Category Archives: Mental Health Research

A Weekly Advocacy Message from Mary Woolley: Can we put a dent in the costly toll of suicide?

Dear Research Advocate: 
 
The loss of American Icon Robin Williams has riveted national attention on suicide, one of the 10 most common causes of death in the United States. Today, we are releasing our updated fact sheet on suicide that you can use when meeting with lawmakers and educating others about the impact research can have. Efforts to prevent suicide rightly draw on research findings. But progress has been painfully slow, stymied by serious gaps – partly due to severely limited funding – in the basic research base that precedes private sector development, and stymied by the equivalent of handcuffs placed on social science research.

The notion promulgated by some in the Congress that social sciences research doesn’t add enough value to merit federal funding is not just unfounded, it’s holding us back. Social sciences research saves lives. Case in point: behavioral research guided the development of a suicide intervention that was pilot tested in schools in Georgia and Connecticut and resulted in a 40% reduction in attempted suicides. It has since been implemented in schools across the country. This is just one example of social sciences research at work.

Research moves faster when patient advocates engage. This is the history of the nation’s commitment to defeating polio, to ramping up HIV/AIDS research, to prioritizing breast cancer research and women’s health research overall. Writing in the New Yorker last month, Seth Mnookin described the impact that “dedicated … well-informed families” can have in pushing progress. In his responsive letter to the editor, Peter L. Saltonstall, CEO of the National Organization for Rare Disorders, focused on the use of social media by patient groups to establish global registries, taking full advantage of abilities we didn’t have just a few years ago, and in so doing, saving lives. But there is another message here. The research community must work more closely with patient advocates in order to drive medical innovation. As one of the researchers in the Mnookin article said, “Gone are the days when we could just say, ‘We’re a cloistered community of researchers, and we alone know how to do this.’” Continue reading →

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Member Spotlight: University of Southern California School of Social Work

By Marilyn Flynn, dean of USC School of Social Work

FlynnAs one of the nation’s first schools of social work, the USC School of Social Work is widely recognized as a top-tier graduate program that offers rigorous career preparation for academic, policy, and practice leaders and provides an innovative and supportive environment for research on critical social problems.

Researchers at the school are dedicated to exploring the social and behavioral determinants of physical and mental health issues, in addition to translating research findings into real-world strategies to improve the health and well-being of individuals and society. Because medical research is a critical component of this interdisciplinary pursuit, our scientists naturally embrace the mission of Research!America to improve awareness and build public support for research seeking to cure, treat, and prevent physical and mental disorders.

Our Hamovitch Center for Science in the Human Services was the first endowed center for interdisciplinary social work research at any university. A leader in the evidence-based decision-making and practice movement, the center continues to expand with the recruitment of nationally recognized faculty members and newly established research cores and institutes in aging; behavior, health, and society; child development and children’s services; homelessness, housing, and social environment; management, organizations, and policy transformation; military; and serious mental illness. Continue reading →

Celebrating Science

Excerpt of a blog post by Dr. Tom Insel, Director of the National Institute of Mental Health.

(From NIMH blog)

(From NIMH blog)

The Research!America awards dinner is like a lot of DC galas, complete with members of Congress, celebrities, and speeches to honor those who have contributed to a cause.  For Research!America, the cause is biomedical research and this year, as in each of the past 25 years, there were honors bestowed on advocates for cancer and rare diseases.  Kathy Giusti, diagnosed with multiple myeloma in 1998, spoke passionately about the lack of research on this blood cancer and her singular fight to create a registry and clinical trials, leading to new treatments that have extended her own life and the lives of many others well beyond all predictions.  The parents of Sam Berns, an icon for the rare disease progeria, spoke of their son’s commitment to find a cure for this disorder in which children age rapidly and die early.  Sam died last month at age 17, but during his brief life, and partly through his efforts working with the world’s foremost genetics labs, the genetic cause was found and new treatments were developed that will almost certainly extend life for others with this rare mutation (see Sam’s inspirational Ted talk ).

For me, what made this event different from previous years was the recognition of advocates for people with mental illness.  The actress Glenn Close was recognized for co-founding BringChange2Mind, a campaign to reduce negative attitudes toward those with mental illness.  In her eloquent remarks accepting the award, Glenn introduced her sister, Jessie Close, and her nephew, Calen Pick, who each battle serious mental illness.  Jessie has struggled with bipolar disorder and Calen with schizophrenia.

