Rep. Van Hollen, Alex Silver address research funding outlook, venture philanthropy
Transforming the current disease-specific non-profit funding model and the outlook for FY16 budget levels for research were among the topics addressed by Alex Silver, chairman and co-founder of EB Research Partnership and Representative Chris Van Hollen (MD-08) at Research!America’s Annual Members meeting held at the Ronald Reagan Building in Washington, D.C. on March 11.
Silver became an advocate for research after learning that his son Jackson, who is now seven years old, was diagnosed with a severe form of Epidermolysis Bullosa (EB), a debilitating and potentially deadly genetic condition that causes internal and external blisters all over the body causing constant pain. In addition to the emotional hardship, Silver said he was projected to spend more than $1 million dollars on the cost of bandages alone by the time Jackson is ten.
“Watching your child suffer the way I do and knowing that the clock is ticking, makes inaction the riskier choice,” he said.
Silver urged disease-specific non-profits not to shy away from adopting a “Venture Philanthropy” model to reinvest profits from commercial investments into funding more research that will lead to new treatments. He spoke to the value of partnering with commercial entities, other non-profits and members of the community.
“You can fund the world’s best minds, and they can conduct the world’s best and promising research but if their ideas can’t make it to patients, you are wasting the most precious resource of all, time,” he said. “Time for somebody who suffers with a rare condition has a whole new meaning than it does for somebody with a normal life expectancy.”
While Silver focused a majority of his remarks on public-private partnerships, Representative Chris Van Hollen zeroed in on the value of investing in basic research. Rep. Van Hollen expressed his discontent with current funding for basic research, noting that the purchasing power of the National Institutes of Health is 20 percent below what it was in the early 2000s, “In real dollar terms, we are not just treading water, we are falling behind everyday,” he added.
Rep. Van Hollen said we are sending “mix signals” with a national commitment to investments in STEM, but lack funding for research. He also spoke of the numerous reports demonstrating that our nation’s global leadership in research is in decline, “The warning signs have been flashing now for a number of years and we need to take action.”
Rep. Van Hollen plans to release a budget in FY16 that mirrors the President’s budget which calls for $35 billion more for non-defense discretionary spending over the sequester cap and $35 billion for defense.
“Between now and April 15, we have a lot of work to do to make sure there is enough room in this budget, within the non-defense discretionary part of the budget, to achieve the levels of investment in places like NIH that we need, so that we don’t leave more discoveries behind and we don’t leave an important part of our innovation economy behind,” he remarked.