By Hope Ditto. It’s the morning after the Academy Awards, barely twelve hours after the last little golden Oscar statue was presented, and your eyes are still burning with images of what our society conventionally considers “beauty” . The Oscars are essentially a parade of broadly accepted beautiful people with beautiful hair and beautiful figures in beautiful clothing adorned with beautiful accessories and beautiful shoes. Between last night’s red carpet glam-fest, that certain day of the year devoted solely to love and beauty two weeks ago and the annual release of the Sports Illustrated swimsuit issue last week, you’re probably feeling like February’s dished out all the beauty you can handle in a measly 28 days. In reality, it isn’t beauty you’re fed up with — rather it’s the media’s perception of what should constitute beauty that has got you so fed up. So if you’re at your wit’s end with the notion that a toned bikini bod and/or a pair of really expensive shoes are the be all and end all when it comes to appearances, keep reading, because our February Man of the Month – photographer Rick Guidotti – has devoted his career to capturing beauty of a different sort. And we could find no better way to celebrate our favorite February holiday (my apologies to GW and Abe) – Rare Disease Day – than by honoring Rick’s work.

Rick Guidotti

Rick Guidotti began his career focusing, like most fashion and portraiture photographers, on capturing traditional beauty. Educated at New York’s School of Visual Arts and based in Manhattan, Guidotti enjoyed the glamorous life of a successful high fashion photographer – snapping shots of conventional beauties for clients like Yves Saint Laurent, Elle and Harper’s Bazaar in traditionally beautiful places like Milan, Paris and London.

But all of that changed in 1997, when Guidotti was drawn to focus his work on a different type of beauty – the “beauty of genetic diversity.” Seeking to gain attention for this beauty he had discovered, Guidotti joined forces with Diane McLean, MD, PhD, MPH and together, the pair founded Positive Exposure (PE) – “a nonprofit organization that challenges stigma associated with difference by pioneering a new vision of the beauty and richness of genetic diversity.” The organization “utilizes the visual arts to significantly impact the fields of genetics, mental health and human rights” by forging “cross-sector partnerships with health advocacy organizations, governmental agencies and educational institutions.” 

PE does not just display Rick’s photos, though. They sponsor a number of initiatives and programs aimed at concurrently capturing the beauty of those suffering from genetic conditions and educating the broader public about them.

Still, they’re known best for their flagship undertaking – the Spirit of Difference gallery, which is a collection of images and video interviews of people, particularly children, living with various genetic conditions. PE has an online version of the Spirit of Difference gallery that you can check out here.

That’s not all PE does to impact and improve the lives of those living with these conditions, though. The organization sponsors and puts on “Self-Esteem/Self-Advocacy photographic and interview workshops” and “diversity workshops” and conducts “portable, sustainable educational and human rights programs and multi media exhibitions for physicians, nurses, genetic counselors, health care professionals-in-training, universities, elementary and secondary schools, legislators and the general public” around the country and the world. Using the photos and video interviews that Rick has taken, presenters (oftentimes Rick himself) shed light on not only the beauty but the unique spirit of his subjects, helping people to look past the differences created by their conditions and see that special, indescribable quality that so captivated Rick some 14 years ago.

But don’t just take my word for it. Check out one of Rick’s presentations, entitled “Redefining Beauty”.  I know I can’t think of a better way to celebrate the holiday than by checking it out! And, for more information about Positive Exposure and its undertakings, you can visit their website.

Innovation Nation: Recognizing the Benefits of Innovation in Health Care

Disruptive Women’s latest eBook has been extremely well received, including a mention in the small business section of WSJ.com. Download your copy to see what people are talking about, we know you won’t be disappointed.

By Casey Quinlan. In my daily business life, I have lots of conversations about healthcare IT (HIT), electronic medical records (EMR), personal health records (PHR), and the rest of the alphabet soup of acronyms used in health care’s march into the 21^st century. Each of those conversations always winds up leading to the same question, “what’s the ROI?” Meaning what’s the expected financial benefit to the provider deploying the technology.

This is most definitely a valid question – any enterprise looking at a technology product or service needs to have a solid understanding of what the business results of that technology can be, and what the cost of those results will be. Also, the likelihood of those results actually showing up is important: what’s the track record of the system or service on offer?

