You don’t have to agree with Congresswoman Gabrielle Giffords’ politics to admire her strength and courage of conviction – her unwavering spirit and refusal to give up throughout both her career and her recovery are emblematic of what it means to be a Disruptive Woman (hence why we bestowed Congresswoman Giffords as an honorary Disruptive Woman a few months back).

While Giffords might not have spent the past year leading our country in Congress, she has spent it leading by example. When Giffords and her family and friends spoke with ABC News’ Diane Sawyer and gave all of us the opportunity to witness her remarkable recovery firsthand, she taught us many important lessons about strength, courage of conviction and refusing to give up on your dreams (not to mention about her remarkable medical and rehabilitation teams and the role of musical therapy, a treatment pioneered by Disruptive Woman Concetta Tomaino, DA, MT-BC, LCAT, all of which we shared with you in a past post).

This weekend, Giffords demonstrated once again what it means to be not only a Disruptive Woman but also a leader, and taught us all yet another lesson, this one in humility, when she announced in a video message to constituents and supporters that she would be resigning from Congress this week.

In the video, posted to her campaign website, Giffords thanked viewers for their support and then broke the news, stating, “I don’t remember much from that horrible day, but I will never forget the trust you placed in me to be your voice. Thank you for your prayers and for giving me time to recover. I have more work to do on my recovery so to do what is best for Arizona I will step down this week.”

Watch the full video here:

Rep. Gabrielle Giffords Steps Down from Congress

Don’t for a moment think that Giffords is calling it quits for good, though (after all, that would NOT be the Disruptive thing to do). As she states at the end of her two-minute message, “I’m getting better. Every day, my spirit is high. I will return and we will work together for Arizona and this great country.”

No matter what she has in store for the future, one thing is for sure – Congresswoman Giffords is an inspiration with an indomitable spirit and we cannot wait to see what Disruptive thing she does next!

Disruptive Women is proud to annouce our December Man of the Month Claude Gerstle. Claude was dedicated to patient care for over thirty years before he became disabled in a bicycle accident. He founded a full service ophthalmologic clinical practice that focused on the diagnosis, management and surgical/medical treatment of ocular diseases. Though Dr. Gerstle can no longer serve his patients needs, he still loves medicine and science. He has always been active in MIT, where he graduated in ’68. For the last three years he has been a trustee of MIT’s Corporation.

By Claude Gerstle. I became involved with stem cell research eight years ago after I suffered a spinal cord injury while riding my bicycle. Once I was well enough to travel, my daughter took a leave of absence from work and we spent two years traveling around the country visiting doctors, ethicists and politicians making a documentary about the social issues raised by embryonic stem cell research (TheAccidentalAdvocate.com). I became very excited about stem cell research and its potential to provide treatment for some of our most intractable diseases.

In 2005 Dr. Hans Keirstead atUniversityof California Irvine published some remarkable results demonstrating the ability of a stem cell treatment to enable spinal cord injured rats to walk again. Cheer on Corporation applied to the FDA for clinical studies using his technique. There drug application, over 20,000 pages long, took almost 6 years to receive approval. Despite all their hard work, in November 2011 they announced they were pulling the plug on this research project because they will not be able to afford the money and time needed to make a commercially viable product.

While disappointing, this is not the death knell of clinical stem cell research. As an ophthalmologist I recently chaired a panel of stem cell researchers who have made impressive progress working on retinitis pigmentosa and macular degeneration. Treating an eye disease has some advantages over treating a disease of the nervous system. Cells introduced into the eye are in a more confined space and less likely to migrate out of the area. Treatment can be done in one eye without affecting the other eye and the natural history of the disease is better understood allowing treatment to be started an earlier stage where less damage has occurred.

How can I be so upbeat about the future of stem cell research? The answer is that we learned so much more about the growth and differentiation of stem cells. We have learned to tag the cells we want and separate them from the soup of other cells much as you would separate pennies, quarters and dimes so that we can deal with a pure and stable product for transplantation. We understand the factors involved in cell rejection and can protect foreign cells more effectively. Last but not least, we can take a cell biopsy and grow it into the desired cell type we want for a particular individual.

Macular degeneration is the leading cause of blindness in the developed world. It’s only in the last 10 years that we’ve been able to discover specific genes associated with macular degeneration and the results have been very surprising. Most common form of macular degeneration, dry macular degeneration, is most closely associated with the gene for complement factor H, a substance involved in controlling inflammation and having nothing to do with vision itself. This was a huge surprise. For years we thought that macular degeneration was due to a defect in the photoreceptor cells (rods and cones) or the retinal pigment epithelial cells (RPE), a monolayer cells underneath the photoreceptors whose integrity seems necessary for their nutrition and survival. We’ve known for some time that the retina overlying a damaged area of RPE can become functional when transferred onto an area of intact RPE within the same eye. In animal models, RPE cells grown from embryonic stem cells or fetal tissue have been transplanted as either dissociated cells or sheets of cells with return of retinal function. Some people questioned whether this would be successful in humans because as Lucian del Priore demonstrated that in the adult human, transplanted RPE cells do not survive well because of contact with exposed collagen. Peter Coffey at University College London has overcome this by implanting the cells as a sheet on top of a piece of very thin plastic.

Even more exciting, embryonic stem cells may be unnecessary. Trans-differentiation, the process of transforming one adult cell into a different type of adult cell may obviate the need to use embryonic stem cells. Deepak Lamba has derived RPE and retinal precursor cells from adult cells using the gene modifications discovered by S. Yamanaka. Recently, Rudy Jaenisch at MIT has been able to transform fibroblasts from a rats tail into functioning neurons.

Clinical trials to treat macular degeneration are now underway by Robert Lanza at Advanced Cell Technology using disaggregated RPE cells derived from human embryonic stem cells and by Dr. Coffey using sheets of cells on plastic. Herman Klassen at UCI has gone a step further and, using neural precursor cells isolated from a human fetus has been able to demonstrate their differentiation into functioning photoreceptor cells in animals.

We are witnessing a revolution in medical treatment. For hundreds of years we had treatments based on small molecules; everything from aspirin to anticancer drugs. 20 years ago began gene therapy using viruses and now we have entered the era of cellular treatment of disease.

For me, November’s Man of the Month needs no introduction (… because he is my father). For the rest of you for whom he is not a genetic relation, here goes…

The Disruptive Women in Health Care team is pleased to introduce our November Man of the Month — Dr. Peter Ditto, Department Chair and Professor of Psychology and Social Behavior at University of California, Irvine and a leading authority on the psychology of advance medical directives and end of life decision making.

Dr. Ditto is best known for the series of studies he conducted examining key psychological assumptions underlying the effective use of advance medical directives, so much so that he was one of the few psychologists invited to participate in the 1993 Squam Lake conference convened to establish a national agenda for research on advance care planning. He is also a member of the Advisory Panel for the American Psychological Association’s Ad Hoc Committee on End-of-Life Issues.

I sat down with Dr. Ditto (who I more commonly refer to as Dad) to learn more about the psychological aspects of end of life decision making, his research on the subject and more.

You often use the Terri Schiavo case  as an example of the decision making challenges families who must make choices about the use of life-sustaining medical treatment for an incapacitated loved one face. In what ways does the Schiavo case encompass your “traditional” case? In what ways does it diverge?

