Research!America

The U.S. medical research establishment is not only perennially short of dollars, it is short of people willing to participate in clinical trials.

A new survey released by the Society for Women’s Health Research indicates 94 percent Americans have never been informed by their doctors of medical research studies they might participate in. The better news is that more than 70 percent of those who have participated are likely to do so again.

More than one-quarter of women in the survey said they did not know that healthy people can be part of medical research, a significantly lower number than men. “Our ability to improve care, develop new treatments and find cures depends on research and our participation both as healthy volunteers and those with a specific disease or condition,” says Sherry Marts, vice president of scientific affairs for the Society.

This meshes with Research!America’s own public opinion poll findings. In a 2007 report, we found 93% of Americans said their doctor had never suggested they participate in a clinical research study. This and other findings can be downloaded in our 2008 Poll Data Summary, America Speaks volume 9.

The SWHR poll was released as part of National Women’s Health Week, May 11-17.

Urge your Congressional candidates to share their views on health, science, and research! Visit 2008 Your Candidates-Your Health and reach out to your candidates requesting they participate in our voter education initiative.

If your state or territory’s congressional primary has already occurred (Illinois, Indiana, Maryland, Mississippi, North Carolina, Ohio, Pennsylvania, Puerto Rico or Texas), visit Your Candidates-Your Health and view your candidates’ stances on health and research issues. If your candidate has not responded to the survey, send him or her a message from the website. Please be sure to thank candidates who have already responded. Congressional candidates from other states and territories will be added after each congressional primary, so check the site often.

According to a recent public opinion poll from Research!America and ScienceDebate2008.com:
• 83% of U.S. adults say it is important that presidential candidates talk about how science and scientific research will affect their policy-making decisions if they are elected.
• 85% of Americans want a presidential debate on science issues such as health care, climate change and energy.

You can see all the results of the poll here. If you have not already, please sign on to ScienceDebate2008.com to show your support for a presidential debate on how science will be used to help tackle America’s challenges.

Research!America board member Elmer Huerta, MD, MPH, is profiled in today’s Washington Post.

The article describes the success of his Cancer Preventorium clinic, which targets lower-income Latino women for preventive care, at Washington Hospital Center. It also discusses his approach to prevention and public education through a growing line-up of radio and television programs in Spanish, which now air throughout the U.S. and Latin America.

There is much wrong with America’s healthcare system, given all its perverse economic incentives for providers.

But something is very right with it, for the public at large, as Dr. Eric Neilson, Editor-in-Chief of the Journal of the American Society Nephrology and Chair of the Department of Medicine at the Vanderbilt University School of Medicine says this week. He argues, as have we, that since so many Americans work in medical research and treatment, and that healthy people are economically productive people, healthcare should be evaluated for its economic contributions, as well as for the palliative ones.

“The one immediate thing we can do now is maintaining our link to science. It is the discovery ground for future advances in high technology,” writes Dr. Neilson. “As a hedge against growing health care costs, the funding of science is priceless.”

For the press release on this article, click here.

Democrats, Republicans agree on need, disagree on issues; health care tops list

WASHINGTON, DC—May 12, 2008—A new poll shows that 85% of U.S. adults agree that the presidential candidates should participate in a debate on how science can be used to help tackle America’s major challenges. The poll found no difference between Democrats and Republicans on this question. A majority (84%) also agree that scientific innovations are improving our standard of living.

Read more.

The Coalition for Health Funding and the Coalition for Education Funding are inviting organizations to sign-on to a letter in support of a minimum $15 billion increase over FY08 for the House and Senate Labor, Health and Human Services and Education (L-HHS-Ed) Appropriations Subcommittees. Research!America has signed-on to this letter to Appropriations Chairs David Obey (WI) and Robert Byrd (WV) and we encourage your organization to do the same.

Ensuring that the overall L-HHS-Ed allocation is as high as possible will allow for increases in FY 2009 funding for the National Institutes of Health, Centers for Disease Control and Prevention and Agency for Healthcare Research and Quality.

