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. (more…)

By Hope Ditto

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. (more…)

By Robin Strongin. The passing of Steve Jobs, though not unexpected, is still stunning news.  Disruptive Women in Health Care is proud to call Steve Jobs our October 2011 Man of the Month.  I have often thought with his legendary vision and astonishing understanding of consumer behavior, he could help reform health care.  The explosion in mobile health is just one example.  We have much to learn from this genious in the black turtleneck. I am rerunning a post that invokes his brilliance.  RIP.

Steve Jobs 1955-2011

The day before my daughter Elise’s 15th birthday, the new iPhone went on sale.  My birthday was 4 days later.  So Elise figured out we should buy each other an iPhone to mark our big days.  She planned (and saved) for months.  She spent weeks talking to friends, researching apps on line, planning for such accessories as protective covers, and educating herself on how to maximize her minutes.

When the big day came, we made our way to the Apple store and stood shoulder to shoulder with hundreds of others waiting on a very long line.  Two and a half hours later we were invited, actually escorted, in to the store by an extremely friendly, knowledgeable young man who stayed with us during the entire purchase transaction.

He answered tons of questions (mine, not Elise’s…she already knew everything), politely reviewed various functions with me (Elise was extremely patient during this process), and made great suggestions about which plan was best for us.

While we were waiting on line, I looked around at the people waiting with us–we were an extremely diverse group–and wondered (a) Why in the world were we all willing to wait hours to buy a telephone, a very expensive telephone?  (b) How did the folks at Apple get us to this point? and (c) What lessons could we take away and apply to health care? (more…)

Francis S. Collins, MD, PhD is the Director of the National Institutes of Health and because of  his work and leadership is Disruptive Women in Health Care’s June Man of the Month. Dr. Collins wrote the article below which was originally posted in The Huffington Post on June 15th. This article is a perfect example of why he is our Man of the Month for June.

Broadening Our Global Health Vision

Over the past few decades, global health research has primarily focused on the “big three” diseases: AIDS, TB and malaria. And, thanks in large part to biomedical innovation, we today have better ways to treat these dreaded, infectious diseases and lower the risk of transmission — advances that have saved millions of lives and promise to save countless more.

However, the job of biomedical research is far from over. Given the changing nature of the global health landscape, we must act now to broaden our vision even further. First, we need to apply the power of scientific innovation to more health problems. Secondly, we need to recognize that developed nations are not the only source of such innovation.

While infectious diseases remain a significant problem, low-income nations face many other serious health challenges. In fact, the fastest growing causes of death and disability in the developing world are injuries, such as those caused by traffic accidents, and non-communicable diseases, such as cancer, heart disease and diabetes.

It will be no easy task to identify and implement the right tools to tackle this formidable — and potentially very costly — array of problems in resource-poor countries. To succeed, we will need the brightest minds in all parts of the world, including those from both the public and private sectors, to work together in new and highly creative ways. (more…)

Lee Kirksey

Interview by Disruptive Woman Glenna Crooks.

Meet vascular surgeon Lee Kirksey, MD, MBA. He is assistant professor at The University of Pennsylvania School of Medicine, with a surgical practice based in Philadelphia. His concerns transcend those of his own surgical expertise, his own patients and this region, however.  He is an ardent, engaged, articulate spokesman for cultural competence in health care.

I think about cultural competence sometimes, but I really ‘got it’ talking with him; for the first time seeing how cultural incompetence impacted my family. Here’s the story: a number of years ago as my Father lay in a coma, the physician in charge of his care refused to speak with my Mother. It required an attorney and intervention of hospital administrators to learn any information about my Dad’s condition. His physician – of Asian origin and training – lacked the requisite skills in cultural competency to view my Mom as entitled to a discussion about my Dad. His deficiency brought considerable unnecessary suffering to our entire family. The physician was culturally incompetent.

How did you become interested in cultural competency?

I began to see how cultural competency played a role, not just in health care but in life in general. In a nation that is increasingly more diverse, we are more frequently interacting with people that may look different and possess a different set of cultural beliefs and values.  That is a good thing; there is a lot that we learn about one another. When it comes to health care delivery, when those differences are not acknowledged or managed thoughtfully, it can affect our ability to deliver consistent, high-quality health care.

I saw how some groups experience disproportionately worse outcomes in health compared to others and how disparities begin even before those groups enter the health care system. To make matters worse, it continues while they are in the system and after they leave it.