In many ways, the Terri Schiavo case is not at all typical.  She was a young woman who was struck down unexpectedly in her 20’s. Most end-of-life decision making occurs with elderly people, often with a lot of advance warning that a situation is approaching where the person is going to lose decision making capacity. It is actually interesting that the cases that have most captured the public’s attention and most shaped law and policy on end-of-life decision making have involved these quite rare and unusual cases of young people left in persistent vegetative states (Schiavo, Karen Ann Quinlan, Nancy Cruzan). This is likely because these are cases where the issues are displayed most poignantly – a person who has lost the ability to speak for themselves, about whom everyone is uncertain what the incapacitated person would want done if they could speak, and where family members (and public opinion more broadly) have strong and differing opinions about what is the morally appropriate course of action.

But it is important to point out that these are exactly the problems that occur writ small – in less dramatic and less poignant forms – in homes, hospitals and hospices every day in the US. It is typically older people who have become too sick to speak for themselves, have not completed a little will or conveyed their wishes in any way to their loved ones, and this uncertainty can easily lead to family conflict because people have differing beliefs about the person’s likelihood of recovery, and bring different moral views and emotional vulnerabilities to the situation.

You say that, while many think the presence of a living will would have negated what quickly disintegrated into an ugly situation for the Schiavo and Schindler families, it is not always that simple. What steps can people take to avoid (to the extent it is possible) leaving their loved ones in a similar situation?

In many ways, my scientific work on end-of-life decision making can be seen as a psychological critique of living wills. The problem with living wills isn’t the idea – it is a wonderful and noble concept to try to honor people’s wishes near the end of life by having them record those wishes while they are still able – it is the execution. Quite simply, it is just a really difficult situation to find oneself in, and there are no simple band aids that are going to fix it all up.

I remember during the height of the Terri Schiavo controversy watching an attorney on the Today Show saying that spending 15 minutes filling out a living will would have solved the whole thing. Nothing could be further from the truth. Our research identified a whole host of problems with this idea – people often complete living wills that are very vague (“no heroic measures”), people’s preferences of life-sustaining intervention change over time as people’s health waxes and wanes, and even a quality living will doesn’t necessarily communicate wishes in a way that helps your loved ones (what we refer to as surrogate decision makers) predict your wishes any more accurate than they can without having seen that living will (could give you a paper site if you want one).

The best advice I can give is to talk to your family about your end of life medical wishes. This is especially crucial if you develop a medical condition where one possible trajectory is that it might leave you unable to communicate. I really don’t believe it is cost-effective to try to develop policy and law to encourage every 20-year-old to write a living will or take other elaborate measures like that. It is so unlikely that a Schiavo-like incident will happen to them, and even if it does, the situation they are trying to make decisions about is so inconceivably different from their current situation as a healthy 20-something, that it just isn’t worth a major societal investment to encourage that level of planning [editorial note: forget 20-year-olds -- an AP article published this week suggests that 64% of baby boomers also feel this way]. But as one gets older, and especially if future incapacitation is one possible outcome, that is the time when talking with your loved ones and your physician about your wishes for end-of-life treatment make sense, and it is a time when it all becomes psychological “real” enough to allow someone to really make reasonable wishes.

Let me also say though that completing a living will is not sufficient all by itself, but it helpful to think of it as a means rather than an end. The key is to make completing a living will the process that stimulates you to think about what you would really want – for both yourself and your loved ones – if you lost the ability to speak for yourself. And, most importantly, to make this an opportunity to talk to your loved ones – your spouse, children, whoever – and try to convey to them the core values and feelings that motivate your wishes.

Do you have any advice for families who find themselves in this situation but whose loved one did not leave a living will? Is there a precedent that should be used to guide decision-making in that case?

The advice I always give people is to simply try your best to take your own feelings out of the situation, and try to make the decision for your loved one that they would make for themselves if they were able. This is both something that I think makes good common sense, and if precisely consistent with the fundamental ethical principles that have always been held to guide end-of-life decision making.

That is, the goal of living wills and other forms of advance directives has always been to maintain an incapacitated person’s personal autonomy, their right to self-determination that is enshrined in the Constitution. But how can a person in a coma make decisions for themselves? They can’t directly, but if you make the decisions for them that they would have made for themselves, they your judgment can be substituted for theirs (hence the technical term substituted judgment) and it is as if they are making the decision for themselves.

It is a beautiful, elegant idea – especially if your substituted judgments are informed by documents or discussions completed prior to the person losing their decision making capacity – and as I said before it is terribly difficult to actually bring to fruition in real life. We are often not very good at predicting our loved ones wishes – think about the last time you totally miscalculated on a birthday or anniversary gift for your spouse – and complicated medical situations flooded with emotion are not likely to maximize the accuracy of your predictions.

But another finding from our research is that many, perhaps most people are more concerned with who makes judgments for them than in trying to micromanage the judgments that will be made. Many people say that the most important factor for them is that they want someone they trust to make judgments for them. They are happy in fact to let those people make judgments in real time, with all of the information available to them, and thus are more interested in appointing a trusted loved one as a designated surrogate rather than completing a detailed living will where they feel like they are ill-equipped to address specific and inherently probabilistic medical decisions.

This is why I think policy should be focused on encouraging opening up dialogue between physicians, patients and their loved ones – and encouraging the completion of durable powers of attorney for health care (legally appointing a surrogate/proxy) rather than long, complicated advance directive documents.  The focus should be on discussion not documents, and documents are most useful as a stimulus to dialogue.

Obviously the cost of care is a factor in any medical situation no one wants their family to become destitute as a result of paying for their care. How do you think changes to Medicare/Medicaid and long-term care [i.e. the repeal of the CLASS Act] might affect the public’s end-of-life wishes?

I will say upfront that I don’t know a lot about specific policy details, but regardless, here is what I do know.  No one wants to mix up end-of-life decisions with financial considerations. It is not about saving money, it is about allowing people to make their own decisions about prolonging their own lives versus letting go and not prolonging the process of dying. And versus someone else making that decision for them – whether it is ending their life prematurely, or the problem that most people really care about – which is continuing treatment past the point that it makes sense and leaves people suffering or losing their essential dignity. That is why end-of-life decision making works best in the context of a situation where medical care costs are irrelevant. It is only when people know they can get all the care they need, that they will be comfortable making decisions to forgo that care. It is important the people are provided the ability to get the care they need at the end-of-life, and that physicians are incentivized to discuss end-of-life concerns issues with their patients – not to counsel them to check out early, but to help that make the end-of-life as dignified and free of unnecessary suffering as it can be.

The ironic thing about all this is that virtually every analysis shows that the key problem in end-of-life care is overly aggressive treatment that has little chance of success and that the patients likely would not want if we could ask them. So if people are allowed to make their own decisions, and we invest resources in helping them do that in the most effective possible way, it actually would cut the exorbitant costs of end-of-life care in a natural, humane way that honors every American’s right to make their own choices about their own lives.

Thank you Dr. Ditto, we appreciate you taking the time to discuss this important element of the End of Life with us.

What do you think about living wills and advance directives? Do you and/or your loved ones have them? Do you know what your loved ones would want, should they [heaven forbid] be unable to speak for themselves? Tell us in the comment section below!

An increasing number of kids need some sort of special care: dietary management, medication management and ‘rescue’ strategies for medical crises and allergies. Some of these conditions are life-threatening and improper management can be deadly.