To read the letter and to sign on, please go to www.sign-chf.org. The deadline to sign on is Monday, May 19

The Honorable John Edward Porter, Research!America chair and former Illinois congressman, spoke at the AAAS Science & Technology Forum last week. His points inspired a blog entry at bilibuzz.com, a blog about popular science, archaelogy, nature and future buzz:

“…if you want science to once again become a national priority in the Unites States, it’s your patriotic duty, says Porter, to either: (a) run for office; (b) volunteer to be your candidate’s science advisor, if he or she doesn’t already have one or has one that you don’t like; or, for those of us employed, (c) carefully school yourself on the candidates and their positions on key issues, like embryonic stem cell research, climate change and science education, then urge your candidate to bring those issues front and center in their campaign.”

Research!America’s voter education initiative, Your Candidates-Your Health, is also linked from the site.

In this article on Science Progress, from the Center for American Progress, Rick Borchelt and Kathy Hudson urge two-way communication to better the public-science relationship.

“…the end game of public engagement should be empowerment: creating a real and meaningful mechanism for public input to be heard far enough upstream in science and technology policy making and program development to influence decisions.”

Food riots around the world, a cyclone in Myanmar and global warming may well be signs that the apocalypse is upon us, but there is a fourth horseman at work every day, year after year—the depopulation of sub-Saharan Africa by AIDS.

One of the world’s most passionate advocates on this issue, former UN special envoy Stephen Lewis, spoke this week at the NIH as part of the Fogarty International Center’s 40th anniversary year. Or, rather, he raged—against the Western world’s indifference. There are many reasons for the lack of progress, including U.S. emphasis on abstinence-only sex education in Africa and “subterranean racism” that makes the life of an African child less valuable than that of a Western child.

We already know and have the interventions that can slow the spread of AIDS in Africa, but the problem is delivering them and delivering effective information to young people about prevention. With AIDS researchers continuing the search for a vaccine, attention must also be paid to the science of communicating health messages to young Africans. Lewis noted that in the hardest hit areas, sex workers are not called sex workers and are not called prostitutes either. “They are,” he said, “called peer educators.”

A webcast of his remarks is available here.

In The New Republic, Chris Mooney gives scientists advice for advocacy:

[The science community] “is going to have to accept that the old policy of political disengagement is showing its age.

…

So how can scientists strap on the gloves? They can start by investing, through their major organizations, in mass-media initiatives to communicate the facts on issues like climate change. At the same time, through auxiliary groups, those who care about science should directly take on politicians with the most outrageous anti-science stances … while working to elect better candidates (including more scientists).

…

Science is under political attack anyway, which is precisely the point. The only question is how long researchers are going to sit and take it.”

Mooney also plugs Science Debate 2008, the initiative to get presidential candidates to debate issues of science.

NEW ORLEANS—April 29, 2008—Mental health issues top the list of ways Louisianans say the 2005 hurricanes affected the health of people in their community. In a new state poll, symptoms such as increased anxiety, stress and depression, were cited more often than other factors, including property destruction or physical illness.

The poll findings are being released today at a forum in New Orleans on mental and public health, convened by Research!America, Pfizer, Tulane University School of Public Health and Tropical Medicine, and Louisiana State University Health Sciences Center. The forum is supported by Pfizer.

A majority (58%) of Louisiana residents say there are not enough resources like specialized health care and medicines in their community to treat people who need mental health services today, two and a half years after the hurricanes. They also believe more can be done to support local and state health departments that are expected to prepare for and respond to health threats.

However, Louisianans acknowledge the importance of a range of individuals and groups with helping to improve health conditions since the hurricanes, including hospitals (92%), volunteers (92%), health care professionals (91%), religious groups (90%) and the business community (88%).

“Much progress has been made in restoring psychiatric infrastructure in New Orleans after Katrina,” said Mark Townsend, MD, vice chair, Department of Psychiatry, LSU Health Sciences Center, a panelist at the forum. “The next steps are even more complex-rebuilding inpatient and other facilities, attracting more mental health professionals to the region and greatly increasing community services.”

“Research into infants’ mental health has lagged behind other areas, and catastrophic events like Katrina show the need for further investment in this and other areas of mental health research,” said Neil W. Boris, MD, clinical assistant professor, Tulane University School of Medicine. “In my work studying how traumatic experiences affect the ways infants bond with their mothers, we also see the impact on a child’s later relationships.”

