Tag Archives: Ellie Dehoney

A Weekly Advocacy Message from Research!America: The innovation imperative: It’s about Max

Dear Research Advocate:

This week, the research advocacy community suffered a tremendous loss. John Rehm, husband of Diane Rehm, passed away Monday. Diane, the host of The Diane Rehm Show on NPR, was honored by Research!America last year for her advocacy with the Isadore Rosenfeld Award for Impact on Public Opinion. Her late husband was a friend and longtime supporter of the Parkinson’s disease community. Our thoughts are with the Rehm family during this difficult time.

As you pursue your advocacy efforts, we hope the newest fact sheet in our series about the human impact of research will prove useful. Max Hasenauer was diagnosed at 22-months-old with X-linked Agammaglobulinemia (XLA). He is alive today because of research that enables him to receive infusions of antibodies every three weeks. While this technique has been life-saving, more research is desperately needed to address the profound challenges Max continues to face. Thank you for helping to ensure that Congressional Offices are seeing these fact sheets. We continue to receive positive feedback from the Hill thanks to your efforts to share the fact sheets broadly. Continue reading →

A Weekly Advocacy Message from Research!America: 5 by June 5

Dear Research Advocate:

Today, June 5, is a milestone in our Ask Your Candidates! (AYC!) voter education initiative. Today is the culmination of 5 by June 5, a nationwide push to encourage voters to ask their candidates about the priority of medical progress and encourage five others to do the same. There is still time for you to join us! Click here to send a message to the candidates running for House and Senate in your district. You can customize the message to include your personal reasons for supporting medical research or you can just click send on the message we’ve provided. In this case, it doesn’t just take a village, it takes a nation. Please help us reach voters in every state and every congressional district. Should accelerating medical progress be a higher national priority? If our future leaders understand that their answer to that question is truly important to Americans, perhaps they will enter office as research champions.

Last week, we shared a fact sheet about John Hudson Dilgen, a child with a debilitating and potentially deadly disease called Epidermolysis Bullosa. Medical research is about John. It is also about Carrie, a woman living with a severe form of Multiple Sclerosis. We hope you will find this fact sheet about Carrie useful in your advocacy. When we sent John’s story to Congress, the response was truly overwhelming. Carrie’s story will no doubt have the same impact.

Two articles, one in the Washington Post on June 1, and one in today’s New York Times, offer profound examples of the power of medical research. The Post article discusses accelerated approval of a new medicine that can extend life for a subset of patients with lung cancer, and the Times article describes DNA testing that led to the rapid diagnosis and successful treatment of a little boy whose life hung in the balance. Both of these stories involve precision or personalized medicine, a hallmark of modern medical progress.  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 →

A Weekly Advocacy Message from Research!America: First things first

Dear Research Advocate:

Washington isn’t ignoring research; far from it. Legislation was recently signed into law that allows appropriators to reallocate federal funding from the Republican and Democratic conventions to children’s health research; proposals have been introduced that could ultimately provide supplemental federal funding streams for the National Institutes of Health (NIH), the Centers of Disease Control and Prevention (CDC), and several other health research programs; and some Members of Congress have once again launched an attack on the National Science Foundation, demonizing certain projects as a means of casting doubt on scientific freedom. Unless you’re playing Jeopardy!, answers do not precede questions. Science without freedom is not science. More on that in future letters.

Washington isn’t ignoring research, but the spotlight keeps missing the most pressing question: Will Congress do something now to accelerate medical progress, or will FY15 mark another year of neglect?

The NIH budget is lower today than it was in 2012. How have we fallen so far behind? Is it no longer important to conquer diseases that kill children, to do more for wounded warriors, to stop devastating conditions like Alzheimer’s and cancer? Continue reading →

Research Matters Communications Workshop for Early-Career Scientists: October 9, 2013

Research!America’s science communications event, “Research Matters Communications Workshop: Promoting Basic Research in a New Age of Communications: Challenges and Opportunities,” was held October 9 at the Marvin Center on the campus of the George Washington University in Washington, DC.

