Profiles of Progress: Members of Congress Fighting for Cures

Released: 2010

Representative Brian Bilbray

It’s heartbreaking to lose a parent to disease. It’s devastating to lose a child. Representative Brian Bilbray has suffered both.

“I was in 10th grade when I lost my father to cancer. I watched what that hideous disease can do, not just to my father, but to the entire family.

“But I have to say that it was when I lost my first son to crib death, SIDS, that I received the biggest wakeup call about how important research is,” Rep. Bilbray said.

These experiences inspired Rep. Bilbray’s longstanding commitment to helping others avoid such tragedies by supporting federal government’s investment in biomedical research through the National Institutes of Health (NIH). “Some of us have to stand up and be willing to take the heat to do the right thing if we want to see the miracles in the future,” he explained.

What heat? Rep. Bilbray has long upheld an equally strong commitment to fiscal conservatism – which means he usually advocates for less government spending, not more. But biomedical research is an exception. The federal government has the scale and ability – and, Rep. Bilbray believes, the constitutional obligation — to invest in the nation’s research foundations. With an annual budget of more than $31 billion,1 NIH is truly able to spur the nation’s medical research enterprise. It’s from there that private investment and research institutions may help build tomorrow’s miracles.

The federal commitment must be also be sustained over long periods of time. Only sustained investment, says Rep. Bilbray, will allow future generations to live better. From 1998-2003, Congress doubled NIH’s budget2. But at the end of that period, funding essentially flatlined – and, apart from a one-time infusion of Recovery Act funding — has remained flatlined ever since3. For this reason, Rep. Bilbray calls the doubling, in which he admits his strong involvement, “well intentioned,” but unsustainable over the longer-term.

Instead, he says, the solution must be a collaborative, non-partisan effort to find a truly long-term, even generational, strategy for NIH that will encourage the entire biomedical ecosystem to thrive.

“We need to work together, Democrats, Republicans and Independents. We need to work as Americans to find the level of commitment that the federal government can make so that private investors and researchers can know that there is long-term involvement. And that in turn allows them to know what long-term commitments they need to make,” said Rep. Bilbray. Additionally, Rep. Bilbray believes we must reform the federal government to ensure these research breakthroughs are translated to innovative, lifesaving products for our citizens. This includes reforming the Food and Drug Administration so that we can bridge the infamous “valley of death” and translate research from bench to bedside.

Those commitments are essential goals for Rep. Bilbray as a seasoned Congressman, but also as a son and father. There have been great strides in cancer treatment: the overall death rate has steadily declined since the early 1990s and the five-year survival rate is now 68 percent, up from 50 percent in the 1970s4. And researchers know today that cancer isn’t just one disease, but hundreds which we must fight with precision at the molecular and genetic levels. That said, cancer is expected to take 569,490 American lives this year, just as it took Bilbray’s father.

And while significant studies have given parents strict guidelines on how to avoid SIDS, the leading cause of this fearsome disease remains a mystery.

In sum, much has been accomplished, but Rep. Bilbray believes there’s much more we can do.

“I worry that we take our modern miracles for granted, because this is something we must not do. Who would have thought in the ‘60s that our daughters could get a vaccine to avoid cervical cancer? There’s a lot of long-term investment and a lot of good science that makes these miracles possible. And that means if we want to see them in the future, we’ve got to be willing to do the research today.”

Doing the research starts with significant, sustained investments in the National Institutes of Health. Regardless of political views or economic schools of thought, Americans agree upon the need to continue investing in biomedical research. Because disease impacts every one of us – including the men and women in the US Congress. For Rep. Bilbray, we have a clear call to take action for our collective future to ensure significant and sustained investments in NIH.

“It’s not an abstract. We’re talking about real lives, real people, and real opportunity to avoid future tragedies…so it’s not what you do in the next year or the next election. It’s what you’ve done by the time your grandchildren show up. That’s going to be the real test.”