It’s hard enough to make modifications, even at home. Imagine what it’s like at school. If you don’t have a child in school, you may not realize how incapable schools are of meeting special needs. Worse yet, many schools have zero tolerance policies where medications are concerned. This means that even if a child is capable of managing their own medications, they may not have ready access to them.

So what happens when a school has a zero tolerance policy? I’ll never forget the experience of a youngster, who at the end of a focus group we conducted to explore asthma issues with poor children in Atlanta, cried. The tears came because the focus group facilitator hugged him in thanks for giving up his Saturday morning cartoons to come. Asked why, he told us that because he had to go to the nurse’s office to get his medication other kids thought he had HIV and so would not play with him. No one, he said, would touch him. My heart aches for that boy.

It aches and rages for the family whose 11-year old son died for lack of the inhaler he needed for his asthma. Though the school had a policy of making exceptions for inhalers, his parents had not been informed, the inhaler was in the admistrator’s office and the delays in medication administration cost his life. I doubt the $2.2 million negligence award was sufficient to ease his Mom’s suffering.

School nurse programs were already limited and now suffer from additional cuts. The State of Ohio, recognizing that others in schools (usually secretaries) might have to administer medications are now training non-nursing staff to administer them: injections of insulin for children with diabetes and rectal valium for children with seizures. I cringe at the thought and even more so when I read that those non-nurses administering medications are making mistakes even in training situations, where the pressure and the stakes are low.

By way of comparison, contrast that with hospital-based nursing care. For a nurse in a children’s hospital to administer insulin, one nurse draws the syringe and a second nurse must confirm it is correct. Both sign the records indicating they followed this protocol.

Nearly 6% of kids in school receive medication every school day. Ohio has made a step in a better direction, and certainly is more enlightened than some schools administrations who assert that a kid having an asthma attack on the playground should just ‘run to the Principal’s office.’ (What, are they nuts! Kids who can’t breathe can’t run!

Surely we can do better than this for kids…and their parents or caregivers and better staff schools with nurses qualified to help manage the growing number of chronic conditions that come to school with the kids every day.

Please take a look at the transcripts for the Alliance for Health Reform briefings below. The webcasts and podcasts from these briefings are also available, brought to you courtesy of the Kaiser Family Foundation.

The Innovation Center: How Much Can It Improve Quality
and Reduce Costs – and How Quickly?

The new Center for Medicare and Medicaid Innovation seeks to test innovative health care payment and service delivery models that can potentially enhance quality of care for beneficiaries while reducing costs. How is the center planning to administer its $10 billion in funding? What early projects is the center undertaking? These questions and others were addressed at this briefing cosponsored by The Commonwealth Fund.

Click here for the transcript, webcast and podcast, as well as individual speaker videos and resource materials, including speakers’ PowerPoint presentations.

Preventing Chronic Disease: The New Public Health

The nation is facing an epidemic of chronic disease. To try to stem the tide, many efforts are underway in local communities to support healthier lifestyles and help people make long-lasting and sustainable changes that can reduce their risk for chronic diseases. Can this focus on the new public health be sustained in light of budget constraints on the federal, state, and local levels? How are resources in the $15 billion Public Health and Prevention fund, set up under the ACA, being deployed? This briefing, cosponsored by the Robert Wood Johnson Foundation, addressed these questions and more.

Click here for the transcript, webcast and podcast, as well as individual speaker videos and resource materials, including speakers’ PowerPoint presentations.

Caring for People Covered by Both Medicare and Medicaid:
A Primer on Dually Eligible Beneficiaries

This was an introductory session designed to inform the staff of new members of Congress both in Washington and in district or state offices about the people who receive benefits from both the Medicaid and Medicare programs (often called “dual eligibles”). Who is dually eligible for Medicare and Medicaid? What are the characteristics and needs of this population? How do Medicaid and Medicare coordinate payment and care for this population? What federal and state barriers complicate these efforts? The briefing, cosponsored by the Kaiser Family Foundation’s Commission on Medicaid and the Uninsured, answered these and other questions.

Click here for the transcript, webcast and podcast, as well as individual speaker videos and resource materials, including speakers’ PowerPoint presentations.

Keeping Coverage Continuous: Smoothing the Path
Between Medicaid and the Exchange

A key design challenge for those tasked with implementing the health reform law is how to manage this “churning” phenomenon — when people cycle in and out of public programs as their income varies — so that care is not interrupted. What approaches are states and the federal government taking to minimize the disruption from churning? Will people be able to keep their provider as they move across the Medicaid – exchange divide? How can private insurers and Medicaid overcome possible technical and cultural barriers to a cooperative working relationship? What issues must states consider as they establish “no wrong door” eligibility determination processes for Medicaid, CHIP and health insurance subsidies? This briefing, cosponsored by The Commonwealth Fund, answered these questions and more.

Click here for the transcript, webcast and podcast, as well as individual speaker videos and resource materials, including speakers’ PowerPoint presentations.

The Alliance for Health Reform is a nonpartisan, not-for-profit health policy education group. We are committed to helping journalists, elected officials and other shapers of public opinion understand the roots of the nation’s health care problems and the trade-offs posed by various proposals for change. Our aim is quality, affordable health coverage for all in the U.S., although we do not lobby or take positions on legislation. Sen. Jay Rockefeller (D-W.Va.) is our founder and honorary chairman; Robert Graham, MD, of George Washington University, is our board chairman.

If you want to refresh your memory about it, you can check it out at http://www.disruptivewomen.net/2011/02/07/chocolate-a-new-secret-weapon-for-health-care/#comments.

Now, comes a study from the British Medical Journal of findings presented at the European Society of Cardiology Congress recently in Paris that might explain (at least in part) why chocolate and satisfaction might be related.

Perhaps people in higher chocolate-consumption countries are happier with their health care system because they don’t use it. I wonder?

According to the article, high levels of chocolate consumption appear to be associated with a 37% reduction in heart disease and a 29% reduction in stroke. Both are major causes of admission to hospitals in this counry.

Frankly, I’m pretty happy about the US health care system when I don’t have to use it. Now I know a European secret…eat more chocolate and stay out of the hospital. I can’t think of a more palatable form of prevention.

Due respect to Walsh, but yesterday CNN’s The Chart blog presented what I consider to be a much more likely explanation for this phenomenon, and many more, when it comes to gender roles in today’s society. Turns out, it’s not society or culture we should be blaming – but evolutionary biology (Freud, you rascal!) – men today have lower testosterone levels than they used to (a trend that has been confirmed by two major studies)! And that’s not all – potentially lower sperm counts, rising prevalence of male sex organ malformations, and potentially even a decline in the percentage of male babies born vs. female! Check out the blog post here for all the details.

And ladies, take heart, it’s not you  – it’s science!

By Saundra Pelletier. In 1965, Griswold v. Connecticut gave a married woman the right to use birth control to prevent or delay pregnancy as she saw fit. This guarantee of a basic human right led to other reforms that allowed millions more American women to decide the direction of their own reproductive lives.  This summer, we are proud to see another key reform go through: starting next year, the Affordable Care Act will allow even more women in the United States to be in charge of their own health by requiring new health plans to provide free birth control without a co-payment. These are hard-fought wins for women’s health and for women’s rights of which we can all be proud, but sadly the ability of a woman to choose when and whether to become pregnant is far from assured in other parts of the world.