Here’s where the ROI question falls short of the mark in the current health care landscape: results become all about revenue. This is a particularly sticky question in health care, given that, outside of large health systems like Kaiser Permanente or the Veterans Administration, health care IT has been more about managing information and data flow within a closed system than about sharing information with patients, other providers, or payers.

The Patient Protection and Affordable Care Act (PPACA, or as it’s known in arguments across the US, “health care reform”) is the best attempt yet to get everybody in health care – from major hospitals to urgent care centers, from Park Avenue ob/gyns to free clinics – into the EMR pool. The carrots driving adoption are meaningful use incentive payments. The sticks are lower reimbursement schedules for failing to adopt EMR or to achieve that meaningful use.

Looking for strictly financial ROI in this landscape is almost impossible – there isn’t enough data yet to make any accurate statements about what the return, in dollars, might be. Vendors make promises, but anyone who’s been involved in a large-scale IT implementation knows that projects take a big commitment in time and treasure, and can often stretch far beyond the original scope of the project.

The ROI on EMR won’t be visible until EMR systems have been in wide use for at least two years within a provider organization. It will take another two years to see how the creation of state, regional and national health information exchanges (HIEs) return results in time or money.

A better question for HIT in its current state is, “what will it cost to do nothing?” I don’t just mean not getting the meaningful use stimulus payments – I mean the cost to health care providers who don’t adopt EMRs, or who don’t join up with state and regional HIEs as they come online.

The push to repeal PPACA that started when the balance of power in Congress shifted after the 2010 election risks making health care worse, not better, if repeal leads us back to Square 1. Health care – all parts of the process: providers, patients, and payers – has a stake in creating a better system. From Square 1, looking for the ROI on technology that can create that better system is only half the question.

What will it cost to do nothing? The answer to that question shows the way forward.

Susannah Fox of Pew Internet talks about Healthcare Out Loud, the concept of people using the internet to gather and share information in a very public way. 

Watch video

Susannah presents trends over time as related to internet access in general, for example:

• Not that long ago in 1995, 10% of American adults had access to the internet, as compared to 75% today.
• In the year 2000, 5% of American homes had broadband. Today that number is about 66%. 

She also discusses how mobile and broadband are multipliers to what people do online, and asks the question: “What’s the ROI on love?”

By Robin Strongin. I am pleased to present Disruptive Women’s latest ebook, Innovation Nation: Recognizing the Benefits of Innovation in Health Care.

Innovation in health care, broadly defined, is essential to the future. Innovation was a prominent theme in President Obama’s State of the Union address last month and funding for innovations is present in his budget released this week. But, are we, as a nation doing enough when it comes to innovation in health care?

To help us explore the multi-faceted world of innovation we invited outside experts as well as some of our own Disruptive Women to share their insights and expertise on this critical topic. I hope you find this ebook both timely and informative. The posts originally ran December 2010. As an added benefit we have included an expanded resource section, so you can dive even further into this topic.

Please feel free to share, cross post and distribute with others who would find this of interest. As always, we welcome your feedback and comments. All the posts remain on the blog and it’s not too late to comment on specific posts. Enjoy!

By Archelle Georgiou. The President quit smoking. Yup, it’s true. The First Lady said so during a press conference last Tuesday. Later in the day, Robert Gibbs, the Press Secretary, confirmed that the President has worked hard to kick the habit.

Well, only the Secret Service knows for sure whether or not the President is still sneaking a few puffs. But, regardless, I admire his accountability to himself, his family and to the public. Obama has ‘fessed up to his vice. “This is not something that he’s proud of – he knows that it’s not good for him,” Gibbs told reporters. Obama hasn’t tried to rationalize his behavior or made excuses. And, he hasn’t implied that simply cutting back is good enough. He has plainly said that smoking isn’t good for him…or for anyone else.

Compare that to Surgeon General Dr. Regina Benjamin. Let’s call it like it is…she’s fat. And, so are 63% of Americans. But, the real question is: Is she accountable to herself and, more importantly, to the public? Is she helping address the obesity epidemic…or is she fueling it?

