Tag Archives: Francis Collins

A Weekly Advocacy Message from Research!America: The innovation imperative: It’s about Max

Dear Research Advocate:

This week, the research advocacy community suffered a tremendous loss. John Rehm, husband of Diane Rehm, passed away Monday. Diane, the host of The Diane Rehm Show on NPR, was honored by Research!America last year for her advocacy with the Isadore Rosenfeld Award for Impact on Public Opinion. Her late husband was a friend and longtime supporter of the Parkinson’s disease community. Our thoughts are with the Rehm family during this difficult time.

As you pursue your advocacy efforts, we hope the newest fact sheet in our series about the human impact of research will prove useful. Max Hasenauer was diagnosed at 22-months-old with X-linked Agammaglobulinemia (XLA). He is alive today because of research that enables him to receive infusions of antibodies every three weeks. While this technique has been life-saving, more research is desperately needed to address the profound challenges Max continues to face. Thank you for helping to ensure that Congressional Offices are seeing these fact sheets. We continue to receive positive feedback from the Hill thanks to your efforts to share the fact sheets broadly. Continue reading →

A Weekly Advocacy Message from Research!America: Talk is cheap; bipartisanship is priceless

Dear Research Advocate:

The doubling of the National Institutes of Health budget between FY99 and FY03 is an example of Congress at its most productive … and it hinged on bipartisanship. A small group of Republicans and Democrats recognized the power of medical progress, and they worked together to increase the budget baseline for NIH by nearly $11.5 billion. Without that doubling, and with the stagnation of virtually all non-defense discretionary funding that followed on its heels, which groundbreaking medical discoveries would still lie dormant? Which of those we hold dear would not be alive today?

Research!America Chair and former Congressman John Porter, who chaired the House Labor-HHS Appropriations Subcommittee, was one of a relatively small group of champions on that bipartisan team. On Monday, March 31, the National Institutes of Health held a dedication ceremony for the John Edward Porter Neuroscience Research Center. NIH Director Dr. Francis Collins, Senators Tom Harkin and Mark Kirk, renowned researchers and NIH alumni Dr. Gerald Fischbach and Dr. Steven Hyman, and other distinguished leaders paid tribute to Congressman Porter, acknowledging his staunch commitment to bipartisanship and his extraordinary contribution to advancing medical research. As Congressman Porter emphasized during his remarks, the two are not unrelated. The severe partisan divide in Congress has served to perpetuate the stagnation of NIH resources, both by compromising the deliberative process that is meant to inform the prioritization of appropriated dollars and by stymying tax and entitlement reform. Scientists must fight back, buoyed by the high esteem in which they are held by the public and armed with unique insights into the societal benefits of investing in research. View photos of the dedication ceremony here and our statement here. Continue reading →

A Weekly Advocacy Message from Mary Woolley: A 21st Century Sputnik Wake up Call

Dear Research Advocate:

The end of the year is a good time to think ahead and consider our nation at the end of the decade; how will we fare in the world order? My letter this week to the editor of the New York Times highlights poll data indicating that Americans don’t believe the U.S. will be the world leader in science and technology by 2020. This data reflects opinions grounded in numerous media reports on China’s accomplishments and determination to lead the world in science. Chinese accomplishments in space of late and their plans for a space station in 2020 ought to be a 21st century “Sputnik moment” for the U.S. It should be a wake-up call to policy makers: get serious about fueling our nation’s underpowered research and education infrastructure if we expect to compete globally in the years ahead. As NIH Director Dr. Francis Collins noted in his Washington Post op-ed this week, we’re at a “critical juncture” in biomedical research. Do we pursue opportunities derived from recent medical breakthroughs or squander them with insufficient funding for research?  Continue reading →

A Weekly Advocacy Message from Mary Woolley: Pope Francis is the Man of the Year; do you know what the Word of the Year is?

Dear Research Advocate:

Here’s a holiday surprise! I am not referring to the budget deal, but to the fact that Merriam-Webster’s 2013 word of the year — determined via the greatest increase in online searches — is “science.” I find this to be refreshing news, providing evidence that interest in science is growing, which in turn is an indication of substantial room for researchers and research advocates to contribute to public understanding and support of science. We appear to have an opportunity ready for the taking to overcome the “invisibility” problem that contributes to holding decision makers back from assigning a higher priority to science.

