Citing their intellectual-property rights, a number of charities that support drug development have been angling for a share of royalties from the sales of new treatments, Nature.com reports.

In recent years, many so-called "venture philanthropies" — including the Cystic Fibrosis Foundation, the ALS Association, and the Muscular Dystrophy Association — have invested in and in some cases managed early-stage high-risk medical research projects, hoping to reap a financial return when and if the research is commercialized. According to attorney Ken Schaner, the payout in such situations can be as much as $1 billion.

Investing in intellectual-property rights also can be a boon for these organizations when a developer decides to drop a project. For example, after Altus Pharmaceuticals said it could no longer finance a phase III clinical trial of a recombinant enzyme designed to treat pancreatic deficiencies in people with cystic fibrosis, the Cystic Fibrosis Foundation, which had invested about $25 million in earlier trials, grabbed the license and shopped it around. Eventually, Indianapolis-based Eli Lilly and Company ended up with the project, and the foundation sold off its royalty rights, putting the proceeds into another effort.

But while charities in the medical research field have come to understand the value of royalties and intellectual property, many still give the issue short shrift, Schaner told Nature.com. "Often, charities don't think past the first year or two when the grant is being made," he said. "They're so accustomed to clinical failures that they don't put enough emphasis on, 'We might have a success, and what happens then?'"