polio survivors, he suffers from post-polio syndrome, a gradual weakening of the muscles that were affected by the original polio infection. In my dad’s case, his ability to swallow has been severely compromised — just as it was 65 years ago. “It is like being visited by a long-lost relative whom you had hoped to forget,” he says.

For him meals are time-consuming and occasionally scary affairs; my mother is now well versed in the Heimlich maneuver. While neurologists and ENT researchers have put forth hypotheses as to what’s going on, no one understands exactly why post-polio syndrome occurs at all, let alone why it happens many decades after the patient had polio.

The “why” is an academic question, which is fine, but it is not the main interest of my parents or other post-polio sufferers. What they want is relief. My father has tried Botox and a laundry list of exercises, thus far all to no avail.

Not long ago I did what any son with an internet connection would do and took a crack at seeing what the medical literature had to offer by searching for “post-polio” and “dysphagia.” Short answer: not all that much. I found a smattering of papers, which I downloaded and read.

But even those few papers gave me leads, and my father at least a little bit of hope. I found names of specialists who had written about post-polio syndrome and swallowing difficulties decades earlier; some of them were still around. My parents suddenly had new specialists to contact and potential new treatment approaches to pursue.

This experience was a profound reminder of another way in which I am blessed. As a faculty member at a university with a major academic medical center attached to it, I have almost frictionless access to the vast majority of the world’s medical literature. My university’s library spends hundreds of thousands of dollars on journal subscriptions. Because of that, had I infinite time (and better eyesight), I could read millions of papers about thousands of subjects — all for free and almost all right at my fingertips.

No one, especially a taxpaying parent coping with a devastating illness and trying to learn more about it, should be shaken down for 40 bucks for the right to read a paper about their child’s disease.

Patients and caregivers wanting to know more about their particular medical condition of interest, but without such academic affiliations, lack the same access that my colleagues and I have. Yes, sometimes they can get the papers they seek for free online, especially if those papers have been published in “open access” journals. Sometimes they can petition the author to send them a PDF and he or she will respond. Sometimes they can ask an academic who does have access for help. And if they’re on Twitter or Facebook, they can broadcast what they’re looking for into cyberspace with the hashtag #icanhazpdf.

But for whatever reason, sometimes these strategies don’t work. And of course, they wouldn’t be necessary at all had the seekers not first gone to the journal’s website and bumped into a paywall. Before allowing a “civilian” to read a paper, a journal might ask for a few dollars … or $50. Access can be for a brief “rental” period or include your very own PDF to keep forever.

But that it happens at all feels cruel and exasperating. In the words of the late George Harrison, “it’s all too much.”

Let’s be clear: Publishing a journal, even one that lives only on the internet, costs money. Journal editors have to curate, filter, edit, and solicit peer reviews for the papers they receive. And they have to eat.

But their employers also profit handsomely, bringing in an estimated $10.5 billion in journal revenues in 2013. At that time, at least one of the largest publishers was realizing higher profit margins than Apple. Moreover, while they sell advertising, they also get much of their content (the results of publicly funded research) and labor (peer review) for free.

Again, as with drug prices (which I ranted about in the last issue), the core problem is not how much money the companies are making, but rather access (or lack thereof) for the end- user. To be fair, even traditional publishers are increasingly embracing open access (in which the authors pay the journals a fee to help cover the journals’ costs and make papers freely available).

But subscription-based publishing is too lucrative to let go; according to open-access scholar Martin Paul Eve, the cost of research journal subscriptions has risen by 300 percent above inflation since 1986, while academic library budgets have gone up by only 79 percent over the same period. This means that, in way too many cases, papers remain behind expensive paywalls. No one, especially taxpaying parents coping with a devastating illness and trying to learn more about it, should be shaken down for 40 bucks for the right to read a paper about their child’s disease.

A few years ago, Alexandra Elbakyan stepped into this fray. Elbakyan, then a 22-year-old Kazakhstani graduate student in neuroscience, was frustrated by the paywalls and set up a site to house pirated research papers. Since its start as a small side project, Sci-Hub now hosts 60 million research papers. Elbakyan has been called a “hacktivist” and “the Robin Hood of Science.”

She is also a wanted criminal. Last summer, Elsevier, among the largest and most profitable of the traditional scientific publishers, won a $15 million judgment against her (and other sites, like Library of Genesis and BookFi) in the New York District Court for violation of its copyrights; the American Chemical Society has also sued her and won. For her part, Elbakyan remains on the run.

The existence of Sci-Hub encapsulates many of the problems with the current system: well-intentioned taxpayers who subsidize science are denied easy online access to the peer-reviewed literature by traditional publishers’ paywalls. Recently, when I asked one patient advocate (who did not want me to use her name) about where she gets her papers, she wrote to say, “I LOVE SCI-HUB.”

Sci-Hub makes millions of papers freely available to anyone, but, under U.S. copyright law, it is a criminal enterprise. If Sci-Hub fractures the current system and that leads to something better in its place, then maybe it will have all been worth it. But that’s a big if, and a big maybe.

So where does this leave us? Some have predicted the end of subscription-based science publishing, but we’ve heard this prophecy before. For now, I’d encourage people to shine a light on egregious paywalls. Can’t get a hold of a journal article without forking over your credit card number? Tell your social media network and your elected representatives. Meanwhile, Sci-Hub is not your only option; a group known as Open Access Button is working to “instantly, legally find you access to the articles and data you need.” There’s also a free browser extension called Unpaywall that attempts to do the same thing. Try them.

My fondest hope is that one day soon paywalls will go the way of the pay phone. Patients and their caregivers are often utterly desperate to find reliable information about the conditions that affect them and their loved ones. If we cannot — or will not — grant them access to it, then we have failed them … and ourselves.