In December 2002, a Belfast teenager made world headlines after his father, Don Simms, won him the legal right to access an experimental drug. Jonathan Simms had been diagnosed with variant Creutzfeldt-Jakob disease (vCJD), a cruel and fatal neurodegenerative condition that gives sufferers an average of one year to live.

After receiving the drug pentosan polysulfate, Jonathan lived for another 10 years, defying all medical expectations. The court ruling made medical history: until that point the drug had only ever been tested on animals, and the legal decision opened doors to treatment for other patients.

Key to Don Simms’s success in the courts was that he had been able to access the latest medical research findings on his son’s disease online, which was how he heard about the new drug.

It’s a story often retold by Graham Steel, a former vCJD patient advocate and long-time campaigner for open access science – the principle that academic research papers should be made freely available to everyone.

Around the same time as the Simms case, Steel made it his mission to gather and disseminate relevant research papers to other vCJD sufferers after his brother, Richard, died from the disease. “That was 18 years ago,” he says. “Yet there are still the same barriers stopping people from reading about research – from learning about the treatment they need.”

In other words, hiding research papers behind a subscription paywall – as is the case for an estimated two-thirds of all research – could be killing people. There are countless examples of how failure to share science openly can have a devastating impact on public health.

It’s happening now: the outbreak of coronavirus in China prompted the director of the Wellcome Trust to call for medical findings to be shared freely and widely to prevent the spread of the disease and improve treatments for patients. “Access to the most up-to-date information based on the most robust data possible helps countries understand the likelihood of future spread of the virus,” he says.

The consequences of keeping research locked away can be devastating. In 2015, a group of senior health researchers, including the chief medical officer of Liberia, published an open letter in the New York Times declaring that the Ebola pandemic that killed more than 2,200 people could have been prevented if it weren’t for paywalls, given that an article published in a subscription-only journal in 1982 had warned of the risk. But the journal’s closed access model meant the paper’s reach was limited: medics on the ground were not sufficiently warned and further research was not undertaken.

So why is it taking so long to transition to making research content free? For one thing, the publishing community is yet to agree on how to fund such a system. If readers or the institutes they work under are no longer paying to access papers, profit must be made elsewhere – most commonly by charging the authors themselves a fee for the cost of publication.

Others argue that the entire research community has been slow to transition because of a lack of interest or understanding. According to Steel, a common misconception remains that the general public has no need to access research, with some academics claiming that medical studies present complex findings that are at best useless to the common reader, and at worst misinterpreted.

“There’s a lot of misinformation out there for ‘cyberchondriacs’ to find, but I would say: let the reader decide,” counters Steel. “By stopping patients from reading scientifically sound, peer-reviewed papers in full, you’re really just leaving them to nothing but the rubbish that exists online already.”

Campaigners have argued for open access since around the beginning of the internet. Progress has been made: current estimates put the global proportion of openly accessible research at 37%, which is a mark of significant progress. But it’s one that still leaves a huge bulk of work closed to the majority of readers, particularly those working in poorer countries, where institutions struggle to afford costly academic journal subscription fees.

But change is afoot. Starting this year, Wellcome will require any medical research it is funding which is considered to offer possible public health benefits to immediately be published on an approved open access platform.

The wider open access movement has also shifted a gear since September 2018, when a group of European research funders unveiled Plan S: an initiative now backed by more than 20 public funding bodies across 13 different countries, including the UK’s public funding agency, UK Research and Innovation. According to the policy, researchers undertaking work financed by taxpayer money must make it available to read online for free at the point of publication.

The deadline for this was recently extended from January 2020 to 2021, after smaller publishers complained that they would be unable to transition their business models in time. But Robert-Jan Smits, Plan S’s founder and former special envoy of open access for the European Commission, says this was the point. “Having a short deadline forced people into action: I threw a stone in the pond and as a result made not just some ripplings but mega waves.”

While some resistance to the plan remains, and there are questions to be resolved about how the policy can work internationally, negotiators say they have witnessed a shift in attitude over the past few months. “For a long time the debates have have been around why open access is a good thing. By and large that is now accepted, and the discussion is centred around how we can make it work for everyone,” says Liam Earney, of research and education consortium Jisc.

Earney negotiates open access publishing deals that will help both publishers and academic bodies in the UK make the transition financially viable. He is confident an agreement will be reached: “It benefits everyone to work together.”

He adds: “As governments make data-informed decisions that will impact the rest of the world, having research more easily available to policymakers can only be a good thing. The grand challenges that we are trying to address around climate change, countering false information and facts, will be better served if the best research – and crucially the data associated with it – is openly available.”