Monthly Archives: August, 2013

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.

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A Weekly Advocacy Message from Mary Woolley: Finally, a breakthrough in classification of R&D

Dear Research Advocate:

The Bureau of Economic Analysis has reclassified research and development costs from an “expense” to an “investment” when calculating GDP. We think Members of Congress should do the same. Common sense tells us R&D is an investment, not an expense; in general conversation we all talk about R&D as an investment, but it isn’t accounted for that way on the federal books. The arguments we’ve been making are now further bolstered by the BEA’s decision. Spread the word!

One hundred and sixty five university presidents and chancellors, representing all 50 states, have called on the president and Congress to reverse the pending “innovation deficit” in an open letter published last week in Politico before the August recess. With more than half of the economic growth in the U.S. since WWII attributable to innovation — largely due to the nation’s commitment to higher education and federally supported research — our society and our economy are at risk if we continue on today’s trajectory.

These are arguments to use as we work to keep research and innovation in the conversation during the August recess. We have launched a reprise of our social media campaign using the hashtag #curesnotcuts. Please take part, so that policy makers, at home in their districts this month, get the message loud and clear that Americans want medical research to be protected from indiscriminate cuts; so they hear that research and innovation require committed, robust investment. Earlier this week, I was on “Radio Smart Talk” on WITF-FM, a Pennsylvania NPR affiliate. During that show I spoke about the damaging effect of the sequester and fielded questions from listeners. When making your case, you might find it useful to pull from those radio soundbites or from the points we contributed to an editorial that appeared in the The (Newark, NJ) Star-Ledger. Continue reading →

Sequestration not hurting? Ask cancer patients

An excerpt of an op-ed by Dr. Jeffrey Vacirca, chief executive and managing partner of North Shore Hematology/Oncology Associates published in Newsday.

NSHOA kkSome news reports suggest that sequestration is not having an impact on our country. Those reports are blind to what is happening to cancer care and the devastating impact of the sequester cut to cancer patients.

Sequestration resulted when Congress could not agree to federal budget cuts. Many made dire predictions about the automatic budget cuts required by sequestration, including an across-the-board cut to Medicare, but once they were imposed, much of the doomsaying ended.

Few understand the harmful impact that the cuts are having on cancer care, and their potential to seriously imperil its future.

Less than eight years ago, close to 90 percent of cancer treatment was delivered in community cancer clinics. We pride ourselves on providing our patients with the highest quality cancer treatment in a convenient location, a caring environment, and at a lower cost. It’s now estimated that less than 70 percent of cancer care is delivered in clinics like ours, with treatment increasingly shifting to the more expensive, and typically less convenient, hospital setting. With roughly 50 percent of cancer care covered by Medicare, hospital cancer care costs taxpayers $6,500 more per patient per year and seniors $650 more in co-pays compared with care from community-based cancer centers, according to a study by Milliman, a leading health care market research firm. The expense is even greater for patients covered by private insurance.

Read the full op-ed here.

Nominate a White House Champion of Change for Public Health and Prevention

Know someone who is doing extraordinary things to improve public health in your community? Nominate them (before Friday, August 9) as a Champion of Change for Prevention and Public Health.

The champion’s work may involve:

  • Supporting community and clinical prevention efforts to address chronic disease, increase education and outreach, and integrate primary and behavioral health;
  • Creating healthy and safe communities by promoting healthier schools, homes and workplaces that make the healthy choice the easy choice;
  • Working to address health disparities and empower all Americans to make healthy choices by addressing health concerns that disproportionately affect certain populations;
  • Strengthening public health infrastructure and improving public health’s capacity to detect and control disease and other threats;
  • Increasing the uptake of important preventive services; and
  • Promoting tobacco prevention.

“We know that efforts to promote the public’s health and prioritize prevention happen in America’s towns and cities, in schools and parks, in churches and community centers. Every day, local leaders across America’s communities are stepping up in big ways to make sure all Americans have the opportunity to live a healthy life,” said Paul Dioguardi, director, Office of Intergovernmental and External Affairs, U.S. Department of Health and Human Services, in a communication.

Winners will be invited to the White House in September to celebrate their accomplishments and showcase their actions to support healthier communities.

If you have any questions, email ExternalAffairs@hhs.gov.

The Seattle Forum on Science Ethics & Policy

Current FOSEP leaders: Renee Agatsuma, Cyan James, Bish Paul, Abigail G. Schindler, PhD, Corey Snelson, PhD, Christopher Terai. (James and Schindler are the main authors)

FOSEP logoFounded by Melanie Roberts in 2004, the Seattle Forum on Science Ethics and Policy (FOSEP) brings distinguished speakers to campus, builds community science literacy, and trains future leaders in science policy and advocacy. While there can be a dearth of opportunities at the university level to educate scientists in policy, advocacy, and communication, FOSEP aims to explore the intersection of science and society and to educate its members to become future leaders and innovators. At FOSEP we provide unique leadership opportunities for graduate students and postdoctoral fellows and support developing leaders in learning to better communicate advances in science and technology at the University of Washington and its partner institutions.

