February 7, 2008 | Read Time: 2 minutes
Kathy Giusti runs the Multiple Myeloma Research Foundation, a nonprofit group she founded to fight the lethal blood cancer, like a business, writes The New Yorker (January 28). Her staff includes four scientists who track myeloma research around the world, advising her on which projects are most likely to succeed and thus deserve money.
“We try to get academics to work like businesspeople,” says Ms. Giusti, a former pharmaceutical-company employee who started the organization in 1998 after receiving a myeloma diagnosis. “Money gives you power to drive people’s behavior.”
Ms. Giusti’s organization is one of a growing number of medical charities that apply business solutions to their work, writes the magazine.
In 2002, Scott Johnson, a former chief executive of several Silicon Valley start-up businesses, created the Myelin Repair Foundation, with the goal of furthering academic research into treatments for multiple sclerosis, from which he suffers.
Susan G. Komen for the Cure, which fights breast cancer, is considering spending $35-million toward an initiative called Promise Grants, which would require grantees to share data and fulfill strict requirements.
And Ms. Giusti says she has been contacted by several other new medical organizations, including the Lance Armstrong Foundation and ABC2, which was created in 2001 by Steve Case, the co-founder of AOL, and his brother Dan.
Ms. Giusti’s foundation, which has raised more than $90-million since 1998, focuses on fostering greater collaboration among institutions. A consortium she formed to meet that goal now has 13 members.
The scientists submit their research proposals to a steering committee for approval and publish their results jointly. In exchange, they receive access to a tissue bank of myeloma blood cells and bone marrow, as well as administrative and other support for lab tests and clinical trials.
The approach has drawn some criticism, however, even from those scientists who have chosen to participate.
Several researchers in the consortium complained to The New Yorker that the foundation issued too many press releases, even when there were no new scientific advances to report, and said that Ms. Giusti exacted too much control.
“We’re still learning as we try to change the system,” Ms. Giusti says. “To understand how to cure patients, we are going to have to break down a very broken system. And that’s not going to make us loved by everybody.”
Forbes magazine (January 28) also explores the growing number of wealthy business executives and celebrities who are focusing on finding cures for their own medical afflictions.
It examines the efforts by Andrew Grove, the co-founder of Intel, who has committed $22-million to Parkinson’s research and has promised a $40-million bequest to the Michael J. Fox Foundation for Parkinson’s Research.
The stories are available at http://www.newyorker.com and http://www.forbes.com.