When Glenn invited Jessie and Calen to make a few remarks, the evening really became historic.  Together, they described a journey undertaken with Deborah Levy and her colleagues at McLean Hospital and elsewhere over the past 3 years.   The research team found that Calen and Jessie shared a rare genomic copy number variant resulting in extra copies of the gene for glycine decarboxylase.  This gene encodes the enzyme that degrades glycine, a key modulator of the NMDA receptor, which has been implicated in psychosis.  Having extra copies of this gene, it seemed possible that Jessie and Calen would be deficient in glycine, with less activity of the NMDA receptor.

Read the full post here.

A Weekly Advocacy Message from Mary Woolley: We’re all in this together

Dear Research Advocate:

Fostering research and innovation has long been a multi-pronged effort — government, industry, academia, patients and patient organizations, foundations, and individual philanthropists — all working to advance research. The current interest shown by private philanthropists in advancing science is an echo of a phenomenon witnessed a century ago — and a sign of the opportunity available in some way to all of us to accelerate medical progress and maintain our nation’s competitive edge. As reported in a recent front page New York Times article, private donors are stepping up in a big way at a time when scientific opportunity has never been greater. But it is worth noting that even as philanthropic spending is surging, and while it has historically been an important, often energizing component of U.S. leadership in science, the most robust philanthropic support imaginable would still not be sufficient — nor is it intended to — replace federal support.

In tracking medical R&D spending across all sectors over time, Research!America’s annual investment reports not only support the NYT finding that philanthropic spending is growing, but place that spending in perspective. For example, in 2011, NIH spending dwarfed medical- and health-related philanthropic research spending by nearly $29 billion. That does not mean philanthropic giving isn’t important; rather, it demonstrates that the magnitude of funding needed to drive medical progress is too large to rely on individual or foundation giving. Public and industry dollars are quite simply indispensable to the research pipeline. We call on every sector, every individual (including you billionaires out there!) to step up and increase support. We urge you to fund basic as well as translational research, to identify new approaches and new partnerships, to show us all how to take risks and demand accountability, and to work with and for the overall research enterprise. And — perhaps most important of all — commit to giving confidence to young scientists that their work is valued and will be sustained.

There’s no question about it: We all play a role in achieving better health and quality of life, very much including those who volunteer to participate in clinical trials. We are proud to spread the word about a new campaign initiated by the Pharmaceutical Research and Manufacturers of America (PhRMA) and the National Minority Quality Forum (NMQF). The “I’m In” campaign aims to increase diversity in clinical trials and give patients the opportunity to connect with trials in their communities. Research!America polling shows that while Americans are interested in clinical trials, levels of participation are low, especially among African-American, Asian and Hispanic populations. Advancing medical progress means participating! Our newly released America Speaks, Volume 14 poll data summary booklet includes relevant information on public attitudes about clinical trials.

One time-sensitive way you can exercise your responsibility for advancing medical progress is by asking your representatives in Washington to join the chorus of legislators who support strong, continued funding for research. Members of the House and Senate have the opportunity to share their priorities with the appropriations committees until April 4. Send a note to your representatives urging them to submit appropriations requests that support robust medical research funding in FY15.

Finally, I encourage you to review our just-released 2013 Annual Report, which thanks all our members and supporters — you! — for working with us to inform and engage policy makers, media and the public.

Sincerely,

Mary Woolley

Research!America Honors Congressmen Frank Wolf and Chaka Fattah for Advancing Medical Innovation to Save Lives and Strengthen the Economy

Reps. Wolf and Fattah to Receive the Edwin C. Whitehead Award for Medical Research Advocacy at Research!America’s Advocacy Awards Dinner on March 12

ALEXANDRIA, Va.February 12, 2014-Reps. Frank Wolf (R-VA) and Chaka Fattah (D-PA) will receive the Edwin C. Whitehead Award for Medical Research Advocacy for their leadership and unwavering commitment to supporting policies that promote federal and private sector medical research and innovation. Reps. Wolf and Fattah have spearheaded efforts to create a legislative and regulatory climate conducive to medical innovation.

“Representatives Wolf and Fattah are exceptional champions for research,” said Research!America Chair John Edward Porter. “They have worked vigorously to increase funding for research, support policies that ignite public and private sector innovation, maintain our global competitiveness, and help patients and their families struggling with costly and debilitating diseases.”

