Monthly Archives: March, 2014

Statement by Research!America President and CEO Mary Woolley on John Edward Porter Neuroscience Research Center Building Dedication

Research!America members and partners extend warm congratulations to Research!America Chair The Honorable John Edward Porter for his well-deserved recognition by the National Institutes of Health (NIH) with the dedication of the Porter Neuroscience Research Center. Our nation has benefited from Mr. Porter’s leadership in advancing medical and health research as chair of the House Appropriations Subcommittee on Labor, Health and Human Services, and Education during his tenure in Congress, and as an indomitable force in the research advocacy community. As a U.S. representative, he worked across the aisle to cultivate champions for research, articulating the societal and economic benefits of medical innovation. Porter also spearheaded efforts to double the NIH budget, the largest funding increase in the agency’s history. As Research!America’s chair, he has propelled the organization’s mission forward by igniting a passion for medical research advocacy among scientists, patient advocates, industry partners and the academic community. His deep commitment to convincing policy makers that medical research must be funded at the level of scientific opportunity is unmatched, earning the respect of congressional colleagues and leaders in all sectors. For his dedication to making research for health a much higher national priority, we salute him.

 

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A Weekly Advocacy Message from Mary Woolley: The role of advocates in the appropriations process

Dear Research Advocate:

There is still time — if you act quickly — to urge your representative to sign on to the House letter authored by Representatives McKinley (R-WV-01), Davis (D-CA-53), Carson (D-IN-07) and King (R-NY-02) urging more support for NIH — it will be finalized by close of business today. A similar Senate letter, authored by Senators Casey (D-PA) and Burr (R-NC), will be finalized Tuesday, April 1; ask your senators to sign on today!

An appropriations mechanism known as a “tap” made the news Tuesday when, during a hearing on NIH, Members of Congress asked advocates questions about the use of a tap by the Department of Health and Human Services (HHS) to move money from the NIH appropriation to fund the Agency for Healthcare Research and Quality (AHRQ) and for other uses. While it can sound as though HHS makes this allocation on its own initiative, actually it is the Appropriations Committee that has determined to fund AHRQ in this way, rather than funding it as an independent agency or otherwise. Bottom line, the funding mechanism isn’t what’s at issue here — the real question is whether AHRQ serves the interests of Americans. And it certainly does. As noted in our testimony submitted for the hearing at which the tap issue was raised, AHRQ supports lifesaving, quality and efficiency-enhancing health care research. Like NIH, AHRQ meets our nation’s need for basic non-commercial knowledge, while the private sector finances the critical, commercial R&D that brings final products to the market.

Continue reading →

Testimony to the House Appropriations Labor-HHS-Education subcommittee

On March 25, Research!America submitted testimony to the House Committee on Appropriations Subcommittee on Labor, Health and Human Services, Education and related agencies concerning FY15 appropriations for the National Institutes of Health, Centers for Disease Control and Prevention and Agency for Healthcare Research and Quality:

The National Institutes of Health (NIH), the Centers for Disease Control and Prevention (CDC), and the Agency for Healthcare Research and Quality (AHRQ) play pivotal roles in combating disabling and deadly health conditions. Moreover, the funding, or lack of it, allocated to these agencies will bear on our nation’s ability to compete in key export markets within the global economy, foster business development that grows and maintains jobs across the country, meet our solemn obligations to wounded warriors and support troops on the ground, combat deadly medical errors, and protect our nation against pandemics and emerging health threats. The stakes truly are that high.

Read the full testimony here.

Urge Your Senators to Support NIH by Signing the Casey-Burr Letter for Medical Research

Given that the budget allocated to the National Institutes of Health (NIH), which funds the non-commercial, basic medical research required to develop new medical treatments and cures, is actually lower this year than it was in 2012, it has never been more important to fight for NIH funding. To help ensure that this unique federal agency receives the resources needed to support research at universities, hospitals and other research institutions across the country, Sens. Richard Burr (R-NC) and Robert Casey, Jr. (D-PA) are circulating a sign-on letter in support of critically needed funding for NIH.

Take action now! Contact your senators and urge them to sign on to this bipartisan letter.

World TB Day

PrintToday is World TB Day.

It is a day that gives us each the space to better understand the magnitude of the TB threat, mourn the loss of the more than 1 million people worldwide who die of TB each year, recognize the tragic consequences for their loved ones and for economic stability in impoverished nations, and express gratitude for those who conduct TB research, finance and deploy on-the-ground interventions, and advocate for the resources needed to conquer this vicious killer.

TB is the second most common cause of death from infectious disease, after HIV/AIDS. In 2012, approximately 8.6 million developed TB and 1.3 million died from the disease, with the death rate particularly high among HIV-positive patients.

