Showing posts with label NIH. Show all posts
Showing posts with label NIH. Show all posts

Monday, July 25, 2011

Complacency is Not an Option

Earlier today I saw a tweet from one of our New Voices, @JLVernonPhD:
"If you haven't called your Congressional Representative and Senators about the debt ceiling, you are as much at fault as they are."
He couldn't be more right, which is why I'm sharing a modified version of a letter that Research!America's President & CEO Mary Woolley sent to the Research!America membership last week.

Decisions will be made soon. That is why it is critical to speak up now. You know and I know that researchers, research-based institutions, patients and their families and our nation’s economic future will all be worse off if Congress chokes off funding for health research.
  • We can’t afford to lag other nations when it comes to R&D. Without research-fueled innovation, our economy will continue to sputter.
  • We can’t afford to stall progress against life-threatening and disabling diseases, biding our time as chronic conditions like Alzheimer’s, Parkinson’s, autoimmune disorders, depression, PTSD and other health threats take a rapidly increasing human and fiscal toll.
  • We can’t afford to dismantle the basic research infrastructure at universities, academic medical centers and independent research institutions across the country, hamstringing the U.S. R&D pipeline.

You and I know that whether the goal is to wage battle against diseases like Alzheimers or to ensure our nation remains competitive in the global economy, it is counterproductive and counterintuitive to divest from medical research. Now we must get that message across to Congress. Research!America is committed to providing advocacy tools to help you do just that.

Today's Tool: A script for when you call Congress.

Phone calls are an effective way to connect with your representatives and can have greater impact than emails or other forms of electronic communication. The script below is just a template. Providing in-district or state examples of the impact of NIH funding will strengthen your argument and demonstrate just how important this issue is to you. It can also be tailored for use in advocating for other key health agencies. Drop us a line in the comments if you would like assistance in tailoring this script.
  • Hello, my name is __________ and I’m calling from ________ in your district.
  • I am calling because I’m very concerned about the current debate over federal spending for programs that are important to me and all Americans.
  • The National Institutes of Health (NIH) play an essential role in discovering life saving cures and treatments while enhancing our nation’s economic competitiveness.
  • Unfortunately, these difficult fiscal times have resulted in over $300 million in cuts to the NIH budget, and obtaining funding for medical research is harder than it has ever been.
  • As your constituent, I urge you to support legislation that provides robust NIH funding and I urge you to convey this message to your colleagues in Congress.
  • NIH research is crucial to improving the health of all Americans and creates the high quality jobs that our nation needs today.
  • Thank you for speaking with me and I look forward to hearing more from your office on this key issue

If we keep fighting together, we will make a difference.


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Wednesday, July 20, 2011

Tell Congress: No More NIH Budget Cuts

Photo credit: Heather Benson
The recent budget deal for fiscal year 2011 reduced the National Institutes of Health (NIH) budget by over $300M. The NIH director has reported that grant funding rates are at an all time low.

On July 26, the House of Representatives is scheduled to make their funding recommendation for NIH. Let them know that NIH is critical to our nation’s health, competitiveness, and economic vitality. Our nation needs robust support for health research now more than ever.

In addition to sending a message to your members of Congress, pass this alert on to others who will speak out in support of health research. 'Like' this alert on Facebook and share it with your networks.

Our federal budget will continue to be a critical issue and we need every willing voice to send our message loud and clear to our elected officials in Washington. Act now to support research.

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Monday, July 18, 2011

Working Together on HIV/AIDS: Scientists

Photo courtesy of the NIH

This year marks the 30th anniversary of two mysterious outbreaks in America. One was of a form of pneumonia called Pneumocystis carinii pneumonia (PCP) and the second was a skin cancer called Kaposi’s sarcoma. Both diseases were quite rare, especially considering the patients were all young men in their 20's. These outbreaks actually marked the beginning of our awareness of a new disease we now know as AIDS.

Today’s post is the first in a series about HIV/AIDS, including where we were and how far we’ve come in treating this devastating disease. However, I’m not planning on focusing on the science behind HIV/AIDS since others have already done a great job of explaining this.

Instead, I want to talk about the different groups that were involved in the amazing progress we’ve made in our understanding and treatments. In just 30 years, HIV/AIDS has gone from a death sentence to a manageable chronic disease. Who made that possible?

The first answer that probably comes to mind is scientists and physicians who had to figure out what caused the symptoms they were seeing in clinics and how the disease was spreading. This was a daunting challenge, but with the support of the US government as well as governments around the world, they identified the Human Immunodeficiency Virus and figured out how it was transmitted.