Ultimately, these disparities create worse outcomes for acute and chronic medical conditions. That’s bad for the patient and it’s bad for the health system. It costs our health care systems more to provide what becomes low-quality care. Because of that, at the end of the day, I know I can’t possibly accomplish my goals as a clinician to help patients to really be healthy.

But there’s more: I saw that cultural incompetency affected groups we don’t usually think of.  Yes, some health disparity happens along socioeconomic lines but cultural incompetency affects women, older people and those with religious, ethnic and racial differences from their clinicians as well.   

Yes, it was in our discussion I realized how that had played out in my own family.  

That – and my own revelations about this – are very profound examples of how medical school and seven years of postgraduate training taught me lots about surgery and managing patient’s clinical problems but not much about some equally important issues at the interface of health care: the physician-to-patient interaction.

I found myself on the front line of the crisis in confidence about health care and to address that, began to learn and appreciate more about cultural competence. As the saying goes; either you’re part of the problem or the solution.

I saw the ways that core beliefs, cultural mores, perceptions of health and social circumstances impact the way a patient interacts with me and everyone else providing care.  For example, as a physician treating an older Latino gentleman who speaks English as a second language, if I prescribe a medication with potential side affects, I need to make sure my practice can provide an appropriate translation of this technical information. I also need to understand how his culture may affect his willingness to speak with me about the side affects in the presence of his daughters. In preparing to talk with him about surgery, I need to appreciate what cultural dynamics will dictate who else should be present for that conversation.

So you see this as a big deal?

Yes. Everywhere I look, I see an America that’s becoming more diverse. By 2050, greater than half of America will be composed of groups that were previously minorities. The greatest growth will occur in Hispanics/Latinos and Asians, greater than the previous influx of eastern Europeans. (more…)

Edward Grandi

“Women need their sleep,” says Edward Grandi, Disruptive Women’s March Man of the Month. Grandi is the Executive Director of the American Sleep Apnea Association (ASAA), the leading non-profit organization dedicated to educating the public and the medical community about sleep apnea, supporting those in treatment for the condition, and advocating on behalf of patients and their families.

Grandi discussed a common misperception he felt Disruptive Women readers should be aware of – obstructive sleep apnea (OSA) is an ailment of middle-aged, overweight men. While it is true that twice as many men as women have OSA, after menopause women are affected in the same numbers as men.

OSA is caused by a blockage of the airway, usually when the soft tissue in the rear of the throat collapses and closes during sleep. Sleep apnea is as common as adult diabetes, affecting more than twelve million Americans, according to the National Institutes of Health. Sleep apnea can strike anyone at any age, even children. Because of the lack of awareness by the public and health care professionals, the vast majority of OSA cases remain undiagnosed and therefore untreated.

The misperception that women are not as prone to OSA as men has dangerous consequences. Women who complain to their health care providers about being tired, putting on weight, losing interest in sex, are often misdiagnosed with depression. They are then likely to be prescribed medications that can only make their situation worse.

Providers unfamiliar with sleep apnea don’t ask the obvious question: “Do you snore?” Other pertinent questions that health care professionals should pose: “Do you have unrestful sleep? Do you awaken with a headache? Do you find yourself making frequent trips to the bathroom at night?”

While snoring itself is not necessarily diagnostic of sleep apnea, in combination with the symptoms mentioned above, it indicates that there is a problem that requires treatment. Sleep apnea does not just rob women of much-needed sleep. It has serious health consequences, such as heart disease, diabetes, and yes, depression.

There are different treatment options for OSA. The right option is determined by the severity of your sleep apnea (from a sleep study), the physical structure of your upper airway, and other aspects of your medical history. The various options are positional therapy, weight loss, avoidance of alcohol and other CNS depressants, oral appliances, surgery, and Positive Airway Pressure therapy.

The takeaway from all this, Grandi says, is “Women should be aware that they can be affected by OSA which luckily is very treatable. Know the symptoms and be prepared to question your provider if they don’t consider OSA as a diagnosis. Bottom line…we all need sleep.”

The ASAA is the leading source of information about sleep apnea diagnosis and treatment. Disruptive women everywhere are encouraged to visit their newly updated website for more information.

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.

