Category Archives: Clinical Research

Hispanic Heritage Month: The Changing Face of Health Care

By Israel Rocha, CEO, Doctors Hospital at Renaissance

Israel Rocha_FinalSeptember 15 marks the beginning of Hispanic Heritage Month, a time to pay tribute to the generations of Hispanics who have enriched America’s history. It’s also an important time to consider how this community can be further empowered to make important contributions, particularly in the future of health care.

Research demonstrates that certain diseases disproportionately impact the Hispanic community, including diabetes, liver cancer, cervical cancer and HIV/AIDS. Clinical trials help researchers find better ways to diagnose, prevent and treat these diseases and others. However, Hispanics are significantly underrepresented in clinical trials. Despite representing 16 percent of the U.S. population, Hispanics comprise only 1 percent of clinical trial participants.

Given this historic underrepresentation, there is tremendous opportunity to boost clinical trial participation within diverse patient populations. According to a July 2013 study by Research!America:

  • More than 40 percent of Hispanics greatly admire clinical trial participants.
  • More than 2/3 of Hispanics would be willing to share health information to help researchers find better ways to prevent and treat disease.
  • Nearly half of the Hispanics polled rate a physician’s recommendation to participate in a clinical trial as very important.

Continue reading →

Medical Research: It’s about you and me

collage fact sheetResearch!America’s newest fact sheet series highlights the personal stories of medical research and the importance of increasing the NIH budget in FY15. We hope you will share these fact sheets with your representatives or congressional candidates, or take it with you on Hill or in-district visits. No one who reads these stories can doubt the significance of medical progress. A stronger investment in research is needed now more than ever!

Here are their stories:

What new discoveries are we delaying and missing when we slow the pace of medical and health research?

We’ve made progress. But the funding to sustain it is eroding.

A Weekly Advocacy Message from Mary Woolley: American values at stake

Dear Research Advocate:

My colleagues at Research!America have shared the role as author of our weekly letter during my recent sabbatical. My thanks to them for providing timely and actionable information to our wide network. As I am “re-entering” the Washington space, I have been struck by (1) the significantly worse condition of the roads — potholes everywhere, and now even sinkholes in DC! I’ve been in several global capitals this spring, including in less-developed countries, and DC doesn’t look good in comparison. Via recent domestic travels, I can attest to the poor condition of our roads nationwide, taking a toll on vehicles and our economy, while eroding public confidence in government. Public goods — like infrastructure, education and science — that we have long nurtured through steady investment cannot continue to be resource-starved without dire consequences. No wonder the American public is angry at Washington! (2) I have come back just in time to witness the appropriations process grind to a halt. The clock is ticking down toward August recess, and appropriators have a new excuse for failure to take action, i.e., the migrant children emergency. There will always be national emergencies. By definition they are unpredictable, and some are more complex than others; it nonetheless cannot be acceptable for Congress to grind to a halt when one occurs. Continue reading →

Clinical Research

Letter to the editor by Research!America VP of Communications Suzanne Ffolkes published in The New York Times in response to article, Labs Are Told to Start Including a Neglected Variable: Females” (May 14, 2014)

In addressing gender bias in biomedical and clinical research, it’s also important to close gaps in clinical trial participation among minorities to understand how different segments of the population respond to various treatments. When asked if they or someone in their family had ever participated in a trial, only 17 percent of Hispanics, 15 percent of African-Americans and 11 percent of Asian-Americans said yes in polling commissioned by Research!America, a nonprofit advocacy alliance.

This is primarily rooted in a history of distrust and lack of awareness, but attitudes appear to be evolving as more minorities express a willingness to participate in trials if recommended by a doctor or a health care professional.

Boosting enrollment among women and ethnic groups is critical to achieving better health outcomes for all Americans.

2014 Advocacy Awards Dinner

trofeoOn March 12, Research!America honored extraordinary leaders in medical and health research advocacy during the 2014 Annual Advocacy Awards at the Andrew W. Mellon Auditorium in Washington, DC.

We extend our congratulations to the honorees: Reps. Frank Wolf (R-VA) and Chaka Fattah (D-PA); actress Glenn Close and her family for their work to end the stigmas and misunderstandings surrounding mental illness; Leroy Hood, MD, PhD, president of the Institute for Systems Biology; Kathy Giusti, founder and CEO of the Multiple Myeloma Research Foundation (MMRF); Reed Tuckson, MD, managing director of Tuckson Health Connections; and The Progeria Research Foundation (PRF).

While much has been done to advance research, we have a long way to go.