Having a svelte figure is not, and should not, be a prerequisite to being “America’s doctor.” Many who have defended the Surgeon General argue that her job is to make health care and policy decisions for the country — “not to look hot in a pair of skinny jeans.” Good point, great sound bite, but clearly a defensive stance. No one expects her to be thin–just realistic and evidence-based about her current weight.

Experts estimate that Benjamin is at least 40 pounds overweight and wears a size 18. Women in this size range report a BMI between 32-34, and using standard American size charts, her waist measurement is estimated at 34.5 inches. She is not a little overweight or in a gray zone. Benjamin squarely falls into the obese category and likely has an abdominal girth that is dangerously close to, if not over, a critical threshold. (FYI…a waist size greater than 35 inches in women and 40 inches for men is considered high risk.)

There is no question that she needs to lose weight. However, when asked about her weight issues in interviews, she rationalizes by focusing on her treadmill endurance and her goal of climbing Mount Kilimanjaro. “The goal isn’t to lose weight,” Benjamin frequently says. “It’s to be healthy and enjoy it.”

Same skeleton...with and without excess fat.

Take a look at this picture of a body with and without excessive fat. It’s painful just looking at it. And, Benjamin doesn’t have a weight loss goal? Really? Not even 5-10% of her body weight? What kind of a message is this? What if Obama said that the goal was not to stop smoking but to be healthy? The subliminal message: It’s okay to be overweight, oops, obese. (more…)

By Lois Privor-Dumm. A decade can make a difference.  Eleven years ago this month, I had the privilege of launching pneumococcal conjugate vaccine (PCV) here in the US.  It was a vaccine that I knew would have a profound impact on children and families all over the country, Protection against severe meningitis and other infections allowed American children to move along the path of their lives –with a low risk of this potentially life-changing catastrophic disease.

Children in developing countries though faced a different picture over the past decade. Pneumococcus in the developing world not only causes severe meningitis, but is a leading cause of pneumonia.  Without access to PCV, 3 month-old Dominic Mwangi, found himself in the district hospital undergoing antibiotic treatment for life-threatening pneumonia.  His mother was away from home and family for 3 days.  Dominic was lucky and recovered; An astonishing 1.5 million children, mainly in Africa and Asia, are not so lucky.  Almost half of all severe pneumonias and meningitis deaths are thought to be caused by bacteria that can be prevented by the use of vaccine. Much more disease could be prevented with better nutrition and access to care.   Dominic, because he was born in Kenya, was 112 times more likely to die of pneumonia than an American child.  In Afghanistan, that number is 400. 

2011 paints a more promising picture.   A new generation of vaccines from Pfizer and GSK providing the broader protection needed to fight pneumonia and meningitis in developing countries has been made available in Nicaragua, Yemen and now Kenya within a year of launching in the industrialized world.  By 2015 more than 40 countries will do the same. 

What changed?  It was a convergence of factors – pharmaceutical companies, seeing a greater likelihood of demand with secured financing, were willing to offer low prices to those most in need, supplying at prices of less than 90% of those in industrialized countries.  Low-income countries wanted the vaccine because they saw the potential impact and a plan again for financing.  Financing was needed – and eventually made possible by Italy, UK, Canada, Russia, Norway and the Bill and Melinda Gates Foundation who donated $1.5B to the Pneumococcal AMC, an innovative financing mechanism and the GAVI Alliance who is making up the price differentials that low-income countries cannot manage as yet.   

It took a lot of effort to see these pieces fall into place, but one that can’t stop with just this example.   In a time where all of us are paying attention to how to do more with less, efforts like this one provide an important lesson of what is possible. Investing in health, individual countries have made dramatic economic progress and this will help all of us.  Take a look at this Hans Rosling video and you’ll see why investments in health are, well, a good investment.   Children of all nations deserve a solid foundation to become healthy adults. We have more to do, we need to keep going.

By Hope Ditto. So if you’re like me and – single or taken, happy or miserable — you disdain Valentine’s Day annually with the sort of unbridled hatred most people reserve for only the IRS and Christina Aguilera’s rendition of the National Anthem, take heart! If you, like me, feel a rush of irritation when you spot one of those sappy grocery store displays (groaning under the weight of the overpriced heart-shaped chocolates it is so desperately trying to promote) or are subjected to yet another of the cutesy, romantic commercials that infiltrate our daily lives sometime after the winter holiday decorations — a contrast in all of their stark, primary-colored glory — are relegated to the clearance section, fear not! As someone who, beginning just after MLK Day, feels an innate sense of impending doom perfectly correlated with the slow transition of my world from the full ROYGBIV color spectrum towards such an abundance of pink and purple I could swear someone swapped my Ray-Bans for rose-colored glasses, there is a (small) glimmer of hope this year!