By Hope Ditto. Social service programs have never been more important than in the past few years. Stuck in a recession we can’t seem to rebound from, people across the country have found themselves in situations they never imagined – many needing to rely on resources they never expected. And all things considered — the foreclosures, the layoffs, the stock market crashes and the big business bankruptcies – it’s no surprise that people need a little extra help these days. Luckily for them, our country has several social service programs in place to lend a helping hand and ease a burden or two when you need it most. Even luckier for them, nonprofit organizations like the Community Action Partnership (CAP) exist to help you navigate this world, which for many was a foreign concept only weeks or months before.

As their website puts it, “The Community Action Partnership is the nonprofit, national membership organization representing the interests of the 1,100 Community Action Agencies (CAAs) across the country that annually help 17 million low-income Americans achieve economic security.” They accomplish this through their CAAs, which offer those in need opportunities to receive job training, housing, food, energy assistance, financial training, daycare and much more, all with the goal of “making America a better place to live.”

Don Mathis

I recently had the opportunity to sit down with our January Man of the Month Don Mathis, the President & CEO of CAP and ask him about some of the issues and campaigns CAP is focusing on in 2011 – particularly those with a health care angle. This is what he had to say.

Question (Q): As you know, our blog focuses primarily on health care issues. So, I was wondering, what is CAP doing to combat the nutrition disparity that exists between the general population and the low-income population?

Don Mathis (DM): CAP is working with the United States Department of Agriculture (USDA) and the Department of Health and Human Services (HHS) to promote their programs to the approximately 1,100 CAAs across the country. These programs deal with all sorts of issues – everything from food deserts (defined by the USDA as an area with limited access to affordable and nutritious food, particularly such an area composed predominantly of lower income neighborhoods and communities) to summer feeding (for students who, during the school year, receive reduced or free lunches) to the ever-popular fight against childhood obesity.

We are focused on combatting the food desert problem especially. The issue of food deserts has given way to President Obama’s Healthy Foods Initiative, which you may have heard about. Basically, the idea is that we can promote economic development act and farms/farmer coalitions while simultaneously getting rid of food deserts by getting healthy food into areas without it. There is actually a lot of interest in this from all across the board. How it works is we identify areas where food deserts exist – especially areas where it seems like stores are hesitant to open, for whatever reason – and then get federal partners, venture capitalists, co-ops, etc. together to take the risk and open the store. We supplement this with programs that aim at teaching the community to make better choices. The program is in its early phases, but we have already seen a lot of success around the country.

Q: I know you mentioned childhood obesity too – I understand that the Partnership is involved in First Lady Michelle Obama’s childhood obesity initiative. Can you provide some more details about your role in the campaign?

DM: This was another exciting experience for all of us here at CAP. We actually were able to attend Michelle Obama’s “Let’s Move” campaign kickoff ceremonies, and since then, we have been working to educate people about the dangers of childhood obesity and measures people can take to prevent it. We now have fact sheets and other information about obesity and exercise featured in our CAP monthly newsletters and we have been encouraging our CAAs to distribute additional information and notices to their participants. Also, in the works for 2011 – we put together a presentations with the Cal Ripken Foundation that centers around exercise and sports as a means of obesity prevention so we are currently in the process of trying to get that funded.

Beyond the First Lady’s campaign, our CAAs take ample measure to provide participants – especially children – with healthy food options. Many even operate their own feeding programs. In San Bernadino County, CA, an area approximately the size of Vermont, we have a whopping 900 feeding sites that provide not only food but also information about nutrition and obesity prevention.

Note: Don Mathis participated in the Disruptive Women Breakfast on childhood obesity in May 2010.

(more…)

* In true disruptive fashion (we like to keep our readers on their toes) Lance Armstrong was October 2010′s Man of the Month. We are sorry this did not get posted then, but know you will still find the information interesting and relevant!

By Hope Ditto. No matter where you look in October – from the football field to the supermarket, the National Mall to the shopping mall – everyone’s attention is on Breast Cancer Awareness. Of course, considering that October is National Breast Cancer Awareness Month, this is hardly surprising, and in fact it is commendable how much attention from people of all genders, races and socioeconomic classes take pause for one month a year to recognize and redirect energy towards combating breast cancer. But, the Disruptive Women, focused though we are on women’s health issues, thought that the ta-tas had gotten more than their share of the limelight and that it was time to give some attention to a certain OTHER body part.