And speaking of those decision makers, we have a budget deal! While modest at best, it is a starting point for bipartisanship in serving the public’s interest. We can build on this foundation. Please add your voice, as funding is being determined by appropriators. Click here to urge your Members of Congress to support robust funding for NIH, NSF, FDA, CDC and AHRQ. This week, we’ve released our annual Health R&D Investment report, which could provide new context for your messages. The report shows some gains in philanthropy, industry, and voluntary health association support for research but notes woefully inadequate federal funding, especially given what’s at stake for our health and our economy. Continue reading →

A Weekly Advocacy Message from Mary Woolley: Moving from the Envy of the World to the Puzzle of the World

Dear Research Advocate:

NIH Director Francis Collins was recently interviewed for a Wall Street Journal article that would reinvigorate even the weariest research advocate. Dr. Collins captured the legacy and unprecedented potential of research for health, as well as the counterintuitive neglect of it, in a truly compelling manner. Dr. Collins made similarly captivating comments yesterday at the Washington Ideas Forum: “We’re going from the envy of the world,” he said, “to the puzzle of the world. Other nations are mystified that we have stopped following our own playbook — the one they are using now to drive their economy and improve health and quality of life for their own populations.”

Of course they’re mystified. Policy makers are setting Americans up for needless suffering and America up for decline. It’s past time to follow the lead of, for example, the Australian government; despite battling austerity, it has announced an increase in funding for the Australian Research Council’s research grants. And Australia is not alone — China is now on track to overtake U.S. spending (actual spending and as a percentage of GDP) within five years. Continue reading →

Budget sequester squeezes scientific research

Excerpt of an article by Ariana Eunjung Cha, published in the The Washington Post.

A year ago, Yuntao Wu was on a roll. The George Mason University researcher had just published a study hailed by the scientific press as “groundbreaking” that reveals why HIV targets only a specific kind of T-cell and, separately, found that a compound in soybeans seemed to have promise for inhibiting infection.

These days, Wu — one of thousands of scientists who lost his grant in the wake of sequester cuts — says he spends much of his time hunched over a desk asking various people and organizations for money.

The deep across-the-board cuts in government spending that took effect March 1 have sent shock waves through the nation’s research labs, delaying research and forcing layoffs.

The budget for the National Institutes of Health, the world’s largest funder of biomedical research, shrank 5.5 percent. The National Science Foundation budget was trimmed by 2.1 percent. Research funding for the Centers for Disease Control and Prevention, NASA, the defense and energy departments, and other parts of the government that conduct research also were cut significantly.

The sequester has affected all parts of the government but the impact has been especially painful to those in biomedical research, where federal investment in inflation-adjusted dollars has decreased every year since 2003.

Describing the scientific and medical community as “deeply demoralized,” NIH Director Francis Collins said in an interview that the budget cuts are delaying innovation and resulting in more American lives being lost. Continue reading →

A Weekly Advocacy Message from Mary Woolley: A “dark future for science?”

Dear Research Advocate:

Although Congress officially returns next week, many Members are back in Washington as the debate about the crisis in Syria commands center stage. Members also face looming fiscal deadlines, with only nine legislative days scheduled in September to act on those and a large backlog of other legislation. Given all this, it is not hard to predict how Congress will handle the long- or short-term budget resolutions, debt ceiling, the future of sequestration, tax and entitlement reform, and a myriad of other interconnected items: They will put off decision-making.

Thus a continuing resolution (“CR”), extending FY13 budgets, looks likely, once again kicking the can down the road and, in doing so, kicking patients and researchers alike into the ditch. And things will be worse than the terrible FY13 numbers, given that the Budget Control Act mandates less discretionary spending in FY14 than in FY13 — almost certainly prompting agencies to further decrease their spending while waiting for what might well be a still-lower final appropriations bill (more details here.)

This adds up to “a dark future for science” according to NIH Director Francis Collins. He and other leaders of science believe that the nation is increasingly underprepared to meet existing — not to mention emerging — health threats. Now is the time to hold Congress accountable for avoiding a dark future by making your voice heard. Click here to send a message to your representatives that medical research at NIH, CDC and our other health research agencies must be championed in the upcoming fiscal debates — not cut, not put on hold, but prioritized, championed. After participating online, magnify your voice as a broad coalition joins forces on September 18 to participate in the American Association for Cancer Research’s Hill Day, urging Congress to champion the National Institutes of Health. Continue reading →

The sequester’s a public health hazard

Excerpt of an op-ed by columnist George F. Will, published in The Washington Post.