There is good news on the TB front: infection rates have been falling for a decade and the mortality rate has dropped 45% since 1990. These results are in line with the millennial development goals, which set TB control metrics for 2015. Unfortunately, progress against other targets is lagging, including a slower than hoped for reduction in the prevalence of active TB and highly disappointing results in the diagnosis and treatment of multi-drug resistant TB (MDR-TB).

In the US, it’s far too easy — and a dangerous mistake — to dismiss the significance of tuberculosis. It is true that gone are the days when TB was prevalent in the US, the days when Americans were quarantined to reduce the infection rate and sent to sanitariums for treatment that sometimes worked…and too often didn’t. But with global travel, TB is entering our country, and with drug-resistant forms of the infection spreading, American lives are at risk. There have even been cases reported of totally-drug resistant TB, which means that resistance has been detected in every known treatment. The implications of an outbreak of totally drug resistant TB in the US are as ominous as they are in developing countries, particularly for those with compromised immune systems.

So what’s next? Our role as a global leader and our identity as a compassionate people underscore the importance of robust American support for the Global Fund to Fight AIDS, Tuberculosis and Malaria, as well as robust appropriations for USAID and other on-the-ground efforts to combat TB. For sake of Americans and the global community, the National Institutes of Health and the Centers of Disease Control and Prevention must be resourced sufficiently to develop new TB treatments, identify new prevention strategies, and assist in global TB control.

And it is important to acknowledge philanthropic and private sector efforts to combat TB, including the work of RESULTS, the Gates Foundation, and companies such as Johnson and Johnson.

When 1.3 million people die each year from an infectious disease that poses a renewed threat to the United States, waging war against that disease is not an option, it is an imperative.

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

Urge Your Representative to Support NIH

by Signing the McKinley-Davis-Carson-King Letter for Medical Research    

Given that the budget allocated to the National Institutes of Health (NIH), which funds the non-commercial, basic medical research required to develop new medical treatments and cures, is actually lower this year than it was in 2012, it has never been more important to fight for NIH funding. To help ensure that this unique federal agency receives the resources needed to support research at universities, hospitals and other research institutions across the country, Representatives Peter King (R-NY), Susan Davis (D-CA), Andre Carson (D-IN), and David McKinley (R-WV) are circulating a sign-on letter in support of critically needed funding for NIH.

Take action now! Contact your representative and urge them to sign on to this bipartisan letter.

Take Action!

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.

Meeting with Legislative Staff Members

Excerpt of a guest post by Research!America Manager of Policy and Advocacy Caitlin Leach, published in the Fight Colorectal Cancer blog to help prepare their advocates for their Hill day, Call-on Congress, on March 18.

CLAs you prepare for your trip to Call-on Congress in Washington, make room in your luggage for your stories, your experiences and your hope for the future. Your perspectives bring legislative issues to life. Anecdotes about colorectal cancer’s impact on you and your community are essential for your representatives in Washington and their staff members to hear.

Members of Congress make decisions by weighing the facts and evidence, but also based on the insights their constituents share about how policy impacts their lives. Adding your voice to the conversation is critical to successful advocacy.

Meeting with Legislative Staff

While you are in Washington this week, many members of the House and Senate will be in recess — meaning the Members are back home working in their districts. Advocating on the Hill during a congressional recess is just as important as advocating during a busy in-session week.

While you might not get to meet your representative and have a photo-op shaking hands, you will get to meet with the brain trust – congressional staff members. This will be during a time when they have less-hectic schedules and more time to devote their attention to the issues.

Members of Congress are supported by a team of outstanding staffers who advise them on a variety of policy areas covering everything imaginable. You are likely to meet with a staffer; often a legislative assistant (LA), who handles health or related issues. These individuals are part of a legislative staff who work tirelessly behind the scenes to propose ideas for new policies, brief the representative on issues and take dozens of meetings each week with interest groups and constituents.

These are the policy experts.

Read the full blog post here.

A Weekly Advocacy Message from Mary Woolley: Celebrating champions

Dear Research Advocate:

Research!America’s annual meeting and 25th anniversary Advocacy Awards Dinner were very special. At our annual meeting we heard thoughtful remarks from Rep. David Joyce (R-OH-14) about the importance of research as part of investing in the future of America. Kathy Giusti, founder of the Multiple Myeloma Research Foundation, epitomized the power of patient advocacy, making the seemingly impossible happen through her commitment to overcoming barriers to finding a cure. Our awards dinner showcased the commitment and impact of remarkable champions for science and for medical progress. Congressmen Frank Wolf (R-VA-10) and Chaka Fattah (D-PA-02); Glenn Close, Jessie Close and Calen Pick; Dr. Reed Tuckson; Kathy Giusti; Dr. Leroy Hood; and the Progeria Research Foundation were honored not only for what they have accomplished but for demonstrating that such accomplishments are possible. All of us draw from their strength. Click here to view the commemorative booklet and our 25th anniversary video and click here to view photos from the dinner.