So, rather than choose someone particularly active in breast cancer awareness or research to be our October Man of the Month (MotM), we took our choice south – literally – and selected seven-time Tour De France champion and relentless TESTICULAR cancer advocate Lance Armstrong for this highly coveted honor.

Why Armstrong? Because not only has he made a steadfast commitment to a health issue affecting a significant portion of the population, but because he also embodies so many qualities we look for in a MotM. He has, against all odds, succeeded in his chosen area of expertise, he has been and continues to be his own best health advocate and he uses his professional fame to direct attention towards a significant medical issue facing the wider populace.

Armstrong, who was diagnosed with testicular cancer in 1996, did not take his diagnosis lying down. Not only did he and his doctor work to devise an alternative and ultimately highly successful treatment plan for his advanced cancer, but he also almost immediately used his fame as a professional athlete to the advantage of cancer patients everywhere. Seeking a greater platform through which to reach people, Armstrong established the Lance Armstrong Foundation (LAF) in 1997 with the mission of inspiring and empowering cancer sufferers and their families. Shortly thereafter, the Foundation launched the highly successful LIVESTRONG yellow band campaign.

Since its establishment, LAF has continued to achieve and surpass goals, to the benefit of survivors of all types of cancer around the world. Not only has LAF continued to advocate and to raise money, but the Foundation has, every year, taken new and greater steps to gain awareness and monetary support for cancer research initiatives – including hosting the first ever LIVESTRONG Presidential Cancer Forum in 2008 and the LIVESTRONG Global Cancer Summit in 2009.

Armstrong, who has now been in remission for over a decade, continues to defy the odds on the racetrack and off it. He continues to be active in the professional cycle racing world, as well as taking LIVESTRONG global and serving on the President’s Cancer Panel. Anyone, healthy or otherwise, would be lucky to achieve even a fraction of what Armstrong has in his life, and for the fact alone that he survived it while suffering from testicular cancer, we are pleased to call him our October Man of the Month.

For a man in his thirties, Duff Goldman has no deficit of accomplishments. Actually, he has accomplished a lot even for twice his 35 years (36 on December 17^th). Besides being a reality TV star, a successful small business owner and a world-class cake maker, Goldman holds a Guinness World Record for baking the world’s largest cupcake. But none of this is what inspired the Disruptive Women in Health Care blog to name Duff the Man of the Month. Nor was it because December is his birthday month.

Sure, we marvel at Duff’s creations on his hit Food Network show, Ace of Cakes every Tuesday night. And we admire his business prowess, and the brand that he created with Charm City Cakes. We even admit that we find his “bad boy” physique – complete with tattoos – charming (and more than a little intriguing). But what inspired us to make Duff our December Man of the Month wasn’t any of these things – it was his love of art and music.

“There are lots of things in life that we don’t understand,” Duff said recently in an interview with Disruptive Women in Health Care founder Robin Strongin, “but chords make us feel emotion. We gain empowerment from their sounds.”

Right then – that’s when we knew Duff just had to be our December Man of the Month – because his feelings on the role of art and music in healing mirror those we will be showcasing in this evening’s Disruptive Women in Health Care Holiday Reception — Art & Music Therapy: A Demonstration of Healing. And Duff said a lot of the things we were thinking to this effect a lot more eloquently than we did!

“Our natural inclination is to create harmony,” Duff commented, and that is exactly what he does in all aspects of his life. In his spare time (which he assures us he has, despite how it appears in the show), Duff plays bass in the indie instrumental band “so I had to?” and sculpts (items that are NOT edible).

As Duff went on to explain, “The power of any smile or laughter is fantastic.” He said that this is one of the things that inspires him to create – cakes, music, art, whatever. “We try to lift everybody up.” But he was careful to point out – “don’t overlook the power of sadness and failure.” You can learn as much (or more) from your struggles and woes as you can from your victories and joys.

Duff also pointed out the power of art and music in giving a voice to the voiceless and in shedding a spotlight on issues of importance. An issue that is important to him is combating animal abuse. As an ardent support of the Maryland Society for the Prevention of Cruelty to Animals (SPCA), Duff appears and makes one of his famous cakes every year for the March for the Animals.

Tonight’s Disruptive Women Holiday Reception highlights the power of art and music in healing and will feature an original Duff Goldman cake creation (cake pictured below)! The event will be held at The Kreeger Museum  here in DC and include the live music, the cake unveiling and more!

