Tag Archives: NIH

Bold Public-Private Partnership aims to AMP-lify Medical Innovation

Image credit: National Institutes of Health

Image credit: National Institutes of Health

Technological advances have paved the way for researchers to access a wealth of data about the biological cause of disease. Yet translating these discoveries into treatments remains a challenge. Promising drugs often fail in late phase clinical trials, costing time and money, and leaving patients’ lives hanging in the balance. One reason is that the right biological targets were not chosen from the start.

To improve the current model for developing new diagnostics and treatments, the National Institutes of Health (NIH) and several biopharmaceutical companies and non-profit organizations formed the Accelerating Medicines Partnership (AMP), www.nih.gov/amp.  “The good news is that recent dramatic advances in basic research are opening new windows of opportunity for therapeutics…But this challenge is beyond the scope of any one of us and it’s time to work together in new ways to increase our collective odds of success,” NIH Director Francis Collins, MD said in a press release. “We believe this partnership is an important first step and represents the most sweeping effort to date to tackle this vital issue.”  Dr. Collins will be among the distinguished panelists at the “AMP-lifying Innovation” discussion on Wednesday, June 25 at the BIO International Convention in San Diego http://convention.bio.org/  #BIO2014 Continue reading →

Statement by Research!America COO Mike Coburn on Senate Labor-HHS-Education Appropriations Subcommittee Markup of FY15 Bill

The increase for the National Institutes of Health is a step in the right direction to accelerate medical progress but we cannot sustain our nation’s engine of discovery with dollops of fuel; a more robust investment is critical to maintaining our pre-eminence in science and saving lives. Researchers are closer to understanding ways to effectively treat and prevent Alzheimer’s disease, cancer, diabetes and other health threats that exact a tremendous financial and emotional toll on patients and their families. Yet federal funding has failed to keep pace with the level of scientific opportunity, and Americans are aware of the disconnect. More than half of those surveyed say elected officials in Washington are not paying enough attention to combating the many deadly diseases that afflict Americans, according to a poll commissioned by Research!America, and most agree that basic scientific research should be supported by the federal government. We applaud the leadership of Subcommittee Chair Tom Harkin in directing additional funds to the NIH. We hope that Congress will boost funding levels to at least $32 billion in FY15 and restore medical research and innovation as a source of hope, prosperity and national pride for all Americans.

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A Weekly Advocacy Message from Research!America: Flat won’t get the job done

Dear Research Advocate:

Today, Chairwoman Barbara Mikulski (D-MD) released the Senate’s 302(b) allocations, which were approved by the Appropriations Committee. As you know from last week, the House 302(b) allocation for the Labor-HHS subcommittee is approximately $1 billion less in fiscal year 2015 than it was in FY 14.The Senate’s allocation for FY 15 is roughly the same as it was in FY 14. The bottom line is that, as expected, we have our work cut out for us to achieve the increases needed for the National Institutes of Health (NIH) and our nation’s other health research agencies. Fortunately, Senator Mikulski and other leaders from both sides of the aisle understand the importance of investing in research to drive U.S. innovation.  That doesn’t reduce advocates’ workload, but it makes success more than a longshot.

Earlier this week, both the House and the Senate Appropriations subcommittees on Agriculture considered bills that would fund the Food and Drug Administration (FDA) in FY 15. The House version calls for a $23 million increase (less than 1%) while the Senate version provides a $36 million increase. While appropriators deserve credit for finding additional dollars for the FDA given overall FY 15 budget constraints, this agency’s responsibility for protecting the very safety of Americans requires more dollars than this.  Continue reading →

A Weekly Advocacy Message from Research!America: The good, the bad, and the ugly

Dear Research Advocate:

Congress continues to pay particular attention to – and make decisions bearing on – the pace of medical progress. To briefly count the ways:

The Senate Labor-HHS Appropriations subcommittee heard testimony yesterday from agency heads within HHS about the significance of health-related spending, including spending on medical and health research. Read our written testimony here.

