Washington, DC - Today, Congressman Thomas J. Rooney (FL-17) and Congressman Juan Vargas (CA-51) introduced the Rare Disease (RaD) Fund Act of 2015 (H.R. 3731). The creation of this Fund would transform the life sciences industry by implementing a novel financial structure for early stage development. The bill seeks to act as a bridge to the ever-widening funding gap that currently exists between basic research and clinical development.
“The life sciences industry desperately needs help to overcome the “valley of death”,” said Rep. Vargas. “Recent advancements in genetics and biomedicine are leading to incredible research projects and novel therapies with the possibility of changing the lives of many patients who suffer from rare diseases. However, the current lack of financing is leaving many promising therapies gathering dust when they could be saving lives. The RaD Fund would allow for a larger number of biomedical projects to be funded, and thereby increase the likelihood for new cures to be found faster, more efficiently and with greater efficacy.”
The legislation would allow the National Institutes of Health (NIH) to establish a privately owned and operated investment fund for rare diseases therapeutics. The Fund would invest in and develop early-stage (prior to the third stage of the Food and Drug Administration’s approval process) rare disease therapeutics. The NIH would serve in an advisory capacity and would also have the authorization to provide technical services and sell intellectual property to the RaD Fund in exchange for an equity stake in the company.
“The creation of this Fund is a necessary step to combat rare diseases and help individuals that are fighting them,” Rep. Rooney said. “Medical innovation shouldn’t be hindered by lack of funding and it is our responsibility as Members of Congress to help accelerate biomedical innovation in the capacity that we can.”
A group of researchers, led by Dr. Andrew W. Lo, a Professor of Finance and the Director of the Laboratory for Financial Engineering at the MIT Sloan School of Management, conducted a simulation demonstrating that a successful megafund model for rare diseases could be implemented with just $400 million in capital and as few as ten compounds.
Congressman Tom Rooney represents Florida’s 17th district. Now in his fourth term in Congress, he sits on the prestigious House Appropriations and Intelligence Committees, and serves as a Deputy Republican Whip. Throughout his time in Congress, he has focused on maintaining America’s national security, supporting Florida farmers, and improving access to critical health care services for our nation’s returning troops and veterans. Most importantly, Tom and his wife Tara are the proud parents of three young sons, Tommy, Sean and Seamus.
Congressman Vargas represents California’s 51st Congressional District which includes the southern portion of San Diego County, all of Imperial County and California’s entire US/Mexico border. Vargas was first elected to the U.S. House of Representatives in 2012 and is currently serving his second term in Congress. He represented the 40th California State Senate District from 2010-2012, the 79th California State Assembly District from 2000 – 2006 and served on the San Diego City Council from 1993 – 2000.