Leo Chalupa, PhDGWU’s vice president for research, Leo Chalupa, PhD (pictured at right), opened the day with remarks that implored the nearly 100 young scientists in attendance to think about their families when they communicate.

“Act like your Aunt Harriet is in the audience,” Chalupa said; his welcoming remarks indeed laid the groundwork for the workshop, as Aunt Harriet would be referenced frequently throughout the morning.

Research!America President and CEO Mary Woolley followed with an introduction of the plenary speaker; Woolley also hit on a theme that is especially relevant this week. She recalled the story of 2000 Nobel Prize winner Paul Greengard, PhD and his sister, Chris Chase. In an op-ed in The New York Times a few days after Greengard’s win, Chase lamented that she never fully understood the research her brother had undertaken. Upon winning, however, she read news accounts that explained his work as determining how brain cells communicate; this work could one day impact Parkinson’s disease and Alzheimer’s disease.

“I’m thrilled he won,” Chase wrote, and Woolley recounted. “Now I know what he does.”

That segued into the plenary session from Christie Nicholson, a lecturer at the Alan Alda Center for Communicating Science at Stony Brook University. Nicholson (pictured below) began the session by reminding the audience that effective communication isn’t just necessary when dealing with the public; because science has become so specialized, researchers sometimes can’t understand what their own colleagues are saying.

Christie Nicholson

Nicholson explained that it’s important to tell a story. But before you can begin to craft a story, she said it’s critical to not only understand the goal you’re trying to achieve, but also to understand your audience. And to do that, one must know what the audience knows, what the audience cares about and what motivates them. Continue reading →

A Weekly Advocacy Message from Mary Woolley: “Ordinary Americans” at risk

Dear Research Advocate:

Yesterday, I joined Diane Rehm and other guests on her nationally syndicated radio program to discuss how sequestration impacts “ordinary Americans.” I was struck by how deep and distressing the damage is, in so many sectors, including but not limited to our own. Yet somehow the pain is not acute enough to force action.

What strikes me is how low our collective expectations have sunk when it comes to reinvigorating U.S. economic growth and prosperity. Our nation can do better; why don’t we maintain high expectations and hold our elected officials accountable for setting the policy stage to accomplish them? Policy makers should protect discretionary spending, make hard tax and entitlement reform decisions, and commit to policies that foster economic growth and societal (including health) progress. Part of that equation is ample, stable federal funding for medical research and policies that spur private sector medical innovation.

A glimmer of hope for policies creating such an environment can be seen in the Senate agricultural appropriations bill, which provides the FDA an increase of $96 million above FY13 and full access to collected user fees, previously subject to sequestration. The House also provides a modest increase for FDA. But don’t jump for joy; these increases still leave FDA worse off than FY12 and grossly underfunded. That we think of this as an increase is another example of lowered expectations. Meanwhile, the Senate 302(b) allocation levels for FY14 appropriations were adopted today. As expected, the Labor/H budget is significantly higher than the House’s. The Senate and House numbers are so far apart that reconciliation seems unlikely; the odds are still on flat funding minus sequestration. This is a low-expectation, low-outcome scenario, to be sure, and we should all fight against it. If we don’t, “ordinary Americans” will continue to suffer. Continue reading →

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

Dear Research Advocate,

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

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

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

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

Sincerely,

Mary Woolley

A Weekly Advocacy Message from Mary Woolley: Merry Cliftmas?

Dear Research Advocate,

Are we heading over the fiscal cliff? You have probably seen the several public opinion polls saying most Americans now think it’s inevitable. (“Merry Cliftmas,” says Jon Stewart.) Our latest polling tracks with that of others — and adds a timely insight. Just when one might least expect Americans to voluntarily increase what they owe to Uncle Sam, more than 50% say they would be willing to pay $1 more per week if they were sure the dollars would go to medical research. See this finding and more in a new poll we commissioned to take the pulse of Americans at this high-stakes time in our history.

We have been asking about willingness to pay more in taxes for years now, but it is particularly relevant now while elected officials are talking about tax reform and so many people are rethinking the role of government. We hope that advocates will use our poll data, emphasizing that Americans believe research is a part of the solution to containing health care costs and a significant driver to our economy.

