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.

Blending Art and Science in the Classroom

The connection between art and science can be difficult to make. The exacting precision of studio art and the precise exercise of a lab experiment seem similar in words alone. As STEM education becomes more and more critical, and funding for the arts are cut from school budgets, perhaps it is time for these two strangers to become partners in education. Not sure it can be done? This ARTstronomy project in Dublin lays out the steps to bridging art and science.

Profiles of Promise

“Medical care cost is reduced. And then, of course, it gives people this hope and the opportunity to enter back into the work force and become productive members of society.”

~Representative Dave Reichert (R-WA-8)

Above are excerpts from Profiles of Promise – a campaign lead by United for Medical Research that highlights Members of Congress who have distinguished themselves through advocacy for health research.

Congressman Reichert’s quote says it all. We know that investments in health research can not only reduce the cost of medical care, but enable people to live more productive lives. This message is even more salient at a time when the nation’s budget deficit is being driven by unprecedented spending for health care. Better and more cost effective treatments offer a way to bend the cost curve.

But there’s something to be said for increased productivity too. When we’re productive, we’re working and earning an income, which means we’re paying into the tax system. Tax revenue, in turn, will help governments at the local, state, and federal level that are still reeling from the down economy. These revenues will enable government to fill the funding gap with domestic dollars rather than continuing to borrow from overseas.

Without a doubt, medical research is part of the solution to today’s biggest challenges. Profiles of Promise recognizes leaders from both sides of the aisle who understand and act on this. As you look at the members profiled in the campaign, try to find your representatives and if you do find them, be sure to thank them for standing up for medical research. If you can’t find your members of Congress featured, ask yourself, why isn’t my representative here?

10 Minute Drill

If you only have ten minutes to spend online this weekend, this is where you should be headed to read up on some fun and interesting research-related news.

For lovers of Academy Award winning films and speech impediments.

Is being honest really just about willpower?

Maybe it's because I recently finished reading Water for Elephants, but either way there's something to be said about the intelligence of these giant mammals.

In the policy/job hunting arena, take a look at potential effects of recent patent reforms on small biotechs.

And finally, a discussion on what really makes a PhD a PhD.

Medicine's Future is Up Close and Personal

Today's guest blogger Arifeen Rahman, an intern with Scientists and Engineers for America (SEA), takes a stand for personalized medicine.




In 2000, Adriana Jenkins’ life was just starting to blossom. She was 31 years old, engaged to the love of her life, and a successful publicist for biotech companies. In 2001, Jenkins was diagnosed with an aggressive form of breast cancer. Her doctors told her that she had a 40% chance of survival for the next five years.

In the face of these odds, a small glimmer of hope emerged. Jenkins’ doctors uncovered that she had the genetic marker HER2, found in 25% of all breast cancer patients. And at the time, the pharmaceutical company Genentech was developing Herceptin, a drug designed to specifically target breast cancers driven by the mutation in HER2. Jenkins enrolled in Genentech’s clinical trials for Herceptin, and in a triumph over her five-year odds, she lived for 10. Before Jenkins passed away at the age of 41, she wrote a piece for Forbes Magazine, urging Congress to incentivize research in “personalized medicine.”

Jenkins’ story demonstrates the revolutionary power of this new field. Personalized medicine unearths great possibilities through a relatively simple idea: genetic makeup should directly inform individualized healthcare. Patients can uncover mutations in their DNA through a diagnostic test, and doctors can then prescribe drugs designed to target genetic mutations which drive certain diseases. These “personalized” drugs have a higher chance of successfully treating the disease. In addition to helping consumers, personalized medicine can benefit the pharmaceutical industry. Developing drugs that work across the board takes a long time to accomplish. Focusing on a narrower set of patients with genetic markers allows biotech companies to make larger strides in progress.

Still, personalized medicine has its potential drawbacks. On one hand, genetic testing could lead to a progressive, individualized approach to medicine. On the other hand, genetic testing could devolve into a twisted new game of looking at a consumer’s medical horoscope. The personalized medicine market is growing at an exponential rate of 11.56% every year. It is projected to be a $148.4 billion industry by 2015. The profit incentive of mass marketing direct-to-consumer genetic test kits could lead to uninformed decision-making by consumers, who might misinterpret genetic markers as fate. Genetic testing offers an insight into our body’s makeup and behavior, but it does not give definitive predictions of our health in the future.

Even with its limitations and potential drawbacks, personalized medicine remains a beacon of hope for the present and future, bringing us closer to unraveling the mysteries of the human body. However, several roadblocks remain on the way to making personalized medicine a widespread reality. Even though scientific research on genetics is rapidly evolving, the current business climate is not conducive to a greater focus on personalized medicine. Biotech companies have voiced concerns that further narrowing their target populations will create a smaller market and destroy profitability.