13130132595_bc0c860475_o“Few out there seem to connect the dots to understand that federal funding is essential to develop the foundation of knowledge which is essential for American enterprise in developing the products and therapies that make our lives longer, healthier, and happier,” said Research!America Chair and former Member of Congress The Hon. John E. Porter in remarks at the Dinner. “There’s nothing more important to our future than investments in science, research, innovation and technology.”

And we agree! Contact your representatives and tell them to make research funding a higher priority.

Distinguished guests included current and former members of Congress and administration officials. Sen. Angus King (I-ME), Rep. David Price (D-NC), Rep. Nita Lowey (D-NY) and Rep. Scott Peters (D-CA), joined the celebration. Research!America board members,  The Hon. Mike Castle, The Hon. Kweisi Mfume and The Hon. Patrick Kennedy also attended the event along with former Congresswoman Mary Bono , former HHS Secretary The Hon. Dr. Louis Sullivan, NIH Director Dr. Francis Collins, NSF Acting Director Dr. Cora Marrett, and PCORI Executive Director Dr. Joe Selby.

Click here to see photos.

What would it take to achieve a cancer-free world?

Excerpt of an article by Research!America VP of Communications Suzanne Ffolkes and Communications Specialist Anna Briseno, published in Elsevier Connect.

A panel hosted by Research!America and the Pancreatic Cancer Action Network discusses challenges and opportunities for advancing cancer research

RA_PANCAN_PanelistsJulie Fleshman’s journey to improve outcomes for pancreatic cancer patients was inspired by her father, who died four months after receiving the diagnosis. That was in 1999. Since then, she’s been advocating for research to support early diagnosis and better treatments.

“That passion drives me every day – anger mixed with hope and optimism of the future,” she said.

Fleshman, President and CEO of the Pancreatic Cancer Action Network (PanCAN), made her remarks on a panel at the New York Academy of Sciences February 27.

Thought leaders from industry, academia, health economics and patient advocacy discussed challenges and opportunities for advancing cancer research and the prospects for a future where cancers are rendered manageable or even eradicated. They examined various aspects of cancer research and patient advocacy from a regulatory, policy and clinical standpoint. They spoke of the challenges posed by regulatory barriers and the role of advocates in fostering medical innovation. And they said there was critical need for collaboration among all stakeholders – including representatives from pharma, medicine, academia, the government and patient organizations – to accelerate medical progress.

The event – called A World Free from Cancer: A Road Paved with Medical Innovation – was hosted by Research!America and PANCAN.

Fleshman began the discussion by talking about the rise of the patient advocate who plays “an extremely important role in helping to change outcomes and … raise the awareness in the public, which drives public and private dollars and moves Congress to action.”

Laurie MacCaskill, a seven-year pancreatic cancer survivor, agreed. “Luck shouldn’t play a role in why I’m alive,” she said.

Dr. Amy Abernethy suggested that society should work toward better matching treatments and patients so resources aren’t wasted. She highlighted the need for extensive risk and benefit analysis to maximize opportunities for improved healthcare delivery.

MacCaskill agreed, noting it’s important for cancer patients to know what treatment options are available that best suit their needs. She said stakeholders need to work together to develop solutions that increase access.

Read the full article here.

More African Americans need to participate in clinical trials

Excerpt of an op-ed by David Satcher, MD, PhD, honorary chairman of the African American Network Against Alzheimer’s, former U.S. surgeon general and Research!America’s 2007 Raymond and Beverly Sackler Award for Sustained National Leadership award winner, published in The Washington Post.

DavidSatcher1Every February our society measures its progress in the march toward equality as part of Black History Month. But seldom do we discuss inequality in health, an injustice that continues to plague African Americans.

A whole host of health disparities remains unaddressed, including Alz­heimer’s — a disease that African Americans are two to three times more likely to develop than non-Hispanic whites. This disparity is rooted as much in our cultural heritage as in our genes.

For years, studies have found that African Americans have a profound mistrust of doctors and scientists. Consequently, we participate in clinical trials at far lower rates than other ethnic groups, which helps to perpetuate the sort of disparities seen with diseases such as Alzheimer’s. This fear of clinical trials dates to a dark chapter in our shared history: the Tuskegee syphilis experiments.

The Tuskegee study was an infamous clinical experiment in which researchers and the U.S. Public Health Service led African American men with syphilis to believe that they were receiving free medical care while, unbeknown to them, they were being left untreated so scientists could study the effects of prolonged syphilis. After the Associated Press exposed the truth, sparking a public outcry, the U.S. government ended the study in 1972, 40 years after it began.

