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.
World TB Day
Today 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.
2014 Advocacy Awards Dinner
On 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.
“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.
As 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.
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
Julie 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.
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.
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