FOSEP-led discussions and lectures are a place where students, professionals, and community members of all levels can exchange views on issues as diverse as food policy, health care, and astronomy. Sequestration and continued budget cuts to federal research funding are an increasing concern among FOSEP participants. In response, we have held discussion groups regarding sequestration and science funding, have encouraged our 300+ members to contact their elected officials, and have allied FOSEP leaders with ASBMB and ASPET’s science policy and advocacy activities. Continue reading →

VA Health Care

Last week, a briefing sponsored by the Friends of VA Medical Care and Health Research (FOVA) brought the Department of Veterans Affairs (VA) Research and Development program to Capitol Hill.  Two researchers – John McQuaid, Ph.D., of San Francisco VA Medical Center and Daniel Gottlieb, M.D., M.P.H., of VA Boston Healthcare System – shared their work to advance health outcomes for veterans.   The topics discussed varied, including substance abuse, phantom pain, depression, and sleep apnea, and represented just a small fraction of the research conducted by VA Research and Development. The mission of the VA research team was clear: we as a nation have the responsibility to apply science to veterans’ care in order to achieve the highest level of care for those who served this country.

In order to reach that goal, the many players in the health research ecosystem need to work together.  The speakers described the system as interdependent, highlighting the “cross-pollination” across the various public, private, and academic research systems.  VA Research and Development has successfully partnered with other government agencies – including the Department of Defense, the National Institutes of Health, the Centers for Disease Control and Prevention and the Agency for Research and Healthcare Quality – in order to maximize the reach and scope of their research.  Examples from the San Francisco VA Medical Center model promoted the unique role of non-governmental organizations, such as non-profits, in linking federal and private research partnerships.  Strategic collaboration can leverage collective resources for research during this era of tight budgets and allow for improved health outcomes for our veterans.  To learn more about the important research conducted through the VA Research and Development program, please click here.

Join us (again!) for a Social Media Engagement Campaign for August Congressional Recess

The August congressional recess is here! Members of Congress are back home for the month long break. Now’s the time to speak up and urge policy makers to make research for health a higher national priority before they return to Capitol Hill and make decisions that will affect the health and prosperity of our nation. Join Research!America’s social media congressional recess campaign, Medical Research is at Risk. We Need Cures, Not Cuts! Customize your messages with statistics, patient/researcher stories, examples of innovative research, and descriptions of the impact of sequestration to help make research part of the national conversation on social media and beyond.

Follow us on Twitter @ResearchAmerica and use the hashtag #curesnotcuts. We will also be posting updates on our Facebook page and we encourage you to engage your representatives on social media channels as well.

Sample Twitter messages:

  • .@RepJohnDoe, sequestration=fewer doses of vaccines for the flu, measles, whooping cough & hepatitis. We need #curesnotcuts!
  • If we don’t act soon, #sequestration & additional cuts will endanger private sector innovation. #curesnotcuts  http://bit.ly/19dKiHZ
  • .@AHRQNews is the lead agency funding research that has reduced deadly hospital infections, which kill 100,000 each year. #curesnotcuts
  • Impact of #sequestration & other budget changes to @CDCgov = $40 million reduction in HIV prevention. #curesnotcuts http://1.usa.gov/18vU19O
  • If user fees paid by industry are subject to sequestration, @US_FDA’s budget will lose $85M, slowing access to breakthroughs. #curesnotcuts Continue reading →

A Weekly Advocacy Message from Mary Woolley: Dispelling a Few Myths

Dear Research Advocate:

Myth #1: Congress doesn’t pay attention during the August recess. Not true! Many town hall meetings are planned. Since the debt ceiling and appropriations negotiations are coming up in September, the August recess is actually a very important time for advocacy. Use this month to drive the point home that medical research should not be subjected to budget cuts by attending a town hall meeting, meeting with district staff and participating in our social media campaign, #curesnotcuts. Click here for sample messages, or draw from a recent op-ed penned by The Honorable John Edward Porter, Research!America chair. The op-ed ran in several McClatchy-Tribune newspapers across the country last weekend. In it, he highlights the dangers that indiscriminate budget cuts pose to our medical and health research ecosystem.

Myth #2: It makes no difference when scientists speak out. On the contrary, one of the most effective strategies for promoting and protecting research is public engagement by scientists. It may seem like a waste of time or an unjustifiable obligation, but if scientists don’t speak up about their work, the funding that allows that work may evaporate. In a recent entry on his website, David Eagleman, a PhD researcher who recently received an award from the Society for Neuroscience, makes the case that the benefits (such as inspiring critical thinkers, stemming the flow of bad information, informing public policy and more) clearly outweigh the cost of time to engage in outreach and advocacy. For those ready to engage, some important points and valuable tips on how to communicate clearly and effectively were highlighted in yesterday’s Nature blog. Research!America Board member and AAAS CEO Alan Leshner is among the experts quoted. Continue reading →