Almost two decades before the emergence of HIV/AIDS, scientists had the idea that cancers might be caused by a special type of virus called a retrovirus. They developed a drug against retroviruses in the hopes that is would cure these cancers. Unfortunately it didn’t work. But, HIV is a retrovirus, so they were able to revisit their old drug. The drug, AZT, appeared to slow the progression from HIV infection to AIDS and represented the first major breakthrough for infected individuals. Not bad for a failed experiment!

Since then, science has produced several other drugs to treat HIV/AIDS and many people are living long and symptom-free lives as a result. But scientists didn’t work alone. In my next post in this series, I’ll discuss the crucial role advocacy groups played in fighting this epidemic.

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Monday, July 11, 2011

The Debt Ceiling Deal and Health Research


Time is running out to cut a deal. On August 2nd, the US debt ceiling will be reached and meanwhile, talks between the White House and Congressional leaders have stalled.

If Republicans and Democrats can come to an agreement it may be a short term increase in the debt limit to provide additional time for negotiations. However, President Obama has indicated that he has little interest in short-term measures and prefers to craft a far-reaching compromise that could fundamentally alter the fiscal state of the federal government.

If a major deal can be struck, it will likely contain spending cuts and possibly caps for government programs. On the mandatory side, these cuts could mean reduced benefits for Medicaid, Medicare, and Social Security beneficiaries. The cuts could be dramatic as these programs are considered to be the primary driver of federal spending and have seen unprecedented growth in recent years.

On the discretionary side, caps would limit the amount by which agency budgets are able to grow. The NIH budget, for example, is currently at about the $31B level for this fiscal year. A long-term cap on discretionary spending could place restrictions on spending by budget function, which is a high-level aggregate of spending. The NIH and health research fall into the function 550 category, which is broadly labeled ‘health.’

Caps or cuts to the health budget function could place major constraints on the nation’s ability to carry out health research. In the short term, appropriations hearings are underway in the House and these decisions may impact the makeup of a broader compromise over the debt ceiling and federal spending.

Health research is an engine for innovation critical to the future of our economy, and a source of treatments and cures critical to the health of our population. Act now so your representatives know that cuts to research should not be part of any deal now or in the future.


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Friday, June 24, 2011

Five at Five

Five quick quips as we round-up the week here at New Voices...

Cancer and cancer research are always hot button issues and this week was no exception with lots of ink covering cancer from patient advice (cancer is like improv?) to new graphic warnings for cigarettes to how a sitting at work can lead to specific types of cancer.

Ed Yong (again) shows us how research can be made accessible to the public with his piece on herding HIV to an evolutionary dead end.

Here at New Voices we talk about the NIH a lot, but were surprised to learn today's 27 institutes started as a one-man shop in 1887.

Good news for those who don't have time to call Congress during the day: 33 members of Congress sleep in their offices. I wonder if any of them are using hammocks to help them sleep more deeply?

On this day in New Voices
2010 - We got an inside look at the Barresi Lab at Smith College.
2009 - We talked about Engaging Audiences.


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Thursday, June 23, 2011

An Issue Close to my Heart


The heart is an amazing organ. I work on heart development which makes me a little biased, but let me tell you why I think so. Every cell in your body requires oxygen and the way oxygen gets around is in blood. The heart is required for pumping blood that has been loaded up with oxygen to the tiniest capillaries in your brain and the very tips of your fingers and toes. Once the blood has given up its oxygen, it has to be pumped back from the furthest reaches of your body to your lungs to reload. The heart does all of that pumping. But wait- there’s more.

The heart is one of the first organs to form during embryonic development. It starts out as a simple tube but quickly folds up and pinches off into hollow chambers. Think of those balloon animals you got at birthday parties as a kid, that’s what your heart has to do only it has to work while it’s doing it! This is something like driving a car while building its engine at the same time.

Needless to say, heart development is very complicated and a lot of things can and do go wrong. In fact, congenital heart defects are one of the most common birth defects in America and the leading cause of birth defect-related death. Heart defects are present in 50 out of every 1000 live births. Apart from the emotional difficulties of dealing with these illnesses, they also come with a high economic cost. The lifetime costs associated with heart defects for all of the babies born in a year exceeds $1 billion.

While physicians have made a lot of progress in diagnosing and repairing these defects, little is known about what causes them. This is where basic science comes in. Scientists are hard at work trying to understand how the heart forms and what genes are involved in the process. We have to first understand normal development if we want to figure out what is going wrong when defects occur.