The 1974 National Research Act set new guidelines for the use of humans in clinical studies. In 1997, the Clinton administration worked with higher education institutions to usher in new training requirements and ethical standards for physicians, researchers and medical students as part of an official apology President Bill Clinton issued on behalf of the nation to the victims of the experiments. While these standards go a long way toward helping to prevent future such experiments, much damage was already done among African Americans.

Read the full op-ed here.

A Weekly Advocacy Message from Mary Woolley: Inspiration from Sochi

Dear Research Advocate:

People everywhere are captivated by the world-class athletes competing at the Winter Olympics. The personal commitment, dedication and motivation on display is certainly an essential ingredient for medalling, but it is not sufficient: Each nation fielding a team must commit to supporting sustained excellence. And both the public and private sectors play a role. There are some interesting parallels to science and innovation — we don’t see it in the public eye every day but when it comes to the fore, it’s the kind of success that affirms the human spirit in a compelling way. When lives are saved with a new therapy or new vaccine, we all take heart and we celebrate, perhaps not realizing that it took years of training, teamwork and ‘practice’ to arrive first at the finish line. What it takes to remain internationally competitive in any global arena — very much including science and innovation — is the combination of well-trained and dedicated people at the top of their form, plus a firm national commitment over a many-year period.

In journalistic coverage that we don’t see often enough, a special report in Monday’s Washington Post describes how government-funded basic research has led to new cancer therapies and a potential “cancer vaccine” currently undergoing testing in the private sector. This is a perfect example of the well-honed teamwork that is our public-private sector research enterprise. But without public sector financing, private sector capital and a commitment to STEM education, the pipeline will not only dry up, its infrastructure will crumble. As Congress readies itself to receive and respond to the president’s budget in early March, email your representatives in Washington to let them know that when it comes to medical research and innovation, the U.S. must continue to go for the gold. That means recommitting to global leadership.

With long-standing champions of science retiring, spurring that commitment will undoubtedly be a steeper climb. Congressman Rush Holt, a physicist whose legacy in Congress as a champion for science, research and STEM education is truly superlative, announced his retirement on Tuesday. His is the latest retirement in a string that reminds us how pivotally important one Member of Congress can be in advancing the best interests of our nation, and it underscores the importance of cultivation of new champions.

Tomorrow morning several NIH directors (NINDS, NICHD, NHLBI and NIAMS) will appear on C-SPAN’s Washington Journal. The call-in program airs from 7:30 – 9:30 a.m. Eastern. I hope you take advantage of participating in this nationally broadcast program. Ask the directors what they think it will take to assure gold-medal winning research now and in the years ahead! Here are the Washington Journal’s phone numbers for calling in tomorrow:

  • Democrats: 202-585-3880
  • Republicans: 202-585-3881
  • Independents: 202-585-3882
  • Outside U.S.: 202-585-3883

I hope to hear your voice on the air!

Sincerely,

Mary Woolley

A Weekly Advocacy Message from Mary Woolley: Promising process; disappointing progress

Dear Research Advocate:

The omnibus appropriations bill about to become law demonstrates that bipartisanship and pseudo-regular order is achievable. We won’t know for sure if we have true “regular order” until Congress proceeds through the FY15 appropriations process in a timely manner — something that hasn’t happened for many years. The importance of regular order is that the public’s interests are heard from in hearings, and every Member of Congress participates in priority-setting instead of only having the opportunity to cast a single up-or-down vote. Regular order is worth working toward, since at least one priority we all care about did not fare well in the omnibus.

The omnibus has failed to fund NIH at a level that fully reverses the impact of sequestration on the agency’s baseline funding level, much less establishes a growth trend that can fully unleash the potential inherent in the sequencing of the human genome and other research breakthroughs. As Drs. Paul Stoffels and Alan Leshner make crystal clear in an op-ed in Politico Magazine, we can’t settle for “better than sequestration.” If our nation wants to thrive, we need to grow our investment in science. Between 2010 and 2013, U.S. federal investments in science fell to less than 1% (.82%) of the economy. That’s the lowest it’s been in 50 years! As you know, this comes at a time when foreign nations are rapidly ramping up their R&D programs and taking a page from our playbook. Remember that global competitiveness in medical research is a pivotal determinant of our global economic competitiveness overall. We aren’t just talking about the future of our scientific enterprise, we are talking about the future of our economy. Are we truly willing to cede leadership in global R&D? (See also our statement cited in The Hill and other media outlets, as well as my interview today with UDC.) Continue reading →

Top 10 Most Popular Research!America Blog Posts of 2013

As the year comes to an end, let’s revisit the top ten most popular Research!America blog posts in 2013 (based on page views) that highlighted the importance of making research for health a higher national priority. We’re thankful for our many outstanding guest bloggers including early career scientists, leaders of industry, academia, patient groups and scientific societies who strongly believe in the promise of scientific discovery and medical innovation to build healthier lives.