Starting December 2^nd we will be launching a series on innovation, broadly defined. These posts will be compiled into an e-book and released early in 2011. The following post, an interview with our November Man of the Month, Dr. Jack Lewin, CEO of the American College of Cardiology will help get you prepared and excited for the engaging and informative posts to come.

Jack Lewin, MD

Jack Lewin, MD has been the Chief Executive Officer of the American College of Cardiology (ACC) since November 2006. Under Dr. Lewin’s leadership, ACC has continued to build upon its standing as a national leader in advocacy, with a particular focus on reforming Medicare, Medicaid, and the financing and delivery of quality health care. We had the opportunity to ask Dr. Lewin about his thoughts on innovation in the medical sector; below are his responses.

Q: The American College of Cardiology’s mission is transforming cardiovascular care and improving heart health through continuous quality improvement, patient-centered care, payment innovation and professionalism. How big a role does innovation play in ACC achieving this mission?

Innovation is necessary to reduce morbidity and mortality – we have seen a 30 percent reduction in cardiovascular mortality nationally within the past 10 years because of new therapies, prevention, systems of care, and innovation.  As the US works towards a decrease in health care costs and works toward promoting sustainability, we have to prevent falling into a trap of slowing the pace of innovation.  The big secret in US health care is that a systematic increase in quality is the way to reduce costs by reducing admissions, readmissions, and complications, and by improving outcomes. Without innovation we will see the increase in people with obesity and diabetes that require expensive treatments we can’t afford. We have to keep moving to create new and better therapies to arrest chronic cardiovascular disease, more effectively treat acute crises, and prevent diseases through earlier diagnosis. 

Q: In a recent blog you said, “I was a speaker last week in another roundtable on “innovation,” something our nation is trashing as we pursue perfection in patient safety.” Can you elaborate on the relationship between innovation and patient safety? Is there anything that can be done to alleviate some of the concerns surrounding medical innovation so that it can flourish?

Today’s regulatory agencies in the US have become more conservative than in the EU, UK, and elsewhere in the world.  Unfortunately this is forcing the US research and biotech industries offshore.  From the point of view of CMS and the federal government, the focus is so fixed on cost containment that the agencies don’t think about how to jump beyond the problem of rising costs by reducing the need for outdated therapies and diagnostic devices and replacing them with better ones that essentially reduce morbidity and decrease overall costs.  Investing in comparative effectiveness research is investing in innovation, but not if it turns into a strategy of purely cost containment in an ever-narrowing context. 

The FDA has become obsessed with concerns around individual patient safety, which is admirable; but if the quest for innovation requires a zero tolerance for adverse events, we will be scientifically paralyzed. Patient safety certainly shouldn’t be deemphasized, but we have tools such as registries that can increase post market surveillance and give new therapies the opportunity to safely reach patients-in-need sooner, and keep the research infrastructure and culture of innovation alive in the US. The “TAVI,” transcatheter aortic valve intervention, is a good example. This percutaneous valve replacement technology was developed in the US, but has been implemented in the UK, Europe, Canada and Asia because we are too risk adverse to bring this potentially lifesaving technology to elderly who are not candidates for open chest surgery. This is taking patient safety to an extreme that is stifling innovation and needed medical and life saving progress.

Q: What are some promising innovations in the field of cardiology?

Promising innovations include the TAVI percutaneous valve replacements as well as new devices that provide ventricular assistance and support, and new short-term uses for ventricular assist devices.  Cardiovascular genetics and cardiovascular cell therapies are also an expanding frontier.  There are new therapies on the horizon such as warfarin alternatives for safer anticoagulation, along with better pharmacologic ways of preventing and treating coronary artery disease, heart failure, arrhythmias, diabetes and hypertension. (more…)

By Robin Strongin. E-Patient Dave:  One Patient Advocate’s Survival Story and What We Can Learn From Him—How to be an Empowered, Engaged, Equipped and Enabled Patient

Photo by Roger Ramirez, Chariot Photo. License: Creative Commons Attribution ShareAlike 3.0

Richard Davies deBronkart Jr , known by many as e-Patient Dave, is a cancer patient and blogger who, in 2009, became a noted activist for health care transformation through participatory medicine and personal health data rights.  In 2010, he became a published author and Disruptive Women in Health Care’s August Man of the Month.