Pause for a moment and imagine you’re not American, but from Sub-Saharan Africa – Ethiopia for example. You are 20 years old and have four children – the first of which you had when you were 15 and newly married. You’re worried about becoming pregnant again. You tried to get birth control once, but arrived at the clinic only to find the shelves bare and no way to access any form of birth control.  The thought of another pregnancy, whether by a husband who won’t take no for an answer, or by a stranger who might force his way upon you while making your way to fetch water for the family is overwhelming. You’re not in great health, and another pregnancy would take its toll on your weakened body. The chances are high that you might not survive pregnancy or labor to be able to take care of your family.

Globally, 215 million women would like to be able to prevent or delay pregnancy, but do not have access to the supplies that would allow them to take control of their lives. As American women, we know from our own experience that the ability to make our own fertility decisions has made an immeasurable impact on our own lives. For women in the developing world, access to reproductive health supplies would save lives and improve health, as well as the economic and social well-being of families and communities.

Consider the staggering number that every single day, 1,000 women die due to pregnancy-related complications. Access to contraceptive supplies would mean that unintended pregnancies would drop by more than 70 percent every year. 150,000 maternal deaths would be avoided every year. And 600,000 children would not lose the love and care of their mothers.

Why is it that a private sector product like a Coca-Cola or a mobile phone can get to ‘customers’ yet much-needed health care information and products are beyond reach? This question has perplexed the global health community for decades.

WomanCare Global was founded in 2009 to address the profound problem of maternal mortality that has challenged the reproductive health field. The path is very clear and one word sums up the problem and the solution – ACCESS.  Our “hybrid” model is trying something new – a way of offering women hope because the emphasis is on access to affordable quality products for the women who need them most.  WomanCare Global recognizes the many challenges facing the distribution of healthcare technologies in underserved markets. All too often, pharmaceutical and device manufacturers decide not to invest in low resource settings, limiting product availability in much of the developing world. Additionally, supply-chain gaps keep products from reaching healthcare facilities, providers, and the women they serve.

By identifying innovative reproductive healthcare technologies and utilizing existing distribution channels, WomanCare Global promotes sustainable access to these critical products.

Family planning is one of the most important, cost-effective interventions available in the world today. Every woman, no matter where she lives, deserves access to the lifeline of information and affordable reproductive health products.

Date:

July 22, 2011

Time:

8:30am – 4:00pm

Location:

Pew Charitable Trust Conference Center
901 E Street, NW
Washington, DC 20004

It is estimated that women make up about 14 percent of the armed services and of the roughly 2.2 million troops who have served in Iraq and Afghanistan, more than 255,000 have been women. They are at-risk for a variety of serious and intriguing mental and physical conditions that are not well understood.

The 2011 SWHR X-Conference will highlight the sex-differences in a number of conditions that affect female veterans who have been exposed to military combat. Topics will include Post-Traumatic Stress Syndrome (PTSD), Depression, the Musculoskeletal System, Urogenital Issues, and Traumatic Brain Injury (TBI). The nature of the conference will be translational and will feature talks from basic scientists, as well as military health professionals. Panelists will discuss the biological basis for the specific sex-based differences, and then describe the clinical features of these conditions to a diverse audience of scientists, policy makers, practitioners from both within and outside the Veterans Administration, and the media.

Conference highlights include:

• the state of the art on military combat exposure for female veterans,
• the available data on the biological and clinical features of selected health problems,
• a dialogue for designing basic and clinical research studies to address the above challenges.

Click Here to View the Agenda

To Register: Registration fee for the conference is $35 per person, $20 for students. SWHR, in partnership with the National Association of Nurse Practitioners in Women’s Health (NPWH), is offering 5 CE credits, including 1 pharmacology credit, for attending this conference. The fee for receiving CE credit is an additional $100. Click here for more information.

There is an equally accepted convention that says that “health care” is correct when there is reference to a provider’s action, and “healthcare” is used when it is an adjective to modify another noun or verb—healthcare system or healthcare marketing—for example. And, there are many sites that shift, very consistently, between these two approaches depending on the sentence structure.  

I can live with 2 different literary conventions … but here is what is keeping me up at night and: literary styles change. 

“Airline” used to be “air line” and “website” was formerly “web site.” Similarly, there is pervasive evidence that the “health care” is turning into “healthcare.” In my own cursory review of sites that I respect–WebMD.com, Kaiser Family Foundation, the Institute of Medicine, I found that “health care” and “healthcare” are used interchangeably without grammatical rhyme or reason.

So, why do I care? And, why should you care that the adjective, “healthcare,” is well on its way to becoming a noun or a verb? In fashion, style changes drive revenue. On Twitter, eliminating the space creates capacity for one more character. However, in health care, eliminating the space and turning two words into one, will have a negative impact on people, their well-being, and thereby, worsen an already deteriorating system.

Take a moment to do an experiment:

1)    Write the following sentence on a piece of paper: Healthcare is important.

2)    Show the paper to a few different people, and ask them to explain what the sentence is referring to when it says “healthcare.” Listen for the meaning they ascribe to the word “healthcare.” What is the first thing they say? Most likely, they refer to insurance, access, costs, and/or health reform.  Do any even refer to the quality of care that they receive from doctors or other care providers? Do they refer to the importance of their own lifestyle behaviors? Probably not. In my experiment en route from Minneapolis to San Diego yesterday, with an n=5, only XX said anything about care, and only as an after thought. 

The explanation is pretty straightforward: 
Language triggers images.
Images stimulate thoughts.
Thoughts motivate behavior. 

The word “healthcare” conjures up images about the system—not doctors or nurses; not medications; not nutritious foods or exercise. As a result, a gradual, seemingly innocent, linguistic transition to ”healthcare” may slowly erase our mental images of wellness and fuel an unconscious passivity among patients and clinicians regarding their personal accountability as individuals and professionals. The result: further deterioration in the nation’s health. 

In the middle of writing this post, I realized that I am contributing to this unfortunate, literary transition. The tagline for Georgiou Consulting is “Healthcare…Simply.” I am embarrassed to admit that when I went through a branding process and web site design in 2009, I worried about the font and the colors and didn’t even think about the broader implications of using one word versus two. So, I will change it (Ka-ching!) and, consistently change how I write. 

So, what can you do? 

Take responsibility for the word(s) that you use in memos, letters, emails, tweets and other content that you author. Hit the space bar between “health” and “care.” Each time you do, you’ll add value to someone’s life by triggering an image … stimulating a thought…and motivating a behavior…. that has the potential to make a positive difference.  

Originally posted on Archelle on Health on May 11th.

Few fields have the potential to evolve more dramatically through disruptive, exponential technologies than healthcare. Low cost genomic sequencing and proteomics, ever-faster and higher-resolution imaging, artificial intelligence, telemedicine, stem cells, robotic surgery, smaller and more capable implantable and wearable devices, ubiquitous mobile applications, nanotechnology and synthetic biology–these and other game-changing technologies and innovations have tremendous implications for medicine, healthcare and the biomedical industry in the decade ahead, including the potential enablement of better, more accessible care at lower costs.

The five-day, intensive FutureMed program includes lectures, workshops and site visits that are led by notable faculty from the fields of medicine, biotechnology and innovation. CME credit is available for clinicians. In attendance will be world-class innovators and thought-leading faculty across multiple disciplines.