10) Millennials Move On

August 14: Guest blog post by Tyler Wiechman on why the millennial generation is leaving science, from his personal experience. “If funding was more available for these VITAL research programs, students of this generation would be much more optimistic about their personal future in clinical research and able to get into academia or the industry of their choice.” Read the post, here.

9) The Science Policy Group at the University of California, San Francisco

July 22:   The Science Policy Group at UCSF speaks out about the “crisis situation” brought about by the sequester. “We have observed a number of our postdoctoral colleagues leave UCSF due to the budgetary constraints both they and their PIs were experiencing.  The immediate consequences, such as sudden lay-offs and premature termination of promising research careers, are obviously tragic.” Read the post, here.

8) Research!America Hosts NTD Forum at Tulane University

May 17: Neglected tropical diseases (NTDs) commonly associated with the developing world, have been identified in many parts of the country including Louisiana.  Research!America hosted an NTDs event at the Tulane University School of Public Health and Tropical Medicine in New Orleans with health and policy experts. Read highlights of the event, here.

7) Research!America’s Inaugural Advocacy Academy

September 19: Highlights of the inaugural Advocacy Academy which brought 12 postdoctoral researchers from across the U.S. for a two-day advocacy training program in Washington, D.C. that culminated in Capitol Hill visits with their representatives. Read the post (and see photos), here.

6) Public Health Thank You Day, November 25

November 6: Every year, Research!America and other leading health organizations take time to recognize the public health professionals across the country who protect us from disease and injury. The 2013 Public Health Thank You Day blog post describes the round-the-clock activities to address major health threats and promote good health. Learn more about the initiative, here.

5) Neglected Tropical Disease Research in Louisiana: Saving Lives and Creating Jobs

April 24:  Research!America produced two short compelling videos about neglected tropical diseases and patients with NTDs that were unveiled at the NTDs Louisiana event (see post #8). Watch the videos, here.

4) Top “disruptive technologies” that could revolutionize health care and research

May 30: Blog post about a McKinsey Global Institute’s report that identified 12 “disruptive technologies” that could be transformative for the U.S. economy. “It doesn’t take much imagination to see many of these technologies making an indelible mark on health care and public health.” Sound interesting? Read the post, here.

3) Announcing Research!America’s Inaugural Advocacy Academy

June 4: The third most popular post of 2013 was the announcement of the Research!America’s Inaugural Advocacy Academy which focused on engaging early-career scientists in research advocacy and science policy. The program is an opportunity for postdoctoral fellows to learn how to incorporate advocacy and effective communications into their role as a scientist. (see post #7).  Take a look, here.

2) Cuts to NIH research squeezes young scientists out

July 25: The second most viewed; op-ed by Abigail Schindler, PhD, postdoctoral fellow at the University of Washington, Department of Psychiatry and Behavioral Sciences and co-leader of the Seattle Forum on Science Ethics and Policy published in The Seattle Times. Abigail bemoaned the consequences of sequestration (across-the-board budgets cuts) to science and the careers of young scientists.  Read more here.

1) Heroes for scientific knowledge

October 23: Our most popular post of the year! Benjamin Caballero MS, a PhD candidate at the Albert Einstein College of Medicine (one of the Research Matters Communications Workshop participants) wrote this entry about the importance of scientists communicating their research to the public and policy makers.

“Science is in need of heroes.  It is important to realize that each and every one of us have a role and can become one. Inform yourself, ask questions to the experts and learn how your day-to-day life is benefited from the scientific endeavor. Be a part of human progress, become the hero science needs.”

 Read the post, here.

Top1

Stay tuned for 2014!

Majority of Americans Believe Another Government Shutdown Likely in Coming Months; Last One Harmful to Medical Research

New National Poll Reveals Many Respondents Predict China will Surpass U.S.
in Science and Innovation by 2020

ALEXANDRIA, Va.—December 3, 2013—Nearly two-thirds (65%) of Americans say it’s likely there will be another government shutdown in the months ahead as Congress continues to debate deficit and budget issues, according to a new national public opinion poll commissioned by Research!America and the American Society of Hematology. This sentiment is shared across party affiliations: Democrats (66%), Republicans (65%) and Independents (65%). There is also consensus across party lines that government dysfunction has consequences. A majority of Americans (57%) say the shutdown in October caused significant harm to many government-funded programs including medical research, defense and education. Democrats (68%) and about half of Republicans (49%) and Independents (51%) agree.