On the positive side, the poll showed that many (69%) think those who survived the hurricanes have developed new skills for coping with disaster. “Much more is needed to address mental health and public health in Louisiana, but the good news is that Louisianans are finding new ways to cope,” said Cathryn Clary, MD, vice president, external medical affairs, Pfizer Inc. “Pfizer’s partnerships in this region, like our collaborations around the world, reflect our commitment to working together with local, national and international stakeholders in the healthcare system to advance patient health in the U.S. and globally.”

“The poll and forum today show how partnerships among academia, business, government and volunteers can spark dialogue that leads to actions,” said Karen Goraleski, director, public health advocacy, Research!America. “We must make it a priority in Louisiana and nationally to invest in public and mental health research, to improve the health of our communities, our nation and our economy.”

In the poll, 93% said medical and health research is important to the state’s economy, and 97% said it is important for Louisiana to be a leader in medical and health research-yet only 32% said it currently is.

About the Poll

Charlton Research Company conducted the poll by telephone (random-digit dialing) with a sample of 800 adults in Louisiana. The entire sample was proportionate to the state’s demographics and has a margin of error of ±3.5%. Nine in 10 of those participating in the poll were living in Louisiana or the Gulf Coast region when the hurricanes hit in 2005; more than half (54%) currently reside in the state’s coastal parishes. To learn more about the forum and the poll, visit www.researchamerica.org.

Representatives from Tulane University, LSU Health Sciences Center, Pfizer and Research!America are available for further comment.

Thank Your Senators

Yesterday, the Senate approved the Genetic information Nondiscrimination Act (GINA) with strong bipartisan support, 95-0. GINA will protect Americans from genetic discrimination by employers and insurers. Thank your Senators for passing this important legislation that will help advance research and realize the benefits of personalized medicine.

Genetic nondiscrimination legislation was first introduced 13 years ago, but has met many roadblocks along the way. The Senate approved GINA in the previous two sessions of Congress, but the House could not secure enough votes for passage. On April 25, 2007, the House passed GINA, 420-3. After nearly a year of negotiation, the Senate approved GINA. President Bush is expected to sign the bill.

Thank you to the many advocates who have spoken out in support of GINA over the years. It is important to show your appreciation to your Senators for approving the bill. Take action now!

While we like to think that being an honorary director of Research!America is the pinnacle of recognition for a researcher, we joyously salute Dr. Michael DeBakey, who this week received the Congressional Gold Medal, the highest award Congress makes to a civilian.

At a ceremony in the Capitol Rotunda, President Bush and Speaker Pelosi presented Dr. DeBakey with the medal for a lifetime of achievement in the practice of and research into medicine. Dr. DeBakey, of course, pioneered the coronary bypass operation that has saved millions of lives and helped create the concept of the Mobile Army Surgical Hospital (MASH).

Dr. DeBakey, who will be 100 years old in September, praised Medicare; said national health reform should be based on the Veterans Administration model, which he helped develop; and praised Congress for supporting medical research. “You have no idea what you’ve done with medical research in improving the medical care of this country,” he said. “It is the envy of the world. And I hope you will continue to give it the consideration you’ve given it so far.”

At least as much, we hope.

The possibility of Science Debate 2008 got new life Tuesday night when the issue was joined head-on by at least one of the presidential candidates. In her victory speech in Pennsylvania, Sen. Hillary Clinton listed among her priorities “end the war on science” and lead a “renewed commitment to science and research” toward curing autism, Alzheimer’s, cancer and diabetes.

It would be more useful to the effort to educate Americans on the importance of scientific research if she, Sen. Barack Obama and Sen. John McCain would recant their views linking autism and childhood vaccines.

Clinton has said: “We don’t know what, if any, kind of link there is between vaccines and autism - but we should find out.”

Obama said: “We’ve seen just a skyrocketing autism rate. Some people are suspicious that it’s connected to the vaccines. This person included. The science right now is inconclusive, but we have to research it.”
McCain said: “It’s indisputable that (autism) is on the rise amongst children, the question is what’s causing it. And we go back and forth and there’s strong evidence that indicates that it’s got to do with a preservative in vaccines.”
As dispassionate scientists have concluded repeatedly, there is no link.

In the case of Sens. Clinton, Obama and McCain silence on science is better than pandering to ignorance. And that is why Science Debate 2008, even if not held on national TV, still needs to happen.