The key to reversing this trend is gaining Congressional support for personalized medicine. Federally funded grants and incentives for developing specialized drugs can bridge the current gap of uncertainty. At the same time, dwindling research budgets must be reinvigorated. To stimulate change, and grant Adriana Jenkins her dying wish, personalized medicine should be placed front and center on the political stage. This developing field can give millions like Jenkins a priceless extension of life – but only if we make it a priority.

Arifeen is a junior at Saint Francis High School in Mountain View, CA. As an editor of her school newspaper and captain of the Saint Francis Speech and Debate team, she is excited to combine her passion for writing and research with her career goal of being involved in the sciences. In her spare time, Arifeen paints, swims, and writes short stories.

Patient Voice: Chronic Fatigue Syndrome

Photo credit: o5com on Flickr
Note: This image is not of anyone related to this post.

Chronic Fatigue Syndrome (CFS) is a largely misunderstood condition, which makes March, National CFS Awareness Month, all the more important in bringing it to light. New Voices interviewed a young woman living with CFS symptoms since 2007. From diagnosis to treatment to daily life, she has faced difficulties that many people don’t understand and some people don’t even recognize as a real condition. Thank you to Carol, whose name has been changed, for sharing her story.

New Voices (NV): How would you describe CFS to those people who don’t understand it, especially those who are skeptical of it being a real condition?

Carol: CFS is more than just being tired. It’s not just a minor inconvenience that you work around. It’s an everyday occurrence that is often more debilitating than just a nuisance. CFS demands serious lifestyle changes. Fatigue is definitely a large part of it, but it usually isn’t the most problematic symptom for me. Digestive issues, muscle and joint pain, vertigo, migraine headaches, feeling cold, having trouble focusing, memory problems, and many other symptoms find their way into daily life for someone with CFS.

NV: What kind of limits do you face in your daily activities? Are there particular things that people might otherwise take for granted?

Carol: A large percentage of people with CFS are generally type-A people, so the limits in daily activity are the most frustrating part of the illness. For years, I was incredibly active and involved in everything. I’d play two sports during the same season, while taking dance lessons and staying involved in school clubs and church. I was pretty much never in my dorm room during college because I was involved in so many activities. Now, I can barely work full-time (with three days of telework a week), and I typically crash on most weeknights and weekends.

NV: How does the stigma surrounding CFS affect you – how you cope, who you tell, etc.?

Carol: The stigma surrounding CFS is almost as frustrating as the disease itself. The name implies that I’m just tired all the time. Well, let’s be real – everyone gets really tired at some point, especially in large metro areas with a hurry-up culture. The issue is that most people don’t get past the name of the illness itself to start with. In fact, I had one supervisor who told me that he/she also gets tired a lot and that they could probably get a doctor’s note to work from home, too. They also questioned if I was really sick at all or just using the system to make having a job easier. This is a pretty typical interaction with people who know nothing more than the name of the illness.

NV: Given your experiences, do you find yourself being an advocate about CFS?

Carol: I do, at least in my work, find myself advocating about CFS and explaining it. I’m more focused on getting through the day and keeping up with daily life, but I do find there are moments of education when I get to talk to people about the disease and get past the stigma. It isn’t something that comes up in everyday conversation, but I have talked with a lot of coworkers and family members about CFS.

NV: Do you think that the stigma surrounding CFS has kept people from coming forward and advocating about it?

Carol: Yes, that’s true. If you look at the stories you see in big media, it’s most often people who are well-established in their careers or well-known, so they’re open to talking about their diagnosis. It’s like you have to prove yourself in your work before you can talk about CFS. Because of the stigma, most people don’t want to be known for CFS, let alone advocate.

NV: What message do you have for researchers, who might themselves investigate CFS?

Carol: The research has focused a lot on whether it’s real or not, and finding the cause, but I’d like to see them move forward and look for treatments. We know CFS is here, so let’s deal with it. I don’t know if more stories like mine would help getting people interested and involved, but I hope it does.

Star Wars and Whooping Cough?

Found this clip encouraging immunization on Twitter from @sethmnookin about a month ago. What modern classics do you think would be effective for sending public health or research messages today?

Can Cuts Increase the Deficit?

Comic credit: Clay Bennett, The Christian Science Monitor

Senator Manchin (D-WV) recently sounded an alarm, stating “we cannot ignore the fiscal Titanic of our national debt and deficit.”

He’s right.