“The capacity to blunder slightly is the real marvel of DNA. Without this special attribute, we would still be anaerobic bacteria and there would be no music.”

— Lewis Thomasgeorge_will

The pedigree of human beings, Thomas wrote, probably traces to a single cell fertilized by a lightning bolt as the Earth was cooling. Fortunately, genetic “mistakes” — mutations — eventually made us. But they also have made illnesses. Almost all diseases arise from some combination of environmental exposures and genetic blunders in the working of DNA. Breast cancer is a family of genetic mutations.

The great secret of doctors, wrote Thomas — who was a physician, philosopher and head of Memorial Sloan-Kettering Cancer Center — “is that most things get better by themselves; most things, in fact, are better in the morning.” But many things require intelligent interventions — cures. So, to see the federal government at its best, and sequester-driven spending cuts at their worst, visit the 322 acres where 25,000 people work for the National Institutes of Health.

This 60th anniversary of the Clinical Center, the NIH’s beating heart, is inspiriting and depressing: Public health is being enhanced — rapidly, yet unnecessarily slowly — by NIH-supported research here, and in hundreds of institutions across the country, into new drugs, devices and treatments. Yet much research proposed by extraordinarily talented physicians and scientists cannot proceed because the required funding is prevented by the intentional irrationality by which the sequester is administered. Continue reading →

NIH and Lacks Family Reach Agreement on Controlled Access to Data

After more than four months of discussions, the National Institutes of Health and the family of Henrietta Lacks have reached a mutual agreement that will serve to both advance medical research and protect Lacks’ descendants.

In 1951, Lacks died of cervical cancer at Johns Hopkins Hospital in Baltimore. Before her death, doctors removed some of her tumor cells. And something amazing happened. Her cells had a property not seen before: They could grow in a lab. Those cells, now called HeLa cell, were everlasting.

“We have agreed that NIH-supported researchers will deposit any DNA sequences derived from HeLa cells into NIH’s dbGAP database, and have established a process through which researchers can request controlled access to that data. Such requests will be reviewed by a working group consisting of physicians, scientists, a bioethicist and two members of the Lacks family,” said Francis Collins, MD, PhD, NIH director.

The HeLa cells have been the subject of more than 74,000 studies; they have served as the foundation for developing vaccines and provided insights into cell biology, in vitro fertilization and cancer.

Genome: Unlocking Life’s Code

Photo credit: Smithsonian

Photo credit: Smithsonian

This month “Genome: Unlocking Life’s Code,” first state-of-the-art exhibition about genome science, opened at the Museum of Natural History in partnership with the National Human Genome Research Institute (NHGRI). The exhibit boasts cutting-edge interactives, 3D models, custom animations and engaging videos of real-life stories. According to Dr. Eric D. Green, director of the National Human Genome Research Institute (NHGRI), one of the 27 institutes and centers that make up the National Institutes of Health (NIH), “This exhibition reflects a remarkably productive collaboration between components of two scientific icons of the U.S. government – the Smithsonian Institution and the National Institutes of Health.”

The Human Genome Project (HGP), which is celebrating its 10th anniversary, has helped researchers gain a better understanding of genes, opening pathways to new innovations for health and technology. Before the project, researchers knew the genetic basis of about 60 rare genetic diseases; when it ended the number had jumped to 2,200. Today, with research energized by the HGP, we know the genomic basis of nearly 5,000 rare disorders, according to the exhibits website. Continue reading →

Invest in America’s health

By Olivera J. Finn and Robert E. Schoen

An excerpt of an op-ed by Olivera J. Finn, PhD a distinguished professor and chair of immunology at the University of Pittsburgh School of Medicine and Robert E. Schoen, MD, MPH professor of medicine and epidemiology at Pitt’s School of Medicine and Graduate School of Public Health published in the Pittsburgh Post-Gazette.

Olivera J. Finn

Olivera J. Finn, PhD

Robert E. Schoen, MD, MPH

Robert E. Schoen, MD, MPH

Every day, physicians and scientists see the hope and promise that medical research brings to patients and families. For nearly 70 years, research funded by the National Institutes of Health has increased understanding of the causes of disease, contributed to longer life expectancy and improved the health and well-being of all Americans. With such a proud record of economic and social benefit, it is shocking that the House Appropriations Committee has proposed a drastic cut of nearly 20 percent to NIH funding in 2014. This outrageous proposal must be stopped.