Chris Mooney, the science journalist who made a name for himself with a book called “The Republican War On Science,” has some fighting words for scientists in the most recent issue of The New Republic. He wants scientists to fight back.

Citing timidity in using political means to fight political attacks, Mooney says, “… (S)cience has probably never been more relevant to policy-making. Which means that, on contentious issues like climate change and stem-cell research, the science community’s public reticence can have dangerous results. … They can start by investing, through their major organizations, in mass-media initiatives to communicate the facts on issues like climate change. At the same time, through auxiliary groups, those who care about science should directly take on politicians with the most outrageous anti-science stances …”

Read the full article here.

Contact Your Senators Now

The Senate could vote on the Genetic Information Nondiscrimination Act (GINA) as soon as this Wednesday. Please contact your Senators immediately to urge them to support this important legislation. GINA is designed to protect Americans from genetic discrimination by employers and insurers. The absence of uniform genetic privacy protection may discourage patients from being genetically tested and participating in clinical trials.

The Senate approved GINA unanimously during the two previous sessions of Congress, but the House of Representatives did not take action at the time. However, the House passed GINA with strong, bipartisan support 420-3 in April 2007. Now is the time for GINA to finally become law. Urge your Senators to support GINA today!

Although “science versus faith” is a false dichotomy, “faith” apparently is the more appealing topic for politicians to discuss. So far, none of the three remaining presidential contenders has agreed to participate in the national bipartisan call to participate in “Science Debate 2008,” but Sens. Hillary Clinton and Barack Obama, did just agree to take part in a “compassion forum” next Sunday night, which likely will focus on the nexus between faith and issues such as poverty, the environment, AIDS and Darfur.

Shawn Otto, who is leading the call for a science debate, notes that science issues are moral issues as well. Faith is not subject to proof as are scientific theses, yet this presidential campaign, just like almost all public policy debates, ignores science as the basis for arriving at real solutions for real people: bolstering federal support for medical research, lifting restrictions on the use of federal dollars for stem cell research, genomics, climate change, genetically modified crops and species survival, for example.

Maybe creationism versus evolution, or abstinence-only sex education, might come up next Sunday, but there is little likelihood there will be a robust discussion of the role of science in formulating public policy in other areas – from bridge design to regional economic growth.

Martin Peretz, editor of The New Republic and a backer of the Science Debate 2008, says, “(T)he American future depends on American advances in science and engineering. … Of what are the candidates so frightened? Let’s see their brains have to stretch, and for God’s sake, too.”

The Nobel laureates, other scientists and university presidents behind “Science Debate 2008” are attempting to get it scheduled before the May 20 Oregon primary. Time is running out, not only for holding candidates accountable on scientific questions, but for the future of American pre-eminence in the field.

From a New Republic blog post, “Why the Silence on Science?”

Health insurance, on which Hillary purports to be senior professor, has never been discussed in this campaign in the context of medical research, probably the most significant factor affecting care of patients. Encompassing all of these matters and more is the fact that the modern American economy has been built on scientific research, technological development and engineering skills.

The Washington Post has an interesting feature on its site. It plots where the presidential candidates stand on different health issues and you can compare your own views. It looks like it was actually developed by healthcentral.com, which provides information about different health conditions.

Research!America is pleased to support the Americans for Cures Foundation in presenting SOSCA (State of Stem Cell Advocacy) 2008, this year’s leading conference for grassroots advocates supporting stem cell research.

The conference will be held on April 12-13 at the University of California, San Francisco, Mission Bay Conference Center. Americans for Cures Foundation welcomes new and experienced advocates of all diseases and conditions to learn approaches that can further their advocacy for stem cell research. Registration for the event is open at www.americansforcures.org.

Confirmed speakers include Robert N. Klein, Chair, California Institute for Regenerative Medicine; Amy Comstock Rick, CEO, Parkinson’s Action Network and President, Coalition for Advancement of Medical Research; Bernard Siegel, founder and Executive Director of Genetics Policy Institute; and Brock Reeve, Executive Director, Harvard Stem Cell Institute, and brother of Christopher Reeve. Michael J. Fox will present via video.

Visit the Americans for Cures Foundation Web site for more information on SOSCA 2008 or send an e-mail to inform@americansforcures.org.