I was a middle-aged guy going through life, as involved with my own health care as I was with my car’s carburetor, which is to say, virtually not at all.  And then I found out I was almost dead.

That’s how my interview with Dave started. 

Dave was diagnosed in January 2007 with Stage IV, Grade 4 renal cell carcinoma (kidney cancer) at a very late stage. His median survival time at diagnosis was just 24 weeks; with tumors in his lungs, bones, and muscle tissue, his prognosis was dire.  Now, almost four years later, e-Patient Dave has emerged as a patient advocate, with a self-described calling to connect, engage, and empower patients.

Dave had been proactive for years when it came to choosing providers he liked, so when it came to crunch time, he  was fortunate on several levels: he received excellent treatment at Boston’s Beth Israel Deaconess Medical Center; his physician, Dr. Danny Sands, who in addition to serving as Dave’s primary care doc since 2003, also serves as the Senior Medical Informatics Director at Cisco and as such is on the bleeding edge of online communications and health information technology; and, the Biologic Therapy program helped Dave participate in a clinical trial for the powerful High Dosage Interleukin-2 (HDIL-2). His last treatment was July 23, 2007, and by September it was clear he’d beaten the disease. His remaining lesions have continued to shrink.

Technology and Patient Advocacy:  An Author is Born

Dave observed that many patient advocates come to patient advocacy because they were injured, or had a negative experience with the health care system.  This was not the case for Dave.  He had a life altering experience; a near fatal disease that rather than kill him, turned his life in a different direction.

Before his diagnosis, Dave was a savvy online guy. “I’ve been online since 1989, heck I even met my wife online.  So it’s no surprise that I ended up with a cutting edge academic medical center and physician.”

While the health professionals, life saving medicines and medical technologies were key to his survival, so too was the Internet—it became another of Dave’s lifelines:

• Dave was able to communicate with his primary care physician by email and his hospital was committed to making information available electronically;
• Dave used the web to access information about his disease;
• He joined the Association of Cancer Online Resources, an expert patient community; and
• A participant in online communities before his illness, Dave quickly figured out that using online technology to update his friends and family not only provided an efficient means to communicate what was happening and how he was doing, but it connected him to a great number of people who cared about him, supported him, were there for him.  He started an online journal and support community on CaringBridge.

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By Robin Strongin.

Paul F. Levy, Disruptive Women’s June 2010 Man of the Month, was appointed President and Chief Executive Officer of the Beth Israel Deaconess Medical Center in Boston in January 2002.  BIDMC is one of the nation’s preeminent academic health centers, providing state-of-the-art clinical care, research, and teaching in affiliation with Harvard Medical School.  Previously, Mr. Levy was the Executive Dean for Administration at Harvard Medical School, where he was responsible for administrative, budgetary, and facility issues, as well as community and governmental relations.  He was also involved in coordinating collaborative ventures between HMS and its affiliated hospitals.  Before joining Harvard Medical School, Paul Levy was Adjunct Professor of Environmental Policy at MIT, where he taught infrastructure planning and development and environmental policy for seven years.  Mr. Levy has served as Executive Director of the Massachusetts Water Resources Authority, Chairman of the Massachusetts Department of Public Utilities, and Director of the Arkansas Department of Energy.

Ever since I created the Disruptive Women in Health Care blog, I wanted to meet Paul Levy.  Who was this guy who boldly started blogging when most executives in health care either didn’t know what blogging was or were frightened by legal into thinking that blog was a 4-letter word?  His blog, Running a Hospital, is “a blog started by a CEO of a large Boston hospital to share thoughts about hospitals, medicine, and health care issues.”

I recently spoke with Paul and the first thing I asked him was Why Blog?  Here’s what he had to say:

Why did you decide to blog?  Was there one incident that propelled you, an aha moment, or had you been thinking about it for a while? Paul simply said, “It was a lark.”  He explained that in August ’06 he was reading a New York Times article about how executives don’t blog.  “Being a contrarian, I started blogging.  It was an excuse to learn.”  Paul mentioned that the Boston Globe took notice, wrote about his blogging and then it was “off to the races.”  He added that he’s obsessed by blogging…in a good way.  “It helps consolidate my thinking.”