Some of the FutureMed faculty include:

• Peter Diamandis MD, Chairman of the X-PRIZE and co-founder of Singularity University
• Tim O’Reilly, Founder and CEO of O’Reilly Media
• Dean Ornish MD, Founder and President, Preventative Medicine Research Institute
• Thomas Goetz MPH, Executive Editor WIRED, Author of ‘The Decision Tree’
• Dan Barry MD PhD, 3 time Space Shuttle NASA Astronaut and Roboticist
• Catherine Mohr MD, Director of Medical Research, Intuitive Surgical
• David Ewing Duncan, Author of ‘Experimental Man,’ and the ‘Personalized Medicine Manifesto’
• Randy Scott PhD, Founder and Chairman of Genomic Health
• Roni Zeiger MD, Chief Health Strategist, Google
• Christopher Longhurst MD, Chief Information Officer for Packard Children’s Hospital, Stanford Medical School
• Michael Gillam MD, Director of the Microsoft Medical Media at Microsoft Health
• Allan May, CEO of Life Sciences Angels
• Michael West PhD, Founder of Geron and BioTime Pharmaceuticals

A full list of faculty is on the FutureMed web site.

Core tracks include those which will explore the exponential trends in Information & Data-driven and Internet-Enabled Health Care, Genomics and Personalized Medicine, Regenerative Medicine, Robotics & Future Interventional Approaches, NeuroMedicine, Device & Drug Development, and Entrepreneurship.

Click here for more information or to register. Follow FutureMed on Twitter @futuremedtech and at facebook.com/futuremed.

By Anu Acharya. With careful due diligence, help from financiers and a keen eye, even small companies can grow through mergers and acquisitions.

The word ‘merger’ often is associated with a big company buying a smaller one or two large companies coming together. But it is not only large companies that can succeed through acquisitions—even startups can use mergers as an effective way to grow their businesses. As a small team leading the startup Ocimum Biosolutions, based in Hyderabad, India, a decade ago, my colleagues and I could have opted to grow the company internally. But early on, we decided to take the path of mergers and acquisitions (M&As) to expand our company.

We had difficult choices to make as our business grew, and we learned invaluable lessons. Here, I share some of my experience and show how Ocimum evolved from a small company into a globally integrated genomics firm.

Ocimum’s long evolution

Ocimum Biosolutions currently offers informatics solutions, wet lab genomic services and products for sample storage, processing and visualization of gene expression data, sequence data organization, small interfering RNA (siRNA) design, genome analysis, gene patterns, in silico gene optimization and customized biological databases. But a decade ago when Ocimum was just getting started, biological research had not yet comprehensively embraced ‘omics-based approaches, and our business was based on a different model.

We started by collaborating with pharmaceutical and biotech research organizations, solving their challenges and increasing the productivity of their R&D efforts through the application of our in-house informatics expertise. While doing this, we unearthed several places in the R&D value chain that could be streamlined with informatics, but in our first few years, we grew organically. We maintained a positive cash flow by licensing bioinformatics and enterprise software solutions like laboratory information management systems and by providing bioinformatics training.

Within a few years, we had built a thriving business with a steady pipeline. Money was coming in, and it would have been easy to be content with the direction of the company. However, Ocimum aspired to be more than a bioinformatics company—we wanted to be a ‘lab next door’ that could provide a researcher with services across the spectrum in a timely and cost-effective manner. To do this, we knew we would have to break out of our comfort zone and expand beyond the perceived limitations of our small team and startup company. We looked at our goals—a strong presence in the US, expansion of our portfolio of services to include biomarker discovery, and a customer base in Europe—and realized growth through acquiring assets seemed like a great way to build a large, scalable and sustainable company, so long as the pieces fit with our proprietary Research-as-a-Service (RaaS) business model. Ultimately, we achieved these goals through a combination of organic growth and three mergers (See table).

When practicality conflicts with growth

Around 2005, closed microarray platforms and providers who lacked platform openness were the norm. Customers wanted customized and affordable microarray solutions, from study design to complete analysis with varying degrees of complexity, and we saw a need. Ocimum already had expertise in informatics solutions, and we thought we could acquire an open microarray technology platform, enabling us to access new customers and work more closely with existing ones.

Although we had a small lab in Indianapolis, we were headquartered in India, and an overseas acquisition seemed like a mammoth task to us. It did not at first seem practical; indeed, CEOs of biotech startups often experience the same perception that their business aims are not possible to put into practice. However, a tenet of business is to seize an opportunity when it arises; in Ocimum’s case, our first merger was almost handed to us and that helped convince our team we could do it. We had previously come close to signing a contract with MWG Biotech, of Ebersberg, Germany, to bring it on as a customer in 2004; but when the company began to struggle and approached us about a possible acquisition of their Genomic Diagnosis (GD) division, we decided to acquire the business.

Instincts and due diligence

Once we started thinking about a merger, we knew MWG’s technology platform would help us, and so would its impressive list of clients in Europe and the US. This brings up an interesting point about acquisitions: due diligence.

In this case, we were familiar with the company because we had been in contract talks. But we used investment bankers and lawyers to conduct our due diligence, and also consulted our advisors and knowledgeable family members. Because the asset was being sold in an as-is condition with no warranties, and because their GD division had been shut down for six months before we acquired it, we needed to get a firm grip on its value, which we then stacked up against the risk. On one hand the merger had substantial issues—this was a business that had basically failed—but on the other hand, we saw that we had a chance to dramatically increase the size and capacity of Ocimum. The biggest challenge facing us was unhappy MWG customers. They had no idea what had happened to their projects as MWG faltered before our purchase, and that taught me a lesson: unhappy customers can be made happy if you engage them. The ones who did not communicate with us (though we tried) were lost forever. If the company you are buying has current customers, make sure you reach out to them at the earliest possible moment.

When the MWG acquisition closed, we went looking for another target company, this time to integrate vertically—we wanted a firm that produced oligonucleotides. We found a likely target in Germany, but talks did not progress much before falling apart because the founder was unsure (that’s rather common), and he also had a health problem and that caused the deal to fall through. Another lesson learned: we had already made the announcement to our workforce that this deal was going ahead. Having to retract that announcement was a challenge in managing both internal communications and morale.

Around that time, the International Finance Corporation (the private equity arm of the World Bank) was looking to invest in Ocimum under the condition that we acquire a European company working in oligonucleotides. So we initiated the process of acquiring major assets of Isogen Life Sciences, based in Ijsselstein, The Netherlands. Due diligence was far more comprehensive here than with MWG’s GD business. We went through a complete financial, business and legal review. To handle this, we charted the entire process through our internal team in addition to utilizing our usual bankers and lawyers.

Our third acquisition required perhaps the most effort regarding due diligence. Gene Logic, a company based in Maryland, had not only a database of disease-focused biomarker discovery and toxicogenomic suites it had built through dedicated microarray programs, but also a fledgling services division. The database was difficult to replicate for competitors, and when Gene Logic decided to sell their genomic assets to retain focus on their drug-repositioning efforts, we saw a perfect opportunity.

Besides the regular diligences of legal, finance and operations teams, we spent a fair amount of time with Gene Logic employees and talked to external consultants in hopes of designing an optimal integration strategy, which meant that I became more personally involved in the process. As CEO, I wanted to ensure that we did both a business diligence and an analysis on how this would impact our overall strategy as a company. This was the most stringent of all our merger-related diligences, but once complete, Gene Logic slipped into our business smoothly.