Wolf is currently a senior member of the House Appropriations Committee, presides as chairman of the Commerce, Justice, Science Subcommittee, and is a member of the Transportation, Housing and Urban Development and State and Foreign Operations subcommittees. Throughout his distinguished tenure in Congress, Wolf has worked to advance the state of science and R&D, and he recognizes the role innovation plays in our nation’s economy, health and international competitiveness. Notably, he was a founder of the “Rising Above the Gathering Storm” Commission which sparked a national effort to bolster federal science, technology, engineering and mathematics (STEM) education and R&D programs. These efforts culminated in the enactment of the first America COMPETES Act in 2007 to increase public-private partnerships and provide assistance to innovators throughout the country. Wolf also supported the act’s reauthorization in 2010. He is an active member of several caucuses, including research and development, Parkinson’s, Alzheimer’s and multiple sclerosis. 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: Moneyball

Dear Research Advocate:

Just in time for the World Series, a national campaign to make evidence-based government spending decisions has been announced. Moneyball for Government, a project of Results for America, advocates prioritizing limited taxpayer dollars by investing strategically in what works, eschewing “gut level” instinct for metrics-driven decision-making. Stakeholders in medical and health research sometimes have difficulty measuring or agreeing on metrics that matter; it’s time to work through this challenge so that when stakeholders talk about research accountability — in the current budget conversations or in any context — we can speak with one metric-driven voice to emphasize the returns on research investment in both lives and money saved.

Research!America is working to assure our message is in the forefront of the bipartisan Budget Conference Committee’s deliberations. We have written to the committee expressing the importance of investing in medical and health research to address the national debt and deficit. We urge the committee to eliminate the sequester; it continues to take a toll on our economy and our society, in part by eroding our capacity to innovate in the medical and health fields. Please join us in reaching out to your representatives to share the importance of prioritizing investments in research. Continue reading →

Research!America Honors Leaders in Medical and Health Research Advocacy

Glenn Close, Dr. Leroy Hood, Dr. Reed Tuckson, Kathy Giusti and the Progeria Research Foundation to Receive 2014 Research!America Advocacy Awards

ALEXANDRIA, Va.-October 22, 2013-Research!America’s 18th annual Advocacy Awards will honor extraordinary advocates of medical and health research who are distinguished in their commitment to advancing medicine and health. The event will take place on Wednesday, March 12, 2014, at the Andrew W. Mellon Auditorium in Washington, DC, as a part of Research!America’s 25th anniversary commemoration.

The 2014 Advocacy Award winners are actress Glenn Close and her family; Leroy Hood, MD, PhD, president, Institute for Systems Biology; Kathy Guisti, founder and CEO of the Multiple Myeloma Research Foundation (MMRF); Reed Tuckson, MD, managing director, Tuckson Health Connections; and The Progeria Research Foundation (PRF). The winner of the Edwin C. Whitehead Award for Medical Research Advocacy will be named by Research!America’s Board of Directors later this year.

“This year’s honorees have transformed the lives of many individuals across the country through their remarkable achievements and advocacy for medical and health research,” said Mary Woolley, president and CEO of Research!America. “Their unwavering dedication is helping to elevate research in the national conversation and inspire a new generation of advocates.” Continue reading →

Raising Awareness of PTSD Throughout June

PTSDToday is Post-Traumatic Stress Disorder Screening Day, one of the key days in National PTSD Awareness Month. If you think you might be suffering from PTSD, the Department of Veterans Affairs’ National Center for PTSD is an excellent resource to consult.

And that makes sense: PTSD is most commonly associated with the military. Troops returning from far-flung theaters, having experienced the uncensored horrors of war, are prime candidates to develop PTSD. It’s estimated that 1 in 5 veterans of the wars in Iraq and Afghanistan — 300,000 in all — have been diagnosed with PTSD.

PTSD is hardly limited to the military. Victims of abuse or assault and people closely affected by serious accidents or natural disasters are also most likely to develop PTSD. (If you’re looking for more background, our friends Josh and Chuck at “Stuff You Should Know” produced a podcast on PTSD in late May.) Continue reading →

Investments in Research Reduces Injury and Violence

By Frederick Rivara, MD, MPH. Rivara is President of Society for Advancement of Violence and Injury Research (SAVIR). Dr. Rivara holds the Children’s Guild Association Endowed Chair in Pediatrics, and is a University of Washington professor of pediatrics and an adjunct professor of epidemiology. He  is also Editor of JAMA Pediatrics.

Frederick Rivara, MD, MPH

Frederick Rivara, MD, MPH

More than 400 public health researchers and practitioners participated in the 2013 National Meeting of the Society for Advancement of Violence and Injury Research (SAVIR) and Safe States Alliance. Hosted in Baltimore by the Johns Hopkins Center for Injury Research and Policy, this event focused on how research and practice have contributed to reducing injury and violence in this country over the last twenty years while at the same time calling attention to the pressing needs of today and tomorrow.