Congressman Upton (R-MI-06), the Chair of the House Energy and Commerce Committee (which has jurisdiction over authorizing legislation for NIH, CDC, FDA and AHRQ) and Congresswoman Diana DeGette (D-CO-01), a member of the Committee, launched their 21st Century Cures initiative with a roundtable discussion focused on identifying what actions are necessary to maintain our nation’s place as the world’s innovation leader. While Reps. Upton and DeGette are champions of research who should be commended for working to strengthen U.S. medical innovation, there is always the risk that Congress will veer into micromanagement of NIH, stymie FDA’s efforts to ensure that private sector innovators are rewarded for ensuring the safety and efficacy of their medical advances, or “hold off” on providing the funding needed to accelerate medial progress until  longer-term strategies are in place. Your participation can help make this effort a success, and the initiative has established an email address you can use if you wish to give input: cures@mail.house.gov.

So that’s the good. Continue reading →

Medical Progress NOW Day of Action is tomorrow!

medprRemember that all day tomorrow, Tuesday May 6, is a social media Day of Action in conjunction with the Medical Progress NOW campaign. Join us on Twitter (#medprogressnow) and Facebook as advocates from around the nation ask Congress to focus on what can be done this year to accelerate medical progress, first and foremost by committing to a meaningful increase in funding for the National Institutes of Health in the FY15 appropriations process.  Share personal stories, relevant data and compelling visuals to make the case that insufficient funding costs lives.  Congress has the power to get NIH funding back on track. Help convince them to do it.

And please spread the word and share the link to the Day of Action toolkit with your professional and social networks for more information and sample messages.

A Weekly Advocacy Message from Research!America: Rallying more defenders of science

Dear Research Advocate:

In recognition of his many accomplishments as a champion for research, Research!America Chair and former Congressman John Edward Porter was honored by the National Academy of Sciences with the Public Welfare Medal, the Academy’s most prestigious award. This well-deserved acknowledgment of Porter’s tireless efforts to advance innovation and engage scientists in advocacy should motivate advocates to follow his lead and speak up about threats to our nation’s research ecosystem. Read our statement on the award ceremony here.

In his remarks, Mr. Porter noted that “political judgment should never be allowed to be substituted for scientific judgment.” This point was particularly well-timed as political attacks on science, particularly health services research, continue unabated.

A case study from Louisiana highlights the importance of health research in saving lives. Children’s Hospital in New Orleans had an outbreak of a deadly hospital-acquired infection, mucormycosis in 2008-09. In response to several outbreaks in recent years, the CDC launched new targeted initiatives to help hospitals and health departments share information with the public about hospital-acquired infections.This type of public health work, based on health services research findings, is critical to delivering high quality care, reducing medical errors and protecting patients. Continue reading →

A Weekly Advocacy Message from Research!America: Talk is cheap; bipartisanship is priceless

Dear Research Advocate:

The doubling of the National Institutes of Health budget between FY99 and FY03 is an example of Congress at its most productive … and it hinged on bipartisanship. A small group of Republicans and Democrats recognized the power of medical progress, and they worked together to increase the budget baseline for NIH by nearly $11.5 billion. Without that doubling, and with the stagnation of virtually all non-defense discretionary funding that followed on its heels, which groundbreaking medical discoveries would still lie dormant? Which of those we hold dear would not be alive today?

Research!America Chair and former Congressman John Porter, who chaired the House Labor-HHS Appropriations Subcommittee, was one of a relatively small group of champions on that bipartisan team. On Monday, March 31, the National Institutes of Health held a dedication ceremony for the John Edward Porter Neuroscience Research Center. NIH Director Dr. Francis Collins, Senators Tom Harkin and Mark Kirk, renowned researchers and NIH alumni Dr. Gerald Fischbach and Dr. Steven Hyman, and other distinguished leaders paid tribute to Congressman Porter, acknowledging his staunch commitment to bipartisanship and his extraordinary contribution to advancing medical research. As Congressman Porter emphasized during his remarks, the two are not unrelated. The severe partisan divide in Congress has served to perpetuate the stagnation of NIH resources, both by compromising the deliberative process that is meant to inform the prioritization of appropriated dollars and by stymying tax and entitlement reform. Scientists must fight back, buoyed by the high esteem in which they are held by the public and armed with unique insights into the societal benefits of investing in research. View photos of the dedication ceremony here and our statement here. Continue reading →

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.

 

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 →

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!

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.