You’ve heard about the impact of the fiscal cliff (and possible solutions to it) on NIH and other agencies that support research, but what about the impact on private sector innovation? Our VP for policy and programs, Ellie Dehoney, points out that cuts to Medicare and Medicaid reimbursement rates could create a disincentive for venture capitalists to invest in new medicines. Read the full article in Genetic Engineering & Biotechnology News. New investment in biotech is already down significantly from last year, a trend that does not bode well for patients waiting for innovative treatments.

According to a new brief from the Center for American Progress: “Our national investments in research and development as a percentage of discretionary public spending have fallen from a 17% high at the height of the space race in 1962 to about 9% today, reflecting a shift in priorities of our government.” That’s disturbing, the authors assert, since research and innovation are powerful economic drivers. Public sector funding is slipping in a key area just when we need it most. For more on how innovation powers the economy, see a new report from the Information Technology and Innovation Foundation: The 2012 State New Economy Index. Wherever your state ranks, its future economic success depends on robust investment now in the knowledge economy.

United Health Foundation and its partners have released the 23rd annual America’s Health Rankings — a wonderful resource that tracks key state health indicators across the nation, providing fuel for targeted public health strategies. Investing in research that will open more doors to prevention of obesity is just one of the answers to the call to action issued by the report and its accompanying release.

To help our federal leaders understand how very much is at stake right now, we must all get involved in illustrating the impact slashing research funding will have on individuals, families, careers and business. The AAAS has launched an initiative enabling you to submit a comment and/or a video about current threats to R&D funding, information that will then be used for advocacy. Please take a moment to add your voice!

Sincerely,

Mary Woolley

A Weekly Advocacy Message from Mary Woolley: Time to ramp up media attention to what’s at stake

Dear Research Advocate,

As our nation edges toward the fiscal cliff, the White House and House Republican leadership have been trading offers. The most recent Republican plan includes additional cuts to discretionary spending — another $300 billion. These newly proposed discretionary cuts are significantly less than the across-the-board approach of sequestration, but suggest that — absent a strong shift in the winds — more discretionary spending cuts will be part of any final, compromise plan. It is highly unlikely that any final plan will be hammered out until next year; the president indicated as much in remarks he made Tuesday. The best guess is that policy makers will coalesce around a small package that is designed to hold back the tidal wave of fiscal problems until the new Congress is in place, at which point sequestration will again become a possibility. Regardless of what scenario plays out — and no scenario is anywhere near certain — we must keep up the pressure.

The recent increase in media requests for stories of families, patients and researchers who will be directly impacted by the fiscal cliff is a positive development and an opportunity to increase awareness. Can you help identify individuals who can tell compelling stories now, before decisions are made, and proactively pitch stories to national and local media? You can do this on your own via social media and also work with the communications office of your society, association or institution. And if you or your organization have examples tracing federally funded research to private sector development, write an op-ed or letter to the editor and shine a spotlight on them! I’ll say it again — this is the time to speak out.

Here are a couple of great examples of recent media attention: The St. Louis Post-Dispatch has published an op-ed by Dr. Larry Shapiro, Research!America Board member and dean of the Washington University School of Medicine in St. Louis. He writes about the need for a bipartisan solution to deficit-reduction, one that does not hurt our health and economy. In The Tennessean, Dr. Jeff Balser of the School of Medicine at Vanderbilt writes about the chilling effect sequestration would have on biomedical progress, while discouraging a generation from pursuing careers in research. Columbia University Medical Center convened a press conference with congressional Reps. Nadler, Rangel and Maloney to urge policy makers to reject cuts to the NIH budget. Consider organizing a local press event — as is frequently said, all politics is local, and the best arguments for saving research are local, too.

Ellie Dehoney, our VP for Policy & Programs, was recently quoted in a CNN article, “10 ways falling off the fiscal cliff could hurt your health,” describing the impact of sequestration on vital medical research programs. Forbes has run an op-ed highlighting how the fiscal cliff would harm our innovation economy. The research community’s message is resonating, and all of us need to make sure all policy makers are hearing it, over and over again. Send your elected representatives an email TODAY.