But if you’re like me and also believe that laughter is the best remedy for any ailment (including a case of what my friends have appropriately dubbed the “Valentine’s Day Blues”), I’ve got you covered [well, CBS Cares does but I’m the one writing about it so I’ll take some credit!]. Not only are their Valentine’s-themed PSAs informative, culturally relevant and just racy enough to keep your finger off the fast forward button on your DVR remote, they are downright hilarious – guaranteed to evoke a healthy laugh from even a “Valentine’s Day Grinch” like myself.

The PSAs are part of CBS Cares’ Valentine’s Day Campaign on Testicular Cancer. Along with airing the PSAs – which encourage men to “do something special for [their] woman on Valentine’s Day” by examining themselves for testicular cancer, because “this Valentine’s Day, why give a diamond when you can give the family jewels?” – the campaign (just one of the several currently being promoted by CBS Cares) offers additional information, resources and social media tools designed to both educate the public and get the word out about testicular cancer prevention. Plus, if you’re like me and detest Valentine’s Day, how can you not support any campaign encouraging your man to forgo the traditional V-Day gifts?! (I recognize that I may be alone on this one.)

CBS Cares is a lot bigger than just this “Family Jewels” bit, though. Created by CBS Television Network in 2000, the CBS Cares campaign is a commitment to use CBS talent to create PSAs promoting a variety of issues — from child abuse to menopause, identity theft to epilepsy and everything in between – in need of a platform. Though it began as just a collection of 15 second or so PSAs, CBS Cares has evolved into so much more. As their website explains, “With Network PSAs as its fulcrum, CBS Cares has grown into a multimedia project involving many areas and talents at CBS: Entertainment, News, Sports, Digital Media, Radio, CBS Outdoor, Communications and Marketing.” Some are themed around a holiday and put into circulation for a set period of time (like the Valentine’s Day testicular cancer one or like this Christmas-themed one encouraging women to get regular pap smears), while others are more general and thus relevant for several months or years (like this one on getting a regular colonoscopy or this one on supporting our troops). There are some “core” issues that the network continues to promote, but staff are always on the lookout for new, underserved causes that could be bettered through a CBS Cares campaign. As time has gone on, the network has not only increased the scope of these mini-campaigns but also their monetary commitment. In 2009 alone, the network scheduled more than $200 million worth of public service announcements. While all of the creative work (talent, copy, production, etc.) is done in-house, CBS Cares notes that “The starting point for every PSA–before scripting begins–is close consultation with experts on the frontline of each field to learn what messages they feel are the most important to convey.”

So, whether you are like me or you are a Valentine’s Day enthusiast who has been counting down the days, shopping for the perfect dress, tearing up at the commercials and walking around relishing in what you know for certain is love in the air (don’t worry, I’m not here to judge), the PSAs are worth a view (and definitely worth forwarding along  if you are like me and lucky enough to have someone special in your life, Valentine’s Day enthusiast or [most decidedly] not).

From all of the Disruptive Women in Health Care, Happy Valentine’s Day!

By Robin Strongin. I am thrilled to annouce our four newest Disruptive Women bloggers. Through their work these women demonstrate an unrelenting passion to improve the health and well being of everyone – men, women, and children. Take a few minutes to look over their bios. Also, stay tuned for future posts from them, which I can promise won’t disappoint.