The costs involved

The acquisition of MWG’s open microarray platform enabled Ocimum to provide a new degree of integration and flexibility to the genomics community, but nothing of value ever comes for free. However, we were able to finish the transaction without getting any private equity or venture money—we completed the deal with our internal funds and a small amount of bank debt. This meant the acquisition made an impact on our business without undue expense.

Apart from the acquisitions I have mentioned, the Ocimum management team has looked at other companies with cash on their books and more stable businesses. But those not only had higher acquisition costs but also appeared to be poorer fits with us. With MWG’s GD business, we knew exactly what we were getting: access to Europe and a technology we would not have to extensively develop.

For our other two acquisitions, we had the added pressure of simultaneously raising a fresh round of funding to go along with closing the deal, which can be a Herculean task. It made those deals harder to pull off, but we were growing, had bigger needs and thus scouted larger targets.

You’ll also need to consider another kind of cost, beyond purchase price, when contemplating a merger: running costs. You’ll need to make sure you can contain running costs of adding the new acquisition by finding synergies and increasing revenues. You should focus on sales force synergies (if either company has a product or service), general and administrative savings and operational efficiencies that can be derived from a merger. Cutting these can help you keep all the benefits of the new acquisition but stunt the cost of running a company now made larger.

Until the end

M&As are complicated to initiate, negotiate and sign. They involve a lot of planning and investigating, as well as a time commitment from founders and management—all for something that could potentially hurt your business if it does not go as foreseen.

Yet mergers have to be treated from the beginning like they are a reality, even if they are not finally completed. Still, it serves as a reminder that entrepreneurs need to take risks and step forward into the unknown sometimes. If it does not work out, have faith that another fork will appear in the road. It usually does, sooner or later.

It’s a sad fact of business that not all mergers will be successful. You certainly plan for them to be—you’d never start down that path if you didn’t—but there are things you will not know until the deal is closed. For example, Ocimum acquired Isogen in 2006 in part for its biomolecules division, which we planned to use to expand our European presence and sell oligonucleotides to research labs. The idea was to get a foot in the door and to sell other informatics and lab services, but we ran into trouble with integration due to cultural issues, cost overruns and intense competition that required a greater investment than we originally anticipated. Even so, this merger helped us kick-start our new diagnostics division, which we now pursue in India. Through it, we’ve developed an influenza virus H1N1 kit, a tuberculosis spoligotyping kit (based on polymerase chain reaction amplification of a highly polymorphic direct repeat locus in the Mycobacterium tuberculosis genome) and many more that are in the pipeline.

In each of the acquisitions we strived to retain some of the existing culture of the acquired company while also implementing a global culture that allowed us to function as one company. As part of our due diligence, we always checked if the target company had a culture similar to ours to begin with. In some cases, we made mistakes, and it turned out that the time we spent managing Isogen far outweighed the revenue and profit we saw from it, so we eventually decided to discontinue operations in The Netherlands. That acquisition did not work out as planned.

But each acquisition was a learning experience, and by our third M&A, the process was smoother. Acquiring Gene Logic came with considerable challenges. We had to determine operational efficiency and cost standardization while also integrating Gene Logic into our overall business model and diversifying and customizing their capabilities to make solutions affordable to organizations other than big pharmas and biotechs. Even so, integration was a success within a short span of time because of the lessons we learned in previous acquisitions. Gene Logic 2.0 is now very well positioned to carry forward the genomic legacy it had meticulously built since its founding in the late 1990s.

Conclusions

There is a final benefit to mergers: positive change. In our first acquisition, one of the benefits that we greatly underestimated was the buzz created by the MWG acquisition, which led to instant name recognition and customer access worldwide for Ocimum. We received a similar boost when we incorporated Gene Logic into our business; indeed, we retained Gene Logic’s name to capitalize on the genomics goodwill associated with the brand.

Amalgamation of disparate entities—be it MWG, Isogen or Gene Logic—is possible only because of complementary competencies and customer bases. Ocimum has graduated from being a small bioinformatics company in India to being a leading, integrated, global, one-stop solution provider for genomics. The same path could have been a recipe for disaster in a different geography or a different business model, but for us the three acquisitions were exactly what we needed. Thus, acquisitions can prove to be a very effective business strategy. Can you afford to miss out on them?

While genes are our predisposition, they are not our Fate: good news for every human being. Furthermore, he said that, “healthcare needs more connection and community. It’s as important as food and water.” He and other researchers have learned that a person’s greater social connectedness (friends, family, community) contributes to better health. People who are lonely and depressed have 3 to 7 times greater mortality, Ornish told us. The largest unmet need is for intimacy and connection.

While Dr. Ornish’s research continues to demonstrate the power of lifestyle changes on health and longer, more joyful living, sponsors of health plans are now getting into a next generation of wellness and prevention in the context of value-based benefit design. With health premium increases that now have a family of four’s coverage indexed at nearly $20,000 per year based on the Milliman Medical Index, fewer employers are confident they’ll be able to cover employee health benefits a decade from now as the chart’s declining red line illustrates.

Thus, employers in 2011 are looking to link benefits with health and productivity, based on the Towers Watson and National Business Group on Health’s survey  into employer-based benefits in the post-reform era. While companies will continue to offset increasing health costs to employees (with a 45% increase in employees’ share of health costs since 2006), they’re also using incentives more aggressively to motivate lifestyle behavior changes in a new-and-improved approach to wellness and prevention.

Employers’ priorities for worker health and wellness are first, to control costs; but second, to address emerging health risks and provide incentive programs to improve employee health and wellness, found by Towers Watson in last year’s report, Workforce Health Strategies. Addressing workers’ poor health habits, though, is the #1 challenge employers say they face to maintaining affordable health benefit cover, Towers says in the post-reform poll. So they’re raising the bar on wellness incentives.

That’s the ‘supply side’ on wellness. What about consumers’ demand side — that is, will they indeed engage with their health and buy into lifestyle changes? Well, “buy into” may be the right phrase here, because employee’s contribution trends for health have hockey-sticked up from 2009, according to Aon Hewitt quoted in a Moody’s report on benefit plan changes from February 2011. Aon calculated that employees contributed $2,635 to average monthly premiums, deductibles, and out-of-pocket maximums in 2009; this increased to $4,149 in 2010, a 58% increase in one year.

In 2011, the value-based benefit design gurus are working hard to structure incentives that motivate workers to do the right thing by their health.

Health Populi’s Hot Points:  It took Medicare 17 years to approve payment for Dr. Ornish’s program, which has hard data proving how to reverse heart disease through lifestyle — not via statins or stenting. This time lapse is not good news for either medical innovation, health economics, or peoples’ quality of life.

Will health benefit designers incorporate the learnings of Dr. Dean Ornish — that health is as much about social connectedness and joy as about picking the healthiest foods off of the spectrum of food choices and walking at least three times a week for 30 minutes? These psycho-social aspects have been a missing link in the health benefits world. Let’s hope it won’t take another 17 years for commercial health plans and employers to bundle in these important aspects into workers’ health benefits.

Originally posted on Health Populi on March 25th.

Some people called this a ‘nocebo’ effect. The Washington Post called it the ‘evil twin’ of the ‘placebo’ effect, which most everyone knows by now is a treatment that produces a positive effect for patients even when it shouldn’t because is isn’t real.

