- bloomberg.com/news/2011-09-07/mogul-using-own-100-million-in-race-to-cure-daughter-prompts-novartis-aid.html
- bloomberg.com/video/74900090/
- bloomberg.com/news/2011-11-29/roche-enters-race-to-cure-genetic-disease-with-490-million-agreement.html
Provide names of other journalists involved.
Alex Nussbaum
List date(s) this work was published or aired.
It was published in the October 2011 issue of Bloomberg Markets magazine, and released on the Bloomberg Professional Service and online at Bloomberg.com on Sept. 7.
Provide a brief synopsis of the story or stories, including any significant findings.
Langreth and Nussbaum profiled wealthy entrepreneurs racing to find cures for their children with horrifying genetic diseases. The story was the first to illustrate the rapidly expanding role that rich philanthropists have in early drug research, as drug companies and government funders cut back amid the global economic slowdown. These rich funders use their business savvy to advance the research, forcing academic rivals to collaborate and enticing drug companies to work on child diseases they once ignored. The story focuses on the efforts of hedge fund founder Dinakar Singh to find a treatment for his 11-year-old daughter, who suffers from a crippling and untreatable genetic disease called spinal muscular atrophy. No drug companies were working on the illness when she was diagnosed a decade ago. Singh has spent $100 million of his own money to change this, developing a set of tools that companies can use to test their drugs. Several drugs are about to enter human trials as a direct result of his foundation’s work.
Explain types of documents, data or Internet resources used. Were FOI or public records act requests required? How did this affect the work?
Langreth and Nussbaum poured through dozens of scientific papers to describe complex genetic diseases in terms that readers can understand. They searched Internet and Bloomberg databases to compare spending of government agencies, philanthropic groups, and drug companies on disease research. They found that for some diseases including autism, funding from rich private donors now nearly matches what the National Institutes of Health spends.
Explain types of human sources used.
Langreth and Nussbaum followed hedge fund manager Dinakar Singh and his family for more than a year to profile his foundation’s ten-year, $100 million effort. They spoke with other wealthy parents about their attempts to help their children, whose illnesses ranged from a four-year-old boy’s rare genetic condition in which his skin was blistering and shearing off to a family that decided not to “run away” from their son’s schizophrenia and instead “run toward it” by funding brain research. The writers interviewed dozens of researchers and gained exclusive access to internal drug company meetings at Novartis, which began developing a drug based on work of Singh’s SMA Foundation. This helped dramatize early stages of the research process that normally are shrouded in secrecy. They interviewed philanthropy experts who confirmed the trend toward private donors taking a more hands-on role in drug research.
Results:
Since the story, big drug company interest in child diseases has intensified. In November, the Swiss drug company Roche Holding signed a $490 million deal to develop to one of the drugs featured in the story in unusual three-way collaboration with Singh’s foundation. Multiple big drug companies are now bidding to license another drug featured in the story from Isis Pharmaceuticals. It was slated to begin human tests in December 2011.
Follow-up (if any). Have you run a correction or clarification on the report or has anyone come forward to challenge its accuracy? If so, please explain.
Scores of readers from around the world wrote in to say they were moved by the story. No one has challenged its accuracy.
Advice to other journalists planning a similar story or project.
Details are key to telling a story. The writers’ ability to weave a compelling narrative in a complex feature about science and medicine hinged on the human details their reporting uncovered. Langreth illustrated the Singhs’ initial reaction to their daughter’s diagnosis by reprising the phone call where they got the news. He portrayed Arya’s courage by reporting on her plans for a bake sale and showing her itching to scoot off her in her wheelchair to play with her siblings. The story revealed Arya’s fears and hopes for her situation by quoting from a homework assignment where she envisioned a goddess with a puppy face whose job was to cure illness.