'People can't learn about treatments they need': why open access to medical research matters

Campaigners have argued for open access to scientific research since the dawn of the internet - so why is it taking so long?

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.