Tag Archives: Ellen Sigal

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 →

Friends of Cancer Research Releases White Paper on Breast Cancer Health Disparities

The conclusion of “Eliminating Breast Cancer Health Disparities: Communicating to At-Risk Populations,” a white paper recently released by Friends of Cancer Research, is summed up with a quote from breast cancer survivor Rep. Debbie Wasserman Schultz (D-FL): “There have been so many advances in screening and treatment of cancer, but all of that is moot if women are not learning about their bodies, taking steps to reduce risk factors, and getting regular and appropriate screening.”

That exemplifies the key takeaway: The white paper is aimed at stakeholders from research to health care delivery, but stakeholders alone won’t be successful in achieving health equity. Patients themselves must be involved too.

The white paper includes four recommendations, with several additional bullet points within each recommendation. The recommendations include:

  • Investigate disparities between women with cancer and healthy women;
  • Build relationships that work directly with at-risk populations;
  • Create expectations for minority participation in the scientific field;
  • And use current and emerging technologies to engage a larger number of patients.

Support for the white paper was provided by The Avon Foundation for Women.

Friends of Cancer Research is a Research!America member, and FOCR’s chairperson and founder, Ellen Sigal, PhD, is a Research!America Board member.

A Weekly Advocacy Message from Mary Woolley: Congress is back and there is lots to talk about

Dear Research Advocate,

Congress is back in Washington but still in campaign mode, making its decisions with the election very much in mind. A 6-month continuing resolution (C.R.) is expected to pass momentarily. The C.R. would put off appropriations decision-making until the new Congress has gotten under way, flat-funding the government through March of next year at fiscal 2012 levels. The atmosphere of fiscal uncertainty for the agencies that fund research, and everyone seeking that funding, is in fact demoralizing in the extreme. Compounding the problem is that the C.R. does nothing to address the looming problem of sequestration, which is scheduled to take effect on January 2, 2013. The administration is slated to release a report tomorrow detailing how the sequestration cuts would be implemented at the department and agency level; it is unlikely to single out research and innovation for special protection. Thus it is more important than ever that our stakeholder community unite in a call to stop sequestration. We encourage you to join us and other members of the United for Medical Research (UMR) coalition on September 20 in a press conference at the National Press Club at 9:30 a.m. Please RSVP to sbauer@gpgdc.com.

Last week, a timely op-ed by Michael Milken in the The Wall Street Journal highlighted the wondrous medical advances and economic prosperity that have been made possible through investments in research. The op-ed coincided with the Milken-sponsored Celebration of Science, a weekend-long series of discussions and other events shining a spotlight on the multifaceted contributions of science to the well-being of Americans and populations throughout the world. In the course of the proceedings, both Senate Majority Leader Harry Reid (D-NV) and House Majority Leader Eric Cantor (R-VA) spoke forcefully about the high priority the nation must place on medical research.

On Tuesday this week, the Albert and Mary Lasker Foundation announced the recipients of the prestigious Lasker Awards – often referred to as the ‘American Nobels’ – which will be presented in New York City later this month. The accomplishments of these awardees exemplify the power of research to unlock knowledge that is of invaluable benefit to society. Mary Lasker, a founder of Research!America, lives on with her hard-hitting message: “If you think research is expensive, try disease!” For timely information on the costs of disease as well as the value and promise of research, see our fact sheets. Use them in your advocacy!

Three other media pieces this week were timed for Congress’ return. Our Your Candidates-Your Health ad is running in Politico now. Use it to leverage your request to candidates to tell us all what they will do to make research a priority. A Washington Post op-ed co-authored by Rep. Jim Cooper (D-TN) and Research!America board member and AAAS Executive Director Dr. Alan Leshner fights back against kneejerk reactions to research based on the name of the project and/or the misconception that science is a mechanical process rather than an iterative, dynamic one. The American Association for the Advancement of Science (AAAS) and others have come together to recognize outstanding researchers whose contributions belie their detractors with the first Golden Goose Award ceremony.

With her letter in the The Wall Street Journal, Ellen Sigal, chairman and founder of Friends of Cancer Research and a Research!America Board member, emphasizes that the views and values of patients must be taken into account when FDA makes the risk vs. benefit calculations that factor so importantly in drug approval decisions. She points out that “risk” is in the eye of the beholder when a new drug is the last and best hope for a terminally ill patient. It is a welcome development that more patients and patient groups are stepping up to take their rightful place in the research process, ultimately driving it across the finish line faster. Patient engagement with Congress has always been high impact; now we need it to influence candidates to make medical progress a top national priority.

Sincerely,

Mary Woolley