If scientists can identify the key genetic players at work in heart development, it could lead to improved screening and treatments. In order to shed light on congenital heart disease they need a lot of support which is just one more reason why we need to make sure the NIH has the funding it needs. The tiniest Americans are depending on it.

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Thursday, June 16, 2011

More with Marcy Maguire, NIH fellow

Yesterday, we shared the first half of our interview with Marcy Maguire, MD. Marcy is a fellow at NIH doing research on reproductive health.

NV: What are the potential applications of your research or treatments that could result?

Marcy: The applications for the first project are pretty theoretical at this point, and its purpose is to add to our basic understanding of reproduction. For the second project, its applications are also unknown, but the results are probably more understandable and interesting to the non-scientist. A woman’s fertility declines with increasing age, and by 40 it can be difficult to conceive spontaneously. Most women undergo menopause around age 51. Given the increasing tendency to delay childbearing in our modern society and the ongoing controversies surrounding hormone replacement therapy after menopause, the cellular processes associated with age-related decline in fertility and the onset of menopause are both interesting and socially relevant.

NV: You've explained how your work contributes to infertility treatment and care. Can you talk a little about your impact on your community? In other words, how does your NIH fellowship allow you to make a contribution to your local economy and the health of others?

Marcy: I’m the mother of a 3 year old daughter, who goes to daycare. I rent a house in Bethesda, and contribute to my local economy in pretty normal ways-grocery shopping, restaurants, etc…I think my contribution to the health of others is probably a more unique and interesting story.

Although my last year at NIH has been research-focused, I still see patients. What is great about my clinical experience is that I see patients who are afflicted with very rare disorders. By coming to the NIH, these patients are given the opportunity to be cared for by physicians with expertise in the particular disease that afflicts them. The patients in turn contribute to science by allowing researchers here to study their health in the context of their disorder.

Also, because we are government funded, we are heavily connected to the military system, especially Walter Reed and the National Naval Medical Center. We are able to treat men and women in the military who are experiencing infertility or who require specialist reproductive endocrine care. The great indirect benefit to all of this is that our interactions with patients often spur individual research projects. Every patient is unique and there is something to be learned from every person we meet.

NV: Do you have any memorable experiences from your time working with patients?

Marcy: I’m lucky in that I can watch the gradual results of a woman’s infertility treatment take shape-in the form of a child! There is one couple that I treated early on in my fellowship who now has a child. I’ve run into them a few times outside of the hospital. It makes me so happy when I see them as a family, and to know that I contributed to that is a pretty gratifying feeling.

NV: What advice would you give to someone interested in becoming a researcher or an advocate for research?

Marcy: My advice would really be to just dive in, find a hospital or lab in your area, and expose yourself to multiple fields to see what triggers your interest. There are so many fields of medicine to specialize in, and the earlier you can become exposed the better.

My other advice would be to get started as early as possible. There is an unbelievable amount of information out there, so the more time you give yourself to build your knowledge base, the better.


Special thanks to Marcy for sharing her research with us. We look forward to seeing the results of her projects.

If you're interested in sharing your research story on New Voices, email us at programs_at_researchamerica.org.

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Wednesday, June 15, 2011

Interview with Marcy Maguire, NIH fellow

Today we're sharing the first half of our interview with NIH fellow Marcy Maguire, MD

NV: When did your interest in science and medicine begin?

Marcy: I have always been interested in science, probably because my dad, who is also a physician researcher encouraged curiosity and analytic thought when I was younger. I wasn’t sure I wanted to become a doctor until I took a course on human genetics, reproduction, and public policy in the molecular biology department at Princeton University. This course covered many interesting topics, including in vitro fertilization, pre-implantation genetic diagnosis i.e. PGD, (the process whereby disease-free embryos are pre-selected to be implanted), and even cloning. I thought the science of reproduction and the early stages of embryo growth and development were fascinating.

After Princeton, I studied medicine at the Medical College of Virginia for medical and then completed a residency in obstetrics and gynecology at Tufts Medical Center. Presently, I am completing the final month of my reproductive endocrinology and infertility fellowship at the NIH. The first 1.5 years of my fellowship were largely clinical and patient-based while my final 1.5 years have been basic-science-oriented.

NV: When did you begin to specialize in OBGYN? What about infertility inspired you to focus your time and energy in this field?

Marcy: In med school you don’t really specialize in anything, kind of like law school. You go and learn a lot and graduate but you don't really specialize in a particular medical field. During residency you learn how to care for patients within a particular medical field, like obstetrics and gynecology. If you want to focus in-depth on an even more particular subset of patients, you complete fellowship training in a subspecialty within your field- for me reproductive endocrinology and infertility within the field of ob/gyn.