Speakers provided compelling examples of how investments in the science of injury prevention and control have paid off in lives saved. For instance, the tools of epidemiology were instrumental in establishing the heightened risk of death among infants in the years before car seats were mandatory – in fact, epidemiologists, physicians, and advocates working together used that science to change laws and educate parents so that today using infant car seats is almost universal in the United States. Continue reading →

Call for Entries: International Mental Health Research Organization Brainstorm Essay Contest

The International Mental Health Research Organization is inviting you to submit essays about neuropsychiatric research and national mental health policy for their 2013 Brainstorm Contest. The best essay will snag the author two tickets to the IMHRO’s Music Festival for Mental Health. These tickets get you entry to the scientific symposium, reception, concert and dinner at the Staglin Family Vineyard on September 7, 2013. Continue reading →

A Weekly Advocacy Message from Mary Woolley: Additions to the Sequestration Files

Dear Research Advocate:

On Wednesday, the House Appropriations agriculture subcommittee approved the funding bill that includes the Food and Drug Administration. The bill allocates nearly $100 million above the post-sequester levels. Unfortunately, the baseline budgets in the House are so low that this increase is still lower than FY12 FDA funding. We must not fall into the trap of lowering our expectations and applauding an artificial victory. The true mark of success is funding that keeps up with need. We must keep working.

As demonstrated particularly by the 18.6% cut targeted for the House LHHS appropriations FY14 budget, the pressure to shrink government by slashing discretionary spending shows no sign of abating. This pressure continues despite the damage nationwide in furloughs, layoffs, shuttered labs, patients turned away from clinical trials, and uncertainty around the ability of federal agencies to accomplish the basic government functions that help sustain an advanced society.

Speaking of mounting evidence against consequence-blind budget cuts, the lab that quickly identified the ricin toxin in letters sent recently to elected officials is CDC-funded. The Spokane (WA) Regional Health District Bioterrorism Lab is threatened with closure due to budget cuts (read more in the Homeland Security News Wire report). Of course it’s not only ricin-laced letters that must be stopped in their tracks. For example: The president has declared an emerging respiratory infection from the Middle East (known as MERS-CoV) a “potential public health emergency.” How can we expect the CDC to be effective in identifying, preventing and combating this or other global threats without the resources needed to do its job? Continue reading →

One in three seniors dies with Alzheimer’s or dementia

A new report from the Alzheimer’s Association reveals that one in three seniors suffer from some form of dementia or Alzheimer’s by their death. Deaths attributed to Alzheimer’s and dementia have increased 68% from 2000 to 2010.

Harry Johns, president and CEO of the Alzheimer’s Association and Research!America Board member, said in an Alzheimer’s Association release  that “urgent, meaningful action is necessary, particularly as more and more people age into greater risk for developing a disease that today has no cure and no way to slow or stop its progression.”

USA Today reports that the number of people with Alzheimer’s disease is expected to nearly triple by 2050, resulting in an increasing burden on medical costs and caregivers. Currently, there is no way to prevent or slow the progression of Alzheimer’s or other types of dementia.

With growing health care costs consuming the federal budget, policy makers are considering ways to reduce the cost of Medicare and Medicaid. The Alzheimer’s Association predicts that the direct cost of caring for individuals with Alzheimer’s will total more than $200 billion in 2013 alone, with nearly $150 billion of that spending expected to come from Medicare and Medicaid. Increased investments in medical and health research will help improve the treatment and prevention of dementia and Alzheimer’s disease.

“We have wanted to see a $2 billion commitment to research, because we’ve seen what has happened in diseases like HIV/AIDS when a big financial commitment is made,” said Maria Carrillo, PhD, vice president of medical and scientific affairs at the Alzheimer’s Association, in the article. Over the same 10-year period that saw an increase in Alzheimer’s deaths, HIV/AIDS related deaths decreased 42%, according to the Alzheimer’s Association study.

This report shows that now is not the time to cut back on America’s investment in biomedical and health research. Contact your representatives and urge them to make research for health a higher national priority.

A Weekly Advocacy Message from Mary Woolley: Inaugural topics?