Nocebos, like placebos, are ‘self fulfilling’ prophesies at work. Apparently, the brain (and body) cooperates with the deception.

A study just published in Science Translational Medicine takes this to new levels.

Healthy people agreed to participate in a pain experiment. Heat applied to their leg caused pain and a baseline of their tolerance determined. On a scale of 0-100, the average pain rating was 66. Placed in an MRI with an IV inserted, they were administered a powerful pain-relieving drug…but not told so. Pain levels dropped to 55, so apparently the drug had some effect. That was Stage One of the study.

Stage Two started when the research subjects were told the drug was now being administered. Average pain dropped to 39, mmmmmm.

Stage Three came next. Even though the drug was administered still, the researchers lied… subjects were told it was stopped. Average pain intensity rose to 64. Very close to the baseline. Wow. Tell the person – the patient – there is no help on board and the nocebo takes over.

These were not just subjective reports. The MRI’s confirmed that the brain’s own pain networks responded in ways that matched the subjective ratings.

Change the expectations…change the response.

So what does this have to do with politics and media? Plenty maybe. You decide.

I’ve been thinking about this for a long time. Here’s why: Long ago and far away, I trained for the Olympics. My sport was Karate. There’s more.

In a training accident, a sparring partner kicked me in the head, bones in the left side of my face were fractured and reconstructed. After successful surgery, for nearly six months I spent the first hour of every morning in a dental chair to get the refining, pain-relieving work done. 

How might other patients be like me?

What if I had not liked my dentist? What if I had not trusted him?  Could I have gotten up every morning and made the drive to see him? Would I have shown-up? Or not? Cancelled my appointments? Not been adherent to the regimen? Walked away angry and disappointed? Litigious?

I can’t even remember his name today, except he was a really nice, funny, skilled, terrific guy. Eventually there was no more pain. I went on my way.

Sometimes, as I watch the anti-healer drumbeat from politicians and the media (old and new) I wonder about other people who need help.

What would it be like to be admitted to the hospital and believe that the surgeons, nurses or hospitalists there were uncaring, incompetent and likely to cause my death, not my recovery?

What would it be like to have a chronic condition and believe that my doctor had no interest in me and my health but only her own selfish interests and income? That she lacked the intelligence or ethics to stave off the influences of the many forces that make it hard to put my interests first? To believe that a pizza for lunch would influence her choice of therapeutic option?

What would it be like to get up every morning to take a medicine and believe that the company who discovered and developed it employed people only in it for the money? And that it was probably poison to boot, likely to cause bad – even fatal – side effects?

While those of us who are patients and those of us who are healers are trying to make healing  happen it seems to me there are others whose interests are not about healing.

It seems to me there are those - politicians – with interests to drive a wedge between patients and their healers in order to get media attention. It makes for flashy hearings.

Likewise it is in the interest of the media to drive that wedge to sell news.

You decide. For yourself. For those you love.

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.

Just to be clear: We shouldn’t judge her on whether or not she actually loses weight. The reality is that Benjamin is unlikely to ever achieve a normal BMI just like Obama is likely to “fall off the wagon” within 6-12 months, But, she should walk the talk and face the facts. No excuses. No rationalizing.

Too personal? Not anyone’s business? Am I being too harsh? Clearly an opinion some of you may have right now. Okay…regardless of whether she conquers her own weight problem or talks about, she should at least be straightforward with the public about the health risks associated with obesity.

During Benjamin’s confirmation hearings, she said, “being healthy and being fit is not about a dress size. It’s about how fit you are at that moment in time.” And, in a January 7, 2011 interview in the NYT Magazine, Benjamin said, “My thought is that people should be healthy and be fit at whatever size they are.”

Translation for the American public: “It okay to be fat. The Surgeon General said so.”

Benjamin’s position is supported by data that shows that cardiorespiratory fitness (defined as exercise capacity) is a strong and independent predictor of cardiovascular disease mortality and may mitigate the increased risk of death associated with obesity. In other words, she is promoting the perspective that overweight people who are “fit” may be healthier than those who are thin but sedentary. 

Don’t get too excited and start eating more Twinkies. This unbalanced view ignores other well-documented studies showing that weight, and particularly abdominal girth, is an independent risk factor for cardiovascular disease. In addition, do I need to remind you that excess weight is associated with a multitude of other conditions including sleep apnea, infertility, arthritis, depression anxiety, and certain cancers?  Less commonly known is that obesity can lead to non-alcoholic fatty liver disease–an asymptomatic condition that can lead to liver fibrosis or cirrhosis.   In children, obesity contributes to poor academic performance, bullying and low self-esteem. The list goes on and on.

So, while getting fit is associated with reducing some health risks, failing to tackle the fat problem is linked to many more.

No, you can’t be obese and healthy just like you can’t be a smoker and be healthy. The Surgeon General has a responsibility to educate Americans based on evidence-based medicine rather than politically correct messages.  And, while every public figure deserves their privacy, she should take a lesson from her boss and stop dodging the issue.

Dr. Benjamin, your  “prescription” to Americans is delivering a dangerous message. America..size matters. 

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 Robin Strongin. We, as a nation, have made progress and I believe Dr. King would be proud.  But our work is far from complete–particularly where health care is concerned.  Another doctor, Dr. John M. Eisenberg, a physician of tremendous stature whose life was also tragically cut short (not by an assassin’s bullet but by brain cancer) was equally passionate about the dignity of life and justice for all Americans.   Dr. Eisenberg, who among other things, served as the Director of the Agency for Health Care Policy and Research (as AHRQ was known back in the day), cared deeply about access to and the integrity of health care for all Americans– regardless of skin color.

Eleven years ago, on January 14, 2000, Dr. Eisenberg gave what is, in my opinion, a brilliant speech to the employees of the Department of Health and Human Services.  As with the past two years I want to share his words with all of you today — as a reminder of how far we’ve come, and how far we still have to go.

BIRTHDAY OBSERVANCE OF DR. MARTIN LUTHER KING, JR.: REMEMBER! CELEBRATE! ACT! A DAY ON, NOT A DAY OFF!

When I was invited to welcome you to the Department of Health and Human Service’s 26th observance of Martin Luther King Jr.’s birthday, my first thought was about how honored I was to be asked.  My second thought was about what Martin Luther King’s birth could mean to a rebirth of health care in this country.  Few have had as much impact upon American consciousness.

But what did Martin Luther King think about health care?

My colleagues and I searched through his writings and his speeches, and realized that he didn’t give speeches about health care.  Martin Luther King Jr. was confronting the basic nature of American society.  He had mountains to move–and mountaintops to climb–for this country so that today we can address the issues of high quality health care for all Americans.

If Dr. King were alive today he’d be 71 years old.  He’d be eligible for Medicare.  Like many 71-year olds, he might be dealing with a chronic medical condition–maybe arthritis, or hypertension, or diabetes.  What would he think of the health care system we have today?  What would he think of the medical care he might receive?  And what advice would he be giving the Department of Health and Human Services?

No, Dr. King didn’t give many speeches about health care.  But like the rest of society, health care had to change too.

When I was a teenager in Memphis, before the Medicare program was passed, the Baptist Hospital was the biggest in town, and the proudest of the care it gave.  But if you were African American in Memphis and you went to the Baptist Hospital, you’d go in through a back entrance.  And you’d go to a segregated ward, where you would be in a big room with about 15 or 20 other people.  And your doctor, if he was black, wold not have privileges on staff.  And the same would have been true for Dr. King in Montgomery or in Atlanta.