What really locked me into infertility was my interest in reproduction and genetics. For instance, a couple might come in, both of whom are carriers for Huntington’s or Tay-Sachs disease, and who didn’t want to pass the disease onto their children. The idea that you could select embryos without mutated/affected genes and thereby enhance the chance that such a couple would have a healthy baby is a very powerful thing. Now that I have spent a few years doing research in reproduction, I have come to realize that not only is this a fascinating field, but it is also incredibly conducive to research. There are a million fascinating questions that remain to be answered.

NV: Now that you are doing research in your 3rd year, what are you researching? What questions are you seeking to answer?

Marcy: I’m doing two projects. The first involves reproductive hormone receptor signaling in mouse ovarian cells. Reproductive hormone receptors play a major role in ovulation, menstruation, and many, many other cellular processes. A better understanding of how these receptors work could help us to better understand and possibly treat infertility, endocrine disorders, and even some types of cancer.

My second project deals with ovarian aging. I am comparing steroidogenic enzymes and regulatory molecules in ovaries from old and young mice.


Check in tomorrow when Marcy shares more about her work, it's applications and advice for early-career researchers.

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Thursday, June 2, 2011

Snapshot: Migraines

Comic credit: Linda Causey
I started getting migraines when I was 16, a genetic gift from my mom. (Thanks, mom!) I participated in clinical trials throughout high school, after which they began to recede slightly. In college I began noticing that alcohol was a trigger, so I stopped drinking.

After college the migraines began ramping up, but as they did two fortunate things happened: I met a great neurologist and I started recognizing the various triggers. Over four years we have developed a strategy for both preventing and treating my migraines. I now take daily preventatives, and carry a stash of medication with me at all times.

Migraines are often misunderstood as merely headaches, but worse. Migraines are a completely different animal, characterized by debilitating neurological symptoms like aura, nausea and intense throbbing. Add to this the incredible diversity of symptoms and reactions to medications that migraine sufferers experience, and a migraine is not just a minor inconvenience; it can be completely debilitating.

While a headache can often go away with an over-the-counter treatment, like ibuprofen, one of my migraines would laugh hysterically were you to offer an ibuprofen to treat them.

Migraines affect as much as 10% of the population, including children. According to the Migraine Research Foundation, migraines contribute to 113 million missed days from work each year. Therefore not only are they a serious impediment for individuals, but their incidence constitutes a wider public health problem.

There are many treatment and prevention options available, but they often require a substantial investment in time - think years, not days - to determine what works, and a dedicated neurologist who can help a patient track their treatment. Despite years of treatment, my migraines have reduced in intensity and frequency, but not been eliminated.

As difficult as my experience with migraines has been, it actually falls on the luckier side of the spectrum. The reality for many migraine sufferers is mixed: a successful regimen of medication will often only work temporarily or sporadically.

My mom got her first migraine while pregnant with me. During my childhood, I can remember being woken up in the middle of the night to her crying; sometimes my dad would take her to the hospital just to receive pain medication strong enough to put her to sleep. She would give herself shots in the leg and sit in complete darkness for five days at a time.

If sporadic migraines weren’t bad enough, around 4% of the US population has daily migraines. A family friend has had a migraine for three years, almost uninterrupted. He has lost his job and basically remains in seclusion.

So what can be done? Clearly, more research is required to understand migraines, especially the factors that determine susceptibility and treatment success. Some of the current research examines genetic factors, changes in brain circuits, the role of estrogen, and the prevalence of “rebound headaches”.*

For the sake of all Americans who suffer from migraines, more research and better options are vital. Migraine research represents another critical part of the NIH portfolio. For patients, research could answer questions about why drugs work well for some but not others, thus cutting down the trial and error time. But most of all, it would spell relief for the millions who spend so much of their life in debilitating pain.


*Rebound headaches are a perfect example of the uncertainty and constant balancing act that migraine management requires. Some medications will take away your migraine for that moment, but will increase the odds of a rebound headache occurring at a similar time the following day, thus giving you a rebound headache.

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Monday, May 16, 2011

Freshmen Start the Day with NIH 101


On Wednesday, I attended a breakfast meeting sponsored by Congressman Dan Benishek, MD of Michigan. This meeting provided an opportunity for several freshman Members of Congress to meet Dr. Francis Collins, the director of the National Institutes of Health.