	Bernadette Melnyk, PhD, RN, CPNP/NNP, FAAN, FNAP is currently Dean and Distinguished Foundation Professor in Nursing at Arizona State University College of Nursing and Health Innovation. She is a nationally and internationally recognized expert in evidence-based practice as well as in child and adolescent mental health.
	Constance Garner, PhD, EdS, MSN, RN is the Policy Director in the Government Strategies Practice Group, and Executive Director for Advance CLASS, Inc at Foley Hoag, LLP. Her areas of expertise include health care, disability, long term care, and education.
	Dr. Margaret “Muggy Do” Dickinson, Ph.D. (Dr. Do) co-founded the Art and Drama Institute, Inc. (ADTI) and serves as the company’s CEO, president, and program director. Dr. Do and the Art and Drama Therapy Institute’s Inspirational Choir and Moroccan Ensemble participated in the Disruptive Women’s December Holiday event.
	Dr. Sirkku M. Sky Hiltunen, Ph.D., Ed.D., RDT-BCT, ATR-BC, BCPC, MT, BCPC, LPC (Dr. Sky) co-founded the Art and Drama Institute, Inc. (ADTI) and as executive vice president, and executive arts director.

By Jane Sarasohn-Kahn. In February 2011, 1 in 10 jobs in the U.S. is in health care employment; nearly 14 million people in the U.S. work in health care employment, with health care representing 10.7% of all jobs in America. The growth rate of health care jobs rose 1.2 percentage points since the recession kicked in late 2007. Since the start of the recession, health employment grew 6.3%; the number of non-health jobs fell by 6.8%. The chart starkly illustrates this story (click the chart to enlarge for easier reading).

Altarum Institute has crunched the health job numbers from the Bureau of Labor Statistics (BLS) and published their analysis in Health Sector Economic Indicators, published February 9, 2011. Altarum’s top-line: health care employment has reached an “all-time high” in the U.S.

Outpatient care settings accounted for the fastest-growth in jobs with a 12-month rate of increase of 5.3%. The hospital segment grew the slowest, at a mere 0.7% — basically flat-lining (though still representing, by far, the largest segment in terms of jobs). Home health jobs grew by 4.3%.

Health Populi’s Hot Points:  It is impossible to separate the U.S. health microeconomy from the nation’s macroeconomy. With only 39,000 new jobs added to the U.S. economy in January 2011, we economists look for bright signs wherever we can find them. One-third of this increase in total new employment was in health care.

The number of jobs in the health sector will continue to grow. This will continue to be the case for the next decade, at least. Among many drivers for health job growth, two are at the top of the list in 2011: health information technology and the aging of the population. There will be intense demand for workers skilled in health information technology, based on the adoption of electronic health records by providers (both doctors and hospitals), along with growing digitization of all health information generated by digital imaging, point-of-care diagnostics, smart infusion pumps, and other medical devices. Dr. Blackford Middleton of Partners HealthCare projects a need for an additional 40,000 to 160,000 workers in health IT in the coming years.

As for aging, the chart shows already-growing demand for more home care workers. Boomers won’t age quietly into that good night, wishing to avoid institutional care in nursing homes. So home care work will be re-defined back in the person’s home — requiring even more digitally savvy workers to re-imagine and re-design what home care is. This will mean more jobs for new kinds of design and ideation, applying the disciplines of anthropology and sociology, and of course, more IT developers who can marry, say, miniature accelerometers to milk bottles and sensors to scales.

How we define health care jobs today will morph into a new definition for jobs in health tomorrow.

Originally posted on Health Populi on February 10th.

By Hope Ditto. It has been almost a year since Congress passed the Affordable Care Act (ACA), but it seems that the questions and concerns surrounding it and its implementation are increasing rather than decreasing with time. From its legality to its funding, threats of repeal to promises to replace, buzz about the ACA from Wall Street to Main Street and up and down Pennsylvania Avenue has reached a fever pitch since the 112^th Congress convened last month.

We have accepted that things are currently in limbo with regards to health care reform and the provisions born from the ACA, but that does not mean that those in the health care industry can call a recess until Congress can come to some sort of consensus/final decision on health care reform.

Instead, it is up to health care industry to sort through the facts from the rumors, clarify the ambiguities and quantify the results – all while knowing full well any question they just answer or problem they just solved could be reversed, revised or removed altogether overnight.

Considering all of the challenges and uncertainties facing the health care sector, it seems that Academy Health’s annual National Health Policy Conference (NHPC), this year themed “Putting Health Care Reform to Work” came at just the right time. The conference, held the past two days in downtown Washington, brought together experts from all areas of the health care industry – academics, insurance executives, physicians and other stakeholders – to discuss the impacts of the ACA, how to implement them and what to expect from future provisions (both the ones currently slated to be implemented and those being discussed under “repeal and replace”).