Dr. Vanessa Gamble, who is the new director of minority afairs at the Association of American Medical Colleges here in Washington, has documented the incredibly important role that Medicare and Medicaid played in helping to desegregate hospitals.  Medicare was a lever that lifted equity and equality in hospitals.  In 1965, our Department issued regulations madating that hospitals had to be in compliance with the Civil Rights Act–which had been passed just the year before–in order to be eligible for Federal assistance or to participate in any federally assisted program.  The passage of Medicare and Medicaid legislation that year made every hospital a potential recipient of federal funds, and therefore obligated every hospital to comply with civil rights legislation if they wanted to get paid.

The law changed, but practice was slower.

When I was a medical student in St. Louis, at Barnes Hospital around 1970, researchers asked why the hospital still seemed to be segregated.  Why?  Because clerks in the admissions office–both black and white–were so accustomed to the old ways that they continued to admit the races to their old units.  The law had changed, but racial stereotypes had remained.  Racist practices were illegal, but racism was institutionalized, and the seeds of racism grew into practices that amounted to discrimination.

I ask you, is it any different today, 31 years after Dr. King was shot in my hometown, and we grieved over the loss of a great American?  Is it different 31 years after I was ashamed of the symbol that my hometown had become, when all that Dr. King wanted was to put into practice the placards that the Memphis sanitation workers wore, that read, “I am a man”?

Today, research shows that African Americans are one-third less likely to have coronary bypass surgery than whites with the same conditions.  Why? And today, African Americans with HIV are less likely to receive antiviral treatment.  Why do these disparities occur?

The easy answer is that it is because African Americans are more often uninsured.  And that is true.  But even with the same insurance, African Americans don’t have the same access to primary care doctors, specialists and hospitals.  And most distressing, even with the same insurance and being cared for at the same hospitals, African Americans get different care.  In one study I did, if you were a black woman you were much less likely to get referred for cardiac catheterization.

The reason–I fear–is that, despite Dr. King’s advances, and despite civil rights laws, and despite Medicare, racism is a part of the institution of American life, and the seeds of racism still grow into discriminatory practices.

So, now 31 years after Dr. King’s death and 35 years after Medicare broke down segregated wards in the nation’s hospitals, the question for us is:  What can we do today in our Department to eliminate these disparities, whether they grow out of the lack of insurance, lack of access, or lack of quality care for those who get access?

No matter where we work in this Department–

• At the Health Care Financing Administration
• At the Health Resources and Services Administration, where programs are supported to help access
• At the Food and Drug Administration, where safe drugs are assured
• At the National Institutes of Health, where research can identify the causes of disease
• At the Agency for Healthcare Research and Quality, where we find out why the quality of care isn’t what it can be, and where our name itself speaks of an arc, of closing gaps.

In every operating and staff division, We can use the levers that we are so lucky to have, and so privileged to use, to eliminate the barriers to high quality health care.

Because we shall overcome.

We shall overcome the disparities in health care, whether they are due to economic barriers, or institutionalized racism, or even unconscious discrimination.  We–as public servants–can build on Dr. King’s contribution to the moral health of our country to make our own contributions to the physical and mental health of all of its people.

Let’s make that commitment today.

And, during a long and relaxing sea day, I started reading The 5 People You Meet in Heaven, Mitch Albom’s fictional story about Eddie, an amusement park maintenance man who dies and goes to heaven.  When Eddie arrives in the afterlife, he encounters five strangers, but then he realizes how each one of them had significantly influenced his life on earth as they taught him about sacrifice, forgiveness, love, and interconnectedness.

Who knows what happens when we transcend from this existence to the next. But, why wait for heaven? There are individuals who have stepped into your life and forever shaped who you are and how you think. They are the heavenly people you have met on earth.  

Rich

At 16, I left home for the first time to attend an 8-week summer camp. During the day, I was part of a small group of students selected to work in a biological warfare laboratory in Fort Detrick, Maryland. At night, we integrated with a larger group of kids enjoying traditional summer camp activities. Too shy to participate,  I sat by myself writing letters to my parents. Tired of coaxing me to get involved, all the counselors decided to leave me alone—- except Rich who thought I needed some individual attention. During his time off, he took me swimming and running and taught me to dance—all firsts for me and the first time I realized that love exists.  While Rich and I may have had a different future had our lives intersected at another time, he is still my dear friend 33 years later.

Stephen

My first surgery rotation in med school was with Dr. Stephen Kopits,  a pediatric orthopedic surgeon specializing in the treatment of dwarfs.  Voted “Baltimore’s Best Doctor” I was most excited about scrubbing in with him during his famous 12-hour surgeries where he untwisted, de-coiled and re-built the skeletons of his very small patients. But, it wasn’t his technical excellence in the operating room that made an indelible mark on my career. It was the relationship he had with his patients.

Most of his “little people,” as they prefer to be called, ranged in height from 24 to 36 inches. At 6’2”, Kopits towered over them, even while sitting in a chair. So, in clinic, he’d sit on the floor, legs crossed Indian style,  and made direct eye contact with his patients as he spent hours answering questions, drying their tears, and reassuring them that they could live a full and productive life.  “Archondoula, always remember” he said in his thick Hungarian accent, “you have to love your patients.”  I never saw Dr. Kopits after my rotation but when I learned that he died of a brain tumor in 2002, I sobbed.  He taught me what it really means to be physician.

Jeannine

For the last 14 years, Jeannine has been a boss, a colleague, a friend, and a boss again—and, through it all….a  coach. As a senior executive in UnitedHealth Group, she’s was in the position to lobby for opportunities on my behalf and helped advance my career.  But, more importantly, she continually gave me constructive feedback. She expected data when I took a strong stand on issues and she demanded facts when I whined.  She has made me aware of passive-aggressive body-language, counseled me on event-appropriate clothing,  and helped me soften some edges –all with love and objectivity and without fear of consequence. Jeannine taught me how to demand accountability from myself and to inspire it in others. 

David

David, is the man I married and continue to love dearly. Among his many qualities, the true gift he’s given me is his encouragement to take calculated risks and pursue my dreams. He hasn’t painted me into a traditional role as a wife, a mother, or a doctor. Even when he has pushed too hard…it’s been because he believes that I have the potential to reach a bit farther. David believed in me before I believed in myself.

There are others. Without them, I may have never recognized that I didn’t have to be “one of the boys” to be a successful woman in corporate America.  I may have never figured out how to have happy, well-adjusted kids while being a working mother.  And, I may have never learned that true friendship requires brutal honesty.

Love, compassion, self-confidence, accountability, sexuality, balance, friendship.

This is my story. But, how did you get there? The themes are universal—but the details matter and are uniquely yours.

Take the time to plot your own emotional growth on a graph. Who are the people responsible for the inflection points? What were the defining moments? We all learn  and grow at different times, from different people, under different circumstances.

Just like the cupcake, reconstructing your life–piece by piece–helps you appreciate the whole. And, one last thing…it’s also an opportunity to identify what might be missing. In the future, I think I’ll order cream cheese frosting….along with a heaping tablespoon of patience.

Originally posted by Archelle Georgiou on Archelle on Health on January 11th.