We were thrilled to be joined by Congressman Austin Scott of Georgia, Congressman Mike Kelly of Pennsylvania, Congressman Larry Buchson, MD of Indiana and Congressman John Carney from Delaware.

Congressman Benishek opened the meeting by introducing Dr. Collins and thanking those in attendance. After providing a brief overview of the NIH, the members were given an opportunity to ask questions about health and biomedical research.

The Q&A discussion touched on a variety of issues and challenges facing health and health research. The importance of prevention was discussed as a cost-effective means for improving health while lowering overall health spending. Dr. Collins also mentioned the importance of personalized medicine and new technology to foster healthy behaviors in patients. But he also informed members about the challenges facing the NIH. Dr. Collins estimates that grant award rates at NIH could dip as low as 17% due to funding constraints, which would be the lowest in history.

Overall, the freshmen members in attendance seemed supportive of research to improve health and interested in health research issues. They all received personal invitations to take a tour of the NIH. Have your representatives visited the NIH campus yet?


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Friday, May 13, 2011

Not-at-All-Scary Friday the 13th Round-Up

It was a scary start to the day with Blogger down, but we're back in business and this Friday the 13th isn't too scary at all. In fact, since you didn't get a post yesterday, today's round-up has a few bonus links and a new summer feature to keep you reading until we're back on Monday.

Making the Case for Investment in Research
For those who wonder why it's important to spend NIH money on global health, here's one great reason: a dramatic decrease in infant mortality. For about $208 per life, 97 families are celebrating a new member of their family. Since that doesn't include the value beyond the control of this study, in the end, it will probably cost even less per life saved. Knowledge is power, lasts a lifetime, and can make more lives possible.

Senator Shelby of Alabama is pushing to save NIH from cuts in FY2012.

Advocacy Around the Web
Research shows that people portray their personalities on social networking sites more honestly than anecdotal evidence has us believe. All the more reason to get out there and tell our science stories and defend research while being ourselves.

We're all excited for summer, but remember that with sunny days come summer sunburns. This well-done PSA - Dear 16 year old me - regarding melanoma should be shared with every teenager you know.

The Vatican has spoken out on climate change and made some strong statements about how we should take action now.

News of the Fun
As you might have guessed, kissing is a mood booster.  

Voting is open until the end of the day today on Doodle for Google, a program to encourage young Americans to put in pictures their life's ambition.You can vote once per age group, and there are many fun doodles to choose from. Also, for a country that's falling behind in math and science, it's interesting just how many of the finalists have science themes.

New Features
As New Voices begins its third summer, we now have enough content to feature historical posts from New Voices. The new segment will appear in round-ups, and if you like it and want it to be an even more regular feature, let us know. Without further ado....

On this day in  New Voices:
2010 - Sarah wrote about Failures in U.S. Chemical Regulation
2009 - FlyGal wrote about U.S. Competitiveness and Innovation


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Thursday, April 28, 2011

A second stop at the NIH


I’ve already written about how one of my most exciting moments at Research!America was visiting the National Institutes of Health (NIH) campus for the first time. And in my second visit earlier this week, the excitement hadn’t worn off. It’s likely because, this time, I and a few other Research!America staff got to see first-hand many of the things at the heart of the NIH: its history of discovery, its state-of-the-art clinical research hospital, and its talented researchers.

The day started with a walk led by our tour guide, Tara Mowery, who told us about the NIH’s origins as a “hygienic laboratory” located on Staten Island back in the late 1800s. Eventually the National Institute (no “s”) of Health moved to DC and found a home in nearby Bethesda. One of many sights on our tour was building 1 – current location of Director Francis Collins’ office, and the first of nearly 70 buildings on the NIH campus. Soon after, we entered building 10, the NIH’s hospital (pictured above), where we saw how researchers are literally taking their work from bench (a few hundred yards over) to bedside. John Burklow, director of the Office of Communications, followed up our tour with a presentation on the NIH’s organizational structure. There are 27 institutes and centers, but as Burklow emphasized, they’re all part of one NIH that is putting out news-worthy findings each and every day. Part of Burklow’s job, he added, is to ensure that the public understands the NIH’s expansive reach, especially with 85% of NIH research being done externally, at universities and other institutions across the country and around the world.