We can have influence even when it may seem unlikely, simply by speaking up and relentlessly making our case. Click here to access a toolkit of advocacy ideas. Several organizations are utilizing YouTube to make the case — see examples here: American Society of Hematology, American Chemical Society. And Stand With Science is a student advocacy organization looking for signatures for their letter opposing sequestration. On December 10, Research!America will participate in the NDD (non-defense discretionary) Coalition’s day of action. You can, too — find more info on how to participate here — if you tweet on the day of action, be sure to use the hashtag #NoMoreCuts!

Sincerely,

Mary Woolley

A Weekly Advocacy Message from Mary Woolley: New Poll – Likely Voters Say to Congress: Stay in Session, Avoid Taking Us Over the Fiscal Cliff

Dear Research Advocate,

To call attention to the unintended consequences of the sequester, we held a press briefing today in partnership with United for Medical Research. Two Members of Congress who are still in town, Reps. Ed Markey (D-MA) and Brian Bilbray (R-CA), spoke about the high priority the nation must place on NIH and about the usefulness of data from a new national public opinion poll showing that 51% of Americans say that across-the-board cuts are not the right way to reduce the deficit. To see more poll results for use in your advocacy, click here. Other speakers this morning spoke about what’s at stake for everyone who cares about the research enterprise: patient hopes for cures delayed; industries unable to create new jobs and drive innovation in frustration about U.S. policies and lack of predictability; young scientists becoming discouraged and accepting offers to work in other countries – countries that have made research a clear priority. All of this further burdens our national deficit – we need research to combat the rising cost of health care by delaying the onset of Alzheimer’s and a host of other diseases. As Rep. Markey said, it will take high energy and coordination to get our message of research as a priority heard during the lame-duck session. You will be hearing more from us about how to assure that happens, but in the meantime, don’t forget that there is an important election going on (see below).

First a quick recap of what sequestration means, according to a new OMB report. Most agencies would be hit with an 8.2% cut – NIH alone would lose $2.5 billion in 2013! It is still unclear what level of discretion agency heads would have in carrying out these cuts. Losses at the CDC would be $464 million, the FDA would lose $318 million, and the NSF would be cut by $577 million. See our new one-pager with the latest data.

There is an additional dimension to the FDA cut that should be of significant concern to all advocates for medical progress. Part of the cut diverts industry-supplied user fees into deficit reduction. Those fees are paid by industry for the express purpose of ensuring FDA has the resources to review new medicines and medical devices on a timely basis. The precedent of playing bait and switch with user fees is a dangerous one, particularly since these fees are voluntary. Why should the drug and device industries agree to pay user fees in the future knowing that still more time will be lost in approvals – and patients will be forced to wait longer for new treatments and cures. We must work together to address it.

We all need to do our part to make sure the media is covering all the aspects of the threat of sequestration, making it more evident to all Americans just what is at stake. We’ve already seen National Journal release an article about our new polling data. The Atlantic released a story about how sequester would impact science budgets, citing another recent article from ScienceInsider. The Scientist also reported on the story, quoting Ellie Dehoney, our VP for policy and programs. This week, the Rochester (MN) Post-Bulletin reported how the cuts at NIH could impact the Mayo Clinic, a Research!America member. For those of you that may have contacts with local or national media, now is the time to let them know about the impact where you live.

We are only a month and half away from the election. We know from many of our members and partners that they are calling/writing/emailing campaigns to urge participation in the Your Candidates –Your Health voter education initiative. Please join the momentum and help drive the campaign … we don’t have much time left to make it clear to candidates that it isn’t only lobbyists and professional advocates (people like us at Research!America) who care about research and want them to talk about it. Every candidate should be hearing from hundreds of concerned stakeholders. Make sure you are in that number!

Demonstrations of the value of NIH and NSF research will soon be honored by Research!America member FASEB. Submit events, exhibits or web-based outreach that highlight the value that research agencies deliver and compete for a cash prize! For details, click here.

Sincerely,

Mary Woolley