Highlights of the conference included plenary sessions with leaders and policymakers on the Hill and at a number of health agencies and organizations, breakout sessions on topics ranging from innovation in health care to the impact of ACA on various populations (i.e. Medicaid and CHIP, employers, etc.) and everything in between. There were also meaningful panel discussions on health care reform, the future of the industry and how various stakeholders are approaching policy in the interim. More than anything, though, the conference brought together people from all over the health care industry and initiated a dialogue about how disparate entities are approaching the many curve balls presented to them in the wake of ACA’s passing.

While nobody – not even a combined entity encompassing over 700 leaders in the health care industry – knows what lies ahead for health care reform and the Affordable Care Act, gatherings like NHPC offer unique insight as to how those making the tough decisions are approaching this developing situation, and preparing for whatever results from it. While there are disagreements and discrepancies, debates and deliberations, it is heartening to see firsthand that the tough questions are being asked and the “what if” scenarios are being considered by those with possibly the greatest ability to directly impact our lives – those providing us care (either directly or by funding it).

Check the NPHC website soon for links to webcasts of selected plenary sessions, which will be posted as they become available.

By Mary Grealy. There’s no question that, if we’re ever to have effective health reform in this country, improving our healthcare delivery system has to come through a public-private partnership.

One of the key elements of the Affordable Care Act is the creation of the Center for Medicare and Medicaid Innovation (CMMI), an entity that will be charged with evaluating concepts for healthcare delivery reform and then putting into action demonstration projects that have the potential to improve healthcare quality and increase cost-efficiency.

Fortunately, much of this ground is already being broken in the private sector.  Throughout the country, hospitals, pharmaceutical companies, medical device manufacturers, group purchasing organizations, insurers, distributors and other health sectors are succeeding in developing new practices and technologies to improve patient care, control costs and promote value.

At the Healthcare Leadership Council, we’ve compiled a number of these examples, with supporting metrics, and provided them to Center for Medicare and Medicaid Services administrator Dr. Don Berwick.  We call the document the HLC Value Compendium.

The purpose of the publication is spelled out in the forward that McKesson Chairman and CEO John Hammergren and I wrote.  It says, “This compilation has a definite and important purpose.  The promising work being performed by private sector healthcare organizations can serve as models for policymakers seeking to inject innovation into public programs and thereby moving our nation’s healthcare system to one more strongly defined by quality and cost-effectiveness.”

Originally posted on February 3rd on the Prognosis Blog.

By Glenna Crooks. This is the week many of us will consider – or finally make – Valentine’s Day purchases. Some of us will consider chocolate. Maybe more of us should.

I wondered about that as I saw some disparate bits of data over the weekend. An article on Valentine’s Day spending was informative: couples will spend just under $70 on each other and we’ll spend, on average, $5 on pets, $6 on friends, $5 on teachers and $3.50 on co-workers.

What will we be buying? In all, about $12.B in treats for the day: $3.5B on jewelry, $1.6B on clothing, $3.4B on dinner, $1.7B on flowers, $1.5B on candy (of which $285M will be on chocolate) and $1.1B on greeting cards.

I get interested in items like this when I hear that we ‘can’t afford health care.’ I’ve noticed over the years how we can spend more on the launch of a blockbuster movie in a weekend than we spend immunizing our children against measles, mumps and rubella in a year. 

In the past, I might have gone on a rant about that but this weekend another set of statistics caught my eye as well; those related to chocolate. Seems that chocolate-making companies have higher margins than other food companies, raking in 11.7% profits over the 8.1% of others.

Chocolate is a discretionary, luxury item and – though some friends will disagree – not at all essential to a person’s health or well-being, so we need not quibble over those margins, argue for price controls or suggest the industry become a public utility. That same article cited per-capita rates of chocolate consumption, however, which got me to thinking that consumption of chocolate appears to be correlated with two items we care about in health care: expenditures and satisfaction.

Sure enough! Though not a perfect correlation, it’s directionally so. Countries with higher rates of chocolate consumption have lower rates of dissatisfaction with health care and lower per capita health care spending. Wow!  Note in particular the difference between Switzerland and the US. The Swiss eat twice as much chocolate, have a dramatically lower percentage of people who grouse about healthcare and spend nearly half per capita as Americans. 