We then visited Dr. Marcus Chen, a staff clinician for the National Heart, Lung, and Blood Institute (NHLBI). Dr. Chen’s work is the kind of news-worthy research that Burklow had just described, as the Laboratory of Cardiac Energetics is studying methods for decreased radiation in computerized tomography (CT) scans of the heart. There have been quite a few major news stories recently about growing public concern over radiation and the increased use of high-radiation diagnostic tests, especially among children. By modifying certain parameters and using computer algorithms to improve imagery, Chen and his fellow researchers have been able to dramatically reduce radiation exposure. Pending further tests and development, this research could become the basis for safer, more patient-friendly CT scanning techniques at a hospital near you.

To wrap up our tour, Dr. Chen agreed to show us one of the CT scanners being used by his staff. It took a while, however, because machine after machine was being used for a patient. Eventually, we did get to see a scanner up close, but the wait was an excellent reminder of the NIH’s value. The clinical work done at its hospital not only serves and likely benefits patients today, but with continued discovery and development, the NIH also benefits the patients of tomorrow.

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Wednesday, April 27, 2011

Urge Your Members of Congress to Participate in Your Congress-Your Health


Research!America and our partners have launched Your Congress-Your Health. Every Member of Congress has been invited to respond to a questionnaire about medical research, the deficit, and support for federal agencies that conduct research to improve health (NIH, FDA, CDC, NSF, and AHRQ). Please contact your Representative and Senators TODAY to urge them to respond to the questionnaire.

Cuts to research funding have already occurred at NIH, NSF, CDC, and AHRQ. That is why it is more important than ever for Americans know where lawmakers stand on these critical issues.

Take action now!

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Friday, April 15, 2011

Lovely Weather, Rainy Day Reading

Comic credit: PhD Comics
The weather has been lovely this week in Washington, DC. As usual, as soon as we don't need to be at our desks (read: Saturday), the forecast turns gloomy. But, it means we'll have plenty of time to read up on stuff we missed this week. Here are five things we haven't missed (and don't think you should either):
  1. Last week's budget deal made its way through Congress this week, and now awaits President Obama's signature. Read these Science stories for more on how the deal affects research funding overall, as well as the NIH and NSF in particular.
  2. The royal wedding is just two weeks away, and Cell has an amusing, scientific perspective on the union of Prince William and Kate Middleton. (If you don't have a subscription, there's a summary here.)
  3. Looking for a job in public service? This book tells you how you can get paid to change the world.
  4. You've heard of the dot.com bubble and the housing bubble, but is there a higher education bubble? If so, is it about to burst?
  5. Ed Yong explains how breast cells may be able to revert to stem cells. What would that mean for the future of stem cell research?
Finally, if you like Earth Day activities, get a head start this year and submit a photo or video to the Consumer Electronics Association's contest to show what you'll be celebrating. Submissions are due April 17th, so be sure to get yours in soon!

Happy reading and we'll see you next week!

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Wednesday, April 6, 2011

Meet Ruth Timme, GenBank Biologist

Ruth is a long-time New Voice and was kind enough to tell us about her work in a phone interview.

New Voices (NV): What do you do in your work?

Ruth: I work through a contractor for GenBank (National Center for Biotechnology Information, NCBI), a large DNA sequence database that stores and organizes data from scientists around the world. When scientists sequence a genome, they have to deposit it in a public database, so NCBI curates the data and helps in the submission process.

NV: Why is your work important, in particular to the public?

Ruth: It’s a completely “public” job; NCBI is funded by the NIH, so it’s taxpayer dollars. When the government pays to have research performed, GenBank allows the data that comes out of it to be publically available. GenBank is analogous to the Library of Congress or the Smithsonian, except DNA sequence information is entirely digital.

NV: What might the public misunderstand or misinterpret about your work?

Ruth: If anything, they don’t even know this service exists. They might imagine a computer taking in all these data, but there’s actually a team of highly trained people who go through the data with a fine-tooth comb and verify it.

NV: Are there any policy issues affecting your work?

Ruth: We’re watching the budget pretty closely because the NIH is always brought up in the discussion. It’s really important that [the government] continue to fund both research and the efforts to make it public. You can’t publically fund research and then not publish what comes out of it.

NV: How did you become interested in policy and in working with Research!America as a New Voice?

Ruth: I’ve always been a politics wonk and I follow Congress, so I naturally became interested in the policy that affects science. I like to keep my toes in the water.

NV: What would your advice be for the scientists not interested or involved in policy?

Ruth:
It’s really important to be interested and involved, but it does take a lot of work. Many scientists aren’t rewarded by their academic departments for their work in policy, and they have to do it on their own time. We need to change the system; it’s a tough problem.

This is part of the ongoing Profiling New Voices series.

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Wednesday, March 30, 2011

Do You Know Your Members of Congress?

Either way, today is the day to get in touch with your member in the House of Representatives.