On the topic of sequestration, a plurality (44%) says Congress must tackle tax and entitlement reform to reduce the deficit instead of continuing the 10 years of across-the-board cuts; another 16% say sequestration is not the right way to reduce the deficit. Less than a quarter (23%) believe the across-the-board cuts are a way of ensuring that many government programs share the pain, and 17% say they’re not sure. In general, 62% of Americans say they’re concerned about the long-term effects of sequestration on advances in health care such as the development of new drugs and other treatments.

“Our poll demonstrates uneasiness among many Americans about the ramifications of deep spending cuts to programs that are critical to our health and well-being,” said Mary Woolley, president and CEO of Research!America. “Americans want Congress to reach a budget deal that protects medical and health research, at least in part because of concern that our nation is at risk of losing our global leadership position in science and innovation.” 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 →

Life According to Sam

SamNext Monday, October 21 at 9:00 pm EST, HBO will debut LIFE ACCORDING TO SAM, the story of Sam Berns, a young boy with an extremely rare and highly-rapid aging disease called Progeria, and his family’s 13-year fight to find a cure.

This film tells a story not only about the love of physician parents trying to save their son – it also portrays a winding journey throughout the scientific process and the pivotal role that medical innovation plays in our lives. In the film we see children with Progeria gather in Boston from around the world – all expected to live no longer than 13 years – to receive treatment and participate in a first-of-its-kind clinical trial.

The film’s Oscar®-winning Directors Sean Fine and Andrea Nix Fine have earned multiple awards for LIFE ACCORDING TO SAM, winning the “Best of Fest” at the AFI Docs Festival in Washington, DC; the Audience Award at the Nantucket and Martha’s Vineyard Film Festivals the Best Storytelling Award at Nantucket and Best Feature Documentary at the Woods Hole and Rhode Island International Film Festivals.

The Progeria Research Foundation, a Research!America member, is leading the fight to find better treatments – and ultimately the cure – for Progeria, the rare and fatal “rapid aging” disease affecting children around the world.

You can learn more online, visit their Facebook page and follow them on Twitter.

A Weekly Advocacy Message from Mary Woolley: Does Congress care if Nobel laureates of the future are put at risk?

Dear Research Advocate:

Like most Americans, we are alarmed by the ongoing government shutdown. Since the shutdown began, I have been in Georgia, Massachusetts and Ohio, speaking to business and academic leaders, state and local elected officials, philanthropic leaders, and working scientists. Everyone is outraged! Clearly, biomedical and health research — already compromised via sequestration — is not the only priority placed at risk by the impasse, but it is a critical one. From limiting access to clinical trials to undermining the ability to protect our food supply or investigate disease outbreaks, Americans are put at unnecessary risk when government employees are furloughed. We sent letters at the end of last week to Members of Congress and the president, urging action. We received responses from offices on both sides of the aisle: Many spoke passionately of their support for medical research; some hewed the party line; others lamented the budget impasse.

We are doing everything we can to keep the spotlight on the damage done to medical and health research when the government is shut down. When the public and its policy makers look back on the 2013 shutdown, we want them to remember which government functions most tellingly exemplified the cost — fiscal and societal — our nation incurs when the ability to function is derailed. Continue reading →

A Weekly Advocacy Message from Mary Woolley: Risky business

Dear Research Advocate:

What does the current political impasse in Washington have in common with deadly or disabling diseases? They will not cure themselves, and the harm escalates until the “patient” gets expert treatment. There is no place for miracle cures or wishful thinking. The solution isn’t what a given individual or party wants it to be, it’s what solves the problem. Right now, it’s by no means clear what or who will solve the problems — which now include the debt ceiling as well as the lack of funding to run the government. Fasten your seat belts for more turbulence between now and October 17th.

You may have heard that the House passed a bill yesterday to fund NIH, along with several other stand-alone appropriation bills (funding it at an unacceptably low level, I might add — below FY12 levels). Beyond the fact that this piecemeal, slow-walking avoidance tactic of finding a solution to the government shutdown is dead on arrival in the Senate and the White House, this “Sophie’s Choice,” cherry-picking approach to better health has no place in a functioning research and innovation ecosystem, and we spoke out against it. That said, it was gratifying that NIH was singled out as publicly popular and good to see the possibility of new champions emerging who recognize the importance of NIH funding during the floor debate on the bill. But make no mistake, had we and other advocates supported this ill-conceived measure, we would have been supporting the decline of science in this nation. Continue reading →