The policy wonk in me says perhaps we ought to make chocolate a covered benefit and promote its use! And, I’m only half kidding.

I was excited to learn of the newly proposed National Center for Advancing Translational Research (NCATS) at the National Institutes of Health (NIH) because it offers an unparalleled opportunity to advance translational medicine and improve human health.

Last year, despite more than 100 billion dollars in research spending, only 20 drugs came to market. This is much too slow and needs to be vastly improved. Further, fewer than 200 of the 7,000 rare diseases have any available therapy options. The current system of therapeutic development has been failing patients and consumers for far too long and the time to transform translational medicine is upon us. Our network at Genetic Alliance includes more than 10,000 health related organizations, 1,200 of which are disease-specific advocacy organizations representing the millions of Americans suffering from diseases and conditions. For us there is an urgent need to bring the promise of translation to fruition.

I think that NIH has both the potential and the responsibility to leverage its existing and emerging programs and resources to accelerate translational medicine. The passage of the Cures Acceleration Network highlights that both the American public and Congress share this expectation that NIH will play a leading role in improving human health outcomes through translational research. The establishment of Therapies for Rare and Neglected Disease is another example. There is a gap in our ability to create therapies, and we need to be working to fill it now.

I’ve worked for a number of years with all of the Federal agencies charged with promoting the nation’s health. There are enormous silos preventing the coordination essential to developing timely and robust diagnostics and therapies. The NCATS is essential for this mission. We also work with academia, biotech and pharmaceutical companies and understand the limitations of each of them, and of NIH. A coordinated effort, among academia, biotech and pharmaceutical companies, and advocacy organizations, is critical to overcome the problems inherent in drug development, particularly in these early years of precision (personalized) medicine. NIH is upping the ante – haven’t we all heard, in every meeting: “Someone has to lead, someone has to step up!” This is it. We must all step up to help put the pieces together for a new system of translation.

We all know numerous ways in which the health care system is broken. Right now, so is the pipeline trickling into it. It is time to put aside turf, territoriality and all the man-made obstacles to these already complex scientific challenges. It is time to work together, and here’s hoping this new center has a radically open and innovative culture.

By Gwen Mayes. To kick off National Heart Month, the U.S. Department of Health and Human Services launched a nationwide campaign, Make the Call. Don’t Miss a Beat to educate, engage and empower women and their families to learn the seven most common symptoms of a heart attack and encourage them to call 9-1-1 as soon as those symptoms arise.

A woman suffers a heart attack every minute in the United States. Yet according to a 2009 American Heart Association survey only half of women indicated they would call 9-1-1 if they thought they were having a heart attack even though they were much more likely to call if a loved one had symptoms. And there is not a good explanation. Some of the reasons are competing priorities (e.g., child care, transportation), denial, not wanting to be a bother, financial worries, and embarrassment.  Many felt that if they just “dismissed” the symptoms they would go away and that even if they went to the emergency room, their symptoms would not be taken seriously.

As a woman living with a congenital heart disease I often get palpitations and have had every one of these thoughts – usually in the middle of the night.  Fortunately, I have never had a heart attack but sometimes I wasn’t so sure and if the symptoms persisted, I knew it was time to take action. One night I took a taxi to the emergency room; another I called a heart “sister” who talked me through the panic until I felt better.  Under no circumstance would I try to drive myself to the emergency room, a point the campaign emphasizes as well.

The seven heart attack symptoms women should be alert to look are:

1. chest pain or discomfort
2. unusual upper body discomfort
3. shortness of breath
4. breaking out in cold sweat
5. unusual or unexplained fatigue (tiredness)
6. light-headedness or sudden dizziness
7. nausea (feeling sick to your stomach)

For more information, go to WomenHeart, the National Coalition for Women with Heart Disease, the nation’s only patient advocacy organization serving over 40 million women living with or at risk of heart disease. As a 2005 graduate of their Scientific and Leadership Symposium, I often speak to women about the signs and symptoms of a heart attack and the importance of knowing when your body well enough to distinguish symptoms of a heart attack from everyday ailments.  Also, talk to your doctor and learn when to “make the call.”