Research is a dynamic process. New, life-improving advances are constantly within reach — but only with uninterrupted effort, commitment and funding. NIH Director Francis Collins says these cuts would be a “profound and devastating” blow at a time of unprecedented scientific opportunity. Continue reading →

On the role of scientists in advocacy: what interning at Research!America has taught me

By Megan Kane, PhD

Megan Kane

Megan Kane

As reported on Research!America’s blog and in numerous media channels, scientists are facing a difficult funding environment made even worse by sequestration. I am one of the members of the “entire generation of scientists at risk” that NIH Director Dr. Francis Collins and others have referenced in their warnings about the long-term harm of sequestration. Due to tightening budgets in research laboratories, I was forced to make a decision earlier this year: either delay my graduation from my doctoral program or look for immediate employment outside of a lab environment and possibly never get back to the bench.

A colleague pointed me to the advertisement for a communications internship with a non-profit: Research!America. I was in the midst of pondering alternative careers with my science background and was leaning towards science writing or communication. This communications internship seemed to be a tremendous opportunity to write about science and issues relevant to researchers and advocates in a non-technical format. And it has been an incredible experience. Continue reading →

Member spotlight: UAW Local 5810: The Union For Postdocs at the University of California

By Neal Sweeney, PhD, President. Sweeney is a postdoctoral scholar at UC Santa Cruz studying stem cell therapies for eye disease. Neal Sweeny, PhD

Chartered in 2008, UAW Local 5810 represents over 6,000 postdoctoral scholars at the University of California, or approximately one tenth of all postdocs nationwide. Our members work at the cutting edge of the most sophisticated research in the world in a wide variety of health-related fields and beyond, and their contributions and discoveries move society forward in important ways.

UAW 5810

The contract that our union negotiated with the University of California in 2010 includes a minimum salary scale that matches the NIH/NRSA scale, a stable and comprehensive benefits plan, more job security, and the right to career development resources. With the increases we’ve won in paid time off, female postdocs no longer have to face uncertain maternity leave. And when work-related issues arise, there is an impartial process for resolving them. When postdocs have an equal say in determining our working conditions, our quality of life improves, which in turn improves the quality of research. Continue reading →

A Weekly Advocacy Message from Mary Woolley: Misleading titles, or misunderstanding of science, or both?

Dear Research Advocate,

House of Representatives Science Committee Chair Lamar Smith’s (R-TX) proposed legislation, the “High Quality Research Act,” would undermine, rather than achieve, “high quality” in research, since it would create several new hoops for approval of NSF-funded grants. These appear to be based on the mistaken idea that science follows a linear path to a single metric for success or failure. And the bill requires the NSF director to attest in advance to the success of each funded proposal! Letters penned by former NSF directors and National Science Board chairs and former NSF assistant directors warn of the “chilling and detrimental impact” this legislation could have on the current merit-based system. In order to rebuff this outright attack on science, many more advocates must weigh in. The Coalition for National Science Funding (CNSF) will send a letter addressing the concerns of shifting away from “scientific merit” as the ultimate criteria for determining which science to fund. If you are a part of an organization that would like to sign on to this letter, please contact Sam Rankin. Or write your own. In any case, join us in taking action!

House Majority Leader Eric Cantor’s (R-VA) new bill, H.R. 1724, known as the “Kids First Research Act of 2013,” aims to “eliminate taxpayer financing of presidential campaigns and party conventions and reprogram savings to provide for a 10-year pediatric research initiative …” The bill’s text would limit scientific freedom, as Section 4 is a ban on NIH-funded health economics research. Health economics research is crucial to efficient, effective health care and health care systems, and it also has a significant role to play in ensuring the efficiency and effectiveness of research itself. Especially if you perform, benefit from or use findings from health economics research, but also if you care about the future of science, please reach out to your elected officials to call for eliminating Section 4 of H.R. 1724. Continue reading →

Research into rare premature aging disorder praised as a model of “what’s right” in biomedical research

Recently, a group of scientists, clinicians and patients gathered in a suburb of Washington, DC to discuss scientific progress in the study of a rare premature aging disorder. This disease, Hutchinson-Gilford Progeria Syndrome—often referred to as HGPS or simply progeria—is one you may not have heard of, yet. But the Progeria Research Foundation and families of progeria patients have been working hard to increase awareness and raise funds for research into this rare disease that results in death at an average age of only 13. Among the list of speakers at the conference was the Director of the National Institutes of Health, Francis Collins, MD, PhD and researchers from a number of Research!America member organizations. Continue reading →