Our debt is driven by two factors – a declining revenue stream and increasing government spending. In FY 2010, the federal government spent $3.6 trillion dollars, but our revenue was only $2.2 trillion. To fill the gap, the US borrowed $1.4 trillion dollars.

Clearly, new fiscal policies are necessary if the nation is to move away from deficit spending. Policymakers have the authority to alter revenues (through tax policy) and expenditures (through appropriations).

One of the major drivers of our deficit is spending for health insurance programs; Medicare, Medicaid, and CHIP account for $753 billion of federal spending (21% of the budget in 2010). Much of these costs, in turn, are driven by the state of health in US – according to the WHO, the US ranks 37th in the world for overall health indicators.

The bottom line is that unhealthy individuals require more treatment and drive up the cost of care. The US government has historically been very supportive of the health research agencies that can lower the cost of care, foster discovery of new treatments, and seed economic development. But these vital messages have been lost in the vociferous debate over spending.

So what will happen if we cut back on health research? Failure to support health research will increase our debt burden. We need research now more than ever to find innovative solutions to the generational and interlinked challenges that we face.

Education Thought-Starter

New Voices is off tomorrow in celebration of a well-done work week. (Wouldn't it be lovely if every Friday was this way?) But never one to leave you hanging - especially on a holiday! - here's a thought starter for you to discuss over some green goodies tonight or about town this weekend:

With all of the cuts being discussed in the budget debates here in Washington, how will this effect the future of STEM education in the U.S.? 

 The conversation starts in the comments.

Hat tip to New Voice @JLVernonPhD who shared this on Twitter. Follow us @NV4Research.

Research!America Annual Events

When I first started at Research!America, there was one date I didn't stop hearing about, a fateful Tuesday in March. Each year, our organization hosts four events in one day: a board meeting, an annual meeting, a national forum, and an awards dinner. From breakfast to dessert, it's a day of the best minds and leading voices in the health research and advocacy communities. Yesterday was no exception.

All four of the events of the day are interesting and important, but my favorite every year is the policy-centered National Health Research Forum. I love seeing the leadership of our major health agencies discuss the issues of the day with captains of industry, extraordinary scientists and patient advocates. If you missed it, you can listen to the podcast of the program.


If you have trouble listening to the full audio file, or would like to listen to a particular section, click here.

It's possible there is some bias here because I do a lot of the planning for the Forum. Being an organizer makes it easier to see all the hidden layers of planning and appreciate the level of detail in the event. Like the broken records: most amount of participants in the program ever - both in terms of guests and speakers; fundraising goals met and exceeded; and the incredible diversity of our sponsors. Or the little things: watching advocates network and make connections, seeing all of the new materials we produced this year make their way into interested hands, or having no last-minute emergencies. It makes all of the planning worthwhile to know that more and stronger advocacy for research to improve health was inspired in that ballroom.
By: Heather Benson

Thoughts from other New Voices:

Jamie Vernon
Last night renewed my faith that we have to right tools and the right people to deliver the message to the American people that science is vital to our success as a nation. I have attended star-studded galas in the past, but nothing prepared me for the guest list at Research!America's Advocacy Awards. From my 15-minute conversation with Francis Collins before the event that covered everything from my research interests to my science communication efforts, through to the end, when I shook hands with Charlie Rose and thanked him for his commitment to science, I was overwhelmed with appreciation for Research!America. The speeches from the Honorable John Porter, Dean Kamen and Mayor Bloomberg inspired me to continue to advocate for science. I only hope the message that was delivered to that room will reach beyond the Congressmen and women who were in attendance.

Sara Gallagher
I was very excited to attend Research!America's Advocacy Awards this year. One of the highlights of my evening was getting the opportunity to talk with Mike Castle, the former U.S. Representative from my home state of Delaware, who has always been a supporter of research to improve health.

Christian Torres
For many of us, it seems as if the people who shape our nation's health - government officials, researchers, academics, industry, media, and the public - never truly come together. At last night's dinner, however, I got to see it happen. With 500 people socializing, the conversations might have been light, but it's encouraging to know that there is indeed a large group of engaged, dedicated, and passionate advocates who can take their various interests and connections to the next level. I can only imagine the deep conversations and bold ideas that will develop out of the dinner and our National Forum. At least now I know that talking and working together for health isn't such a stretch of the imagination.

Pallavi Phartiyal
Research!America's annual advocacy awards dinner is an effective reminder of the extent of support that medical research enjoys from a wide cross section of public, especially from unusual suspects outside the research community - from a TV talk show host to a city mayor.

Images courtesy of Mike Gatty.