The House is currently crafting a spending bill that may include unprecedented funding cuts to NIH, NSF, CDC, AHRQ and FDA. These cuts represent a major threat to the nation’s health, job growth and competitiveness.

It is critical that you contact your representatives TODAY so they know that cuts to American research are unacceptable.

It's about your job. Your health and the future well-being of your family. It takes 30 seconds to send a message and another 30 seconds to share with your contacts via email or Facebook.

Your minute could be the constituent voice that convinces Congress to protect research.

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Thursday, March 3, 2011

Come to the 2011 National Health Research Forum

The Research!America annual National Health Research Forum is an amazing opportunity to hear leaders of the health research community talk about the issues of today and tomorrow. Below is the full invitation and I definitely recommend anyone who can attending. (Bonus: you can meet some of your fellow New Voices in person!)

Tuesday, March 15, 2011
11:45 a.m. to 3:00 p.m.


Join Research!America for the 2011 National Health Research Forum on March 15! This annual event brings together heads of federal agencies for health and science research, as well as leaders from industry, academia and patient advocacy.

Lunch will be served at 11:45 a.m. and Research!America's chair, The Honorable John Edward Porter, will provide welcoming remarks beginning at 12:10 p.m. Michael Riley, managing editor of Bloomberg Government, and Clive Crook, senior editor of The Atlantic, will serve as moderators for two back-to-back panels with audience Q&A.

Confirmed panelists include:
  • John J. Castellani, president and CEO, PhRMA
  • The Hon. Mike Castle, member of U.S. Congress (1993-2011)
  • Carolyn M. Clancy, MD, director, Agency for Healthcare Research and Quality
  • Francis S. Collins, MD, PhD, director, National Institutes of Health
  • Victor Dzau, MD, chancellor of health affairs, Duke University
  • Thomas R. Frieden, MD, MPH, director, Centers for Disease Control and Prevention
  • Margaret A. Hamburg, MD, commissioner, Food and Drug Administration
  • Harry Johns, MBA, president & CEO, Alzheimer\'s Association
  • David C. Page, MD, director, Whitehead Institute for Biomedical Research
  • Ellen V. Sigal, PhD, founder and president, Friends of Cancer Research
  • Elias Zerhouni, MD, president, global research and development, sanofi-aventis

Learn more about the National Health Research Forum, and register online today. Admission for Research!America members is complementary.

Research!America thanks our sponsors: sanofi-aventis; Pfizer, Inc; PhRMA; Howard Hughes Medical Institute; Battelle; Infocast; Zogby International; and Health Affairs.


For information other than sponsorship opportunities, contact Michelle Hernandez at mhernandez at researchamerica.org.

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Thursday, February 24, 2011

Welcome to Budget 101

Image courtesy of Rep. Huizenga
Capitol Hill is buzzing over the budget these days. But for those of us not fully in tune with the budget process, all of the talk might sound like little more than, well, a buzz in our ears.

We can’t, however, brush it off: budgets for the NIH, FDA, CDC, and other important agencies are in danger of being cut. This is a time for science and research advocates to both understand and get involved in the federal budgeting process. So, consider yourself automatically enrolled in Budget 101, your introduction to the federal budget.

First, it’s important to realize that in Congress right now there are two concurrent arguments about two separate budgets:

Fiscal Year 2012
Affecting: Oct. 1, 2011 – Sept. 30, 2012
What’s going on? On Feb. 14, President Obama submitted his 2012 budget proposal to Congress. The budget will now proceed through Congressional committees and so forth (see below).

Fiscal Year 2011
Affecting: Now – Sept. 30, 2011
What’s going on? The 2011 budget was meant to have been completed and signed months ago, but a lack of movement in Congress has left the government functioning under a continuing resolution (CR). The CR stipulates that, for the time being, all areas of the federal government receive funding at the same level as the previous (2010) fiscal year. The CR, however, expires on March 4, at which time the federal government will shut down if no budget is ready. Currently, the Republican-controlled House has passed its own version of the FY2011 budget, but the Democrat-controlled Senate will likely block that budget, forcing a compromise.

As you can see, there’s been a holdup in the FY 2011 budget-making process. Here’s how the process is supposed to run, with a focus on how funding for agencies like the NIH goes through:

Step 1:
About one year before the president’s budget proposal, individual agencies (like the NIH, FDA, etc.) begin planning for the latest budget. They work with the White House’s Office of Management and Budget (OMB) to come up with a budget strategy that also address the president’s priorities – fields and issues in which he’d like to see greater investment.