Dear Research Advocate,

President Obama delivered a comprehensive plan for stemming gun violence yesterday, identifying, among other components, a renewed role for federally funded research. (Prohibitions enacted by Congress in the mid-1990s and expanded in 2011 have largely prevented federal agencies from funding firearms-related research.) An executive memorandum signed by the president on Wednesday directs CDC to conduct research on the causes of gun violence and ways to prevent it. Restrictions on research that informs federal policy are counterproductive to sound governance. With the benefit of research findings, policy makers can identify the most effective strategies for preventing firearm violence. Research!America applauds the president and joins all those who oppose restrictions on research for health. A national focus on ending gun violence will surely be a topic addressed by the president in his second inaugural address on Monday.

On the budget front, which the president will almost certainly address in his remarks, the drawn-out, kick-the-can-down-the-road approach to avoiding fiscal chaos is already taking a deep toll on our nation’s core government functions, including medical research. This message was delivered loud and clear this week in Forbes, in a piece called “Congress is Killing Medical Research” by Dr. Steven Salzberg of Johns Hopkins School of Medicine. Share this terrific editorial with your networks, and make sure your elected officials have read it too! You can use our web tool to find contact information for your federal representatives. The damage of the current fiscal situation was also called out in an article by Richard Craver in the Winston-Salem Journal, describing how Wake Forest Baptist Medical Center is being hit with a “triple whammy.”

In an interview with Politico, Dr. Francis Collins, director of the NIH, said sequestration would deal a “profound and devastating blow” to medical research. In 2011, the NIH budget was reduced by 1.5% and has continued to lose ground to inflation, which has eroded the agency’s ability to support lifesaving research by 20% since 2003. Dr. Collins also highlighted shrinking grant success rates; now just 1 in 6 applications are funded. This has a terribly demoralizing effect on young researchers and patients alike. Email your representatives now, and urge them to end sequestration once and for all.

Will the president use the platform of the inaugural address to underscore the importance of health and medical research? From preventing gun violence to ending the costly scourge of Alzheimer’s and so many other ailments, there are profoundly important reasons to assign a top priority to solutions research can and will identify, given adequate support. Advocates for research look to the president to take a leadership role; so does the American public, 72% of whom want biomedical and health research to be a priority for the president and for the new Congress in its first 100 days.

Sincerely,

Mary Woolley

A Weekly Advocacy Message from Mary Woolley: Going Viral as we Face the Next Cliff

Dear Research Advocate,

The two-month reprieve from sequestration agreed to as part of the “deal” to avert the fiscal cliff is a partial victory for all who worked hard to save research, giving us much-needed additional time to make our case.  We need be smart in using that time well,  because the delay was paid for through a combination of new revenue and spending cuts that could further drain the pool of dollars used to fund research. The fact that many conservative members of Congress expressed outrage that the fiscal cliff deal didn’t include larger spending cuts underscores this point. The debt ceiling will need to be raised within the next two months, adding fuel to the fire. And efforts to pass a budget for fiscal year 2013 rather than rely on a full-year continuing resolution throws another variable into the mix.

The bottom line is that the scenario for the next few months leaves science quite vulnerable, as reported in Scientific American, in which Research!America VP Ellie Dehoney is quoted. The palpable uptick in articles and opinion pieces raising awareness about the ongoing threat to research from a wide variety of stakeholders, including the Huffington Post piece by Research!America Board member Dr. Victor Dzau, president and CEO of the Duke University Health System, must continue; in fact we have to go into overdrive. In my last letter, I shared a CBS Evening News segment we worked to arrange about the impact of sequestration – I’m told it has gone viral! Please keep the momentum going by sharing it with your networks.

As you may know, Rep. Jack Kingston (R-GA) has been named chairman of the Labor, Health and Human Services, Education, and Related Agencies Appropriations Subcommittee, which sets funding for NIH, CDC and AHRQ. Rep. Kingston previously chaired the subcommittee on Agriculture, Rural Development, and the Food and Drug Administration. He was supportive of increases for FDA despite the budget-cutting pressure that faced the 112th Congress. Rep. Robert Aderholt (R-AL) has been named chairman of the agriculture subcommittee. Rep. Aderholt has demonstrated an interest in combating disease and disability. We look forward to working with these leaders and their Democratic counterparts to secure the resources that research-related agencies need to fulfill their multi-faceted missions.

In the wake of the tragedy in Newtown, the White House is looking for feedback on anti-violence strategies from organizations in the mental health community. The email address is policyideas@ovp.eop.gov. Note that the deadline is January 5. The Cure Alliance for Mental Illness has launched a petition calling on Congress and the president to increase funding for mental illness research. Our community will have an important role to play in ensuring that time does not dilute the urgency behind efforts to reduce violent acts like that in Newtown. Research is undoubtedly part of the answer.

Sincerely,

Mary Woolley