Champions matter. We’re witnessing renewed calls for significant annual increases for agencies central to medical progress.

  • On Tuesday, Assistant Senate Majority Leader Dick Durbin (D-IL) introduced the American Cures Act, which would establish a trust fund to supplement annual appropriations, enabling yearly increases of at least 5% — adjusted upward for growth in GDP — for NIH, CDC, the VA, the Department of Defense health programs and other key agencies.
  • Senate Appropriations Chairwoman Barbara Mikulski (D-MD) has raised a similarly compelling plan for increasing annual appropriations for NIH by 5% plus medical research inflation to compensate for the inflation-adjusted declines NIH has seen in recent years.
  • Sen. Elizabeth Warren (D-MA) is working on science funding legislation; our awardee, Congressman Fattah, and Sen. Tammy Baldwin (D-WI), have bills pending that are designed to accelerate medical progress.
  • Last but certainly not least, Congress made a bipartisan statement about the importance of medical research by passing legislation in both houses to increase it. House Majority Leader Eric Cantor (R-VA) developed the plan to take unused funds from those contributed by taxpayers to Presidential campaigns, to increase funding for pediatric research at NIH.  Continue reading →

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.

Tell Congress to Make Medical Progress a High Priority in the 2015 Appropriations Process

The House and the Senate have begun deliberations on funding levels for NIH, CDC, AHRQ, NSF and FDA for FY15. Pressure to cut federal spending this midterm election year is enormous, and we need advocates to reach out to their representatives. Members in both houses of Congress are accepting input from constituents on which priorities they should fight for. Let your representatives know that combating disabling and deadly diseases is a national imperative, and funding for the agencies committed to this fight should be included on their list of appropriations priorities. Contact them TODAY and share this alert on Facebook, Twitter and with your networks.

Take action!

A Weekly Advocacy Message from Mary Woolley: Dead on Arrival

Dear Research Advocate:

The president’s budget for FY15 was released Tuesday. While mostly symbolic, the president’s funding recommendations often serve as the “first bid” in the negotiations that result in agency funding levels. That is why the president’s proposals for the agencies that collectively drive medical progress and play such a pivotal role in the health and safety of Americans are of such concern.

The president’s budget proposes only slight increases for NIH, FDA and NSF in FY15, and significant cuts for CDC and AHRQ. As I said in The Huffington Post and in other media, President Obama’s budget does not reflect the potential the U.S. has to advance scientific discovery or medical progress; he sets the bar — and the nation’s sights — much too low! At a time when our global leadership is on thin ice, America needs a bold plan to advance research and innovation. See Research!America’s statement on the president’s budget here. Continue reading →

Statement by Research!America President and CEO Mary Woolley on President Obama’s FY15 Budget

The president’s budget does not reflect the potential the U.S. has to advance scientific discovery. While welcome, the minor increases for the National Institutes of Health, the National Science Foundation, and the Food and Drug Administration diminish our ability to accelerate the pace of medical innovation, which saves countless lives, helps our nation meet its solemn commitment to wounded warriors, and is a major driver of new businesses and jobs. We’re also disappointed with reduced funding for the Agency for Healthcare Research and Quality and the Centers for Disease Control and Prevention. AHRQ and CDC cannot be neglected in the name of deficit reduction, and it is truly disturbing that the president’s budget treats those crucial agencies in that manner. The capacity to improve health outcomes and health care efficiency, stem the explosion in chronic diseases, and protect the security of our nation in the face of lethal, drug-resistant infections and international pandemics all hinge on the expertise and resources available to these agencies. We must expand investigations into cancer clusters, deadly meningitis outbreaks and research crucial to bioterrorism preparedness, not reverse course. These funding levels also jeopardize our global leadership in science — in effect ceding leadership to other nations as they continue to invest in strong R&D infrastructures that have already begun to attract our best and brightest innovators. We simply cannot sustain our nation’s research ecosystem, combat costly and deadly diseases like Alzheimer’s and cancer, and create quality jobs with anemic funding levels that threaten the health and prosperity of Americans. The administration and Congress must work together to boost funding for federal research and health agencies in FY15 and end the sequester in order to truly meet the level of scientific opportunity.