Step 2:
About six months before the president’s budget proposal, agencies have submitted their budget proposals and are negotiating with the OMB. By January, budget proposals should be finalized and compiled.

Step 3:
The president submits his budget proposal to Congress in February.

Step 4:
House and Senate budget committees discuss their own overall goals for spending and government revenue, which are then voted on. In cases of disagreement between the houses, a conference committee is set up. This step should take place February through May.

Step 5:
House and Senate appropriations committees take a closer look at the individual agency budgets and write bills that are then voted on by the individual house. Again, when there is disagreement between the Senate and House, a conference committee settles the difference. This step should take place June through September.

Step 6:
Appropriations bills are sent to the president - hopefully before Oct. 1, the start of the fiscal year. That, however, did not happen in time for FY2011, so a continuing resolution was passed instead. Continuing resolutions are not uncommon, but it is rare for a resolution to expire and lead to a government shutdown.

Step 7:
Agencies receive their funding.

If you’d like to learn more, check out The Washington Post’s interactive feature on the budgeting process, or this AAAS presentation on the budget process and R&D investment. Also, be on the lookout over the coming weeks as Research!America’s own website is updated with information about the federal budget.


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Friday, February 18, 2011

First Stop: NIH

Image courtesy of USAID
When I arrived in DC a couple of weeks ago, I was excited to see many famous places for the first time: the White House, Washington Monument, Lincoln Memorial and others. Which major attraction did I see first? The NIH campus.

Alright, it might not be every tourist’s top choice, but the NIH campus in Bethesda, MD is a place I’ve heard and read about for years. So when Heather asked me to attend a lecture there by Dr. Rajiv Shah, the current USAID (US Agency for International Development) administrator, I was more than happy to visit.

It turned out, however, that I wasn’t the only one having my “first time” on the NIH campus. NIH Director Dr. Francis Collins introduced Shah and noted that this was the first time a sitting USAID administrator had addressed the NIH. It was a bit a surprising: two closely related – and physically close – government agencies never having that kind of interaction.

As Shah soon described, the bond between USAID and the NIH certainly has plenty of room to grow. He first brought up a few cases in which the NIH has already contributed to USAID work: An NIH-funded study called First Breath has led to the development of a program against newborn asphyxia. An NIH study that discovered circumcision can reduce HIV transmission has brought on a circumcision campaign in Swaziland. And NIH studies on antiretrovirals and gel microbicides have USAID looking further into those HIV prevention strategies.

There remain plenty of areas, however, where the NIH’s potential for discovery and development can yield great benefits for USAID. In the fight against malaria, for example, Shah said, “we must invent new solutions:” faster methods of diagnosis, safer insecticides, cheaper medicines, and – the biggest potential coup – a cheap, effective vaccine. The two agencies share many of the same targets – malaria, HIV/AIDS, tuberculosis – and by working together, they can shorten “the distance between bench and bush.”

It was Shah’s first address to the NIH, and he immediately gave both agencies plenty to think about in the years ahead as their efforts become more unified. “This collaboration is the most powerful building tool we have,” Shah said, adding that “When we have this massive engine focused […] it will be a huge win for the world.”

My hope now is that everyone involved in promoting health – whether health care providers, researchers, or their supporters – recognize that this “massive engine” should be interacting, working together, and, of course, visiting one another. The majority of people might not have the opportunity to visit the NIH, like I did, but together we can bring its discoveries and its benefits to their doorstep.


Friday, January 21, 2011

Even More on the Merging of Medical Methods

Part 3: PM and CER go hand in hand


Francis Collins, MD, PhD, Director of the NIH, gave an example of a CER trial that helped researchers understand PM information and identify the best treatment for patients.

A clinical trial was conducted comparing chemotherapy to the drug gefitinib (Iressa) in patients with lung cancer. Gefitinib is a drug that specifically blocks the functioning of EGFR, a molecule important in cell growth. Some lung cancer patients have a mutation that affects EGFR, which can cause cells to grow uncontrollably, leading to cancer.

In this trial, it was found that gefitinib was more effective than chemotherapy in a subset of lung cancer patients — the ones who have a mutation in the gene for EGFR - but not in patients who do not have a mutation in EGFR.

Without CER, researchers might have thought that gefitinib was not effective in the overall population, when in fact some patients do much better with it. Now patients with a mutation in the gene encoding EGFR can be prescribed gefitinib instead of chemotherapy.

Rather than opposing each other, CER and PM should be used hand-in-hand to identify the best therapy for each patient.

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