As you reflect back over your years of blogging, what have you learned? “I hadn’t realized the power of blogging until I actually did it.”  He gave me an example: One of his top priorities at BIDMC is a major emphasis on quality and safety, eliminating preventable harm.  Paul experimented by using his blog to publish infection rates and clinical outcomes. “I didn’t worry or think about how unusual it was—I just did it.” [Pretty disruptive of him—I knew I liked this guy]. He discovered that the blog served as “an incredibly powerful, transformative management tool.”  The blog became the vehicle that allowed everyone in the organization to see the data, to see how they were doing.  An audacious goal was established, and the blog enabled everyone in the hospital to track progress. According to Paul, publishing the data on his blog helped foster the desire to meet the goal.  “The approach was well received and appreciated. And, it created no legal problems.”

Since last week’s Health 2.0 conference in Washington DC was fresh in my mind I asked Paul, What do you think of the blossoming Health 2.0 phenomena…what is it’s promise and what work needs to be done? He once again stressed that the value of Health 2.0, and social media in general, lies in the ability of these tools to provide a way for people to share and exchange data, information and ideas. “They support a community of interest.”

We talked for some time about how unfortunate it was that health care companies, particularly those in the life sciences, fear they will be criticized—or worse, if they take the social media plunge.  We also agreed that the real power of these tools reside in patient advocacy—enabling people to actively participate in their own health.

I have to ask—health reform—as a veteran of the Massachusetts experience, what do you think about where we are and where we are headed? “Massachusetts is prologue for the country as a whole.  We certainly had a head start with reform, likewise with the cost implications.  We are working through all that.”  Paul stressed to me that the costs were under-estimated in the law and the delivery system is still a mess.  He doesn’t see the government fixing that. “We won’t improve the delivery system by government fiat; it has to come from the profession.”

Any words of wisdom to share as we conclude our conversation? “Please, be disruptive… disruption and imagination are the driving forces for change.”

Thomas Maeder, our May 2010 Man of the Month, is the author or co-author of twelve books and numerous articles in national publications, and has long experience in the biomedical field as a writer, educator, and consultant. Below, he shares his thoughts on rare disorders and their place in the drug market.

Orphan Diseases – Bellwether of Health Care

“The only people interested in rare diseases are those who have them, and that’s not a lot,” an editor once told me when rejecting my proposal for a book on orphan diseases.

In reality, nearly thirty million Americans – one in ten – suffer from some 7,000 rare diseases, making them collectively very common indeed.  Though they differ wildly in their causes and manifestations, they share many characteristics in terms of the uncertainty, isolation, and costs imposed upon sufferers and their families, the challenges they pose for our health care system and sense of social responsibility, and their potential value to medical research.

In the United States, orphan diseases were defined by the Orphan Drug Act of 1983 as those that affect fewer than 200,000 people domestically.  This landmark legislation offered incentives – tax credits, a period of market exclusivity independent of patent protection, research grants – for manufacturers to develop clinically valuable treatments that would not be economically viable in the normal pharmaceutical market.  Previously there had been tragic instances of known, potentially useful therapeutics never taken to market, or others of already proven effectiveness that were withdrawn, because they did not meet a drug company’s threshold of profitability.  The definition encompasses some familiar disorders, such as cystic fibrosis, muscular dystrophy, hemophilia, Huntingdon’s Disease, and Crohn’s disease, along with thousands of much rarer conditions, including fibrodysplasia ossificans progressive (FOP), Jumping Frenchmen of Maine, and Sakati Syndrome, or acrocephalopolysyndactyly type III, which for many years was represented by a single patient in Saudi Arabia.

In less than thirty years since passage of the Act, more than 300 orphan drugs have been approved for market.  Some are produced by large pharmaceutical companies.  The biotechnology industry also benefited tremendously from the orphan drug market and its incentives.  In addition, as one pharmaceutical executive told me, big drug companies may need billion dollar drugs to support not only R&D but also massive corporate infrastructures and the sales and marketing machinery, but a small company aiming at a well-defined population, with a small number of specialized physicians and facilities, patient advocacy organizations, and unusually motivated patients, can get by quite nicely on mere tens of millions of dollars in revenues.

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After watching his parents and six siblings die from undiagnosed, untreated diseases, Peter Kithene vowed not to let that happen to other families. “I want to give kids their parents and give kids their lives,” he tells Disruptive Women.

While a college student at the University of Washington, Peter opened the first Mama Maria clinic in his home village in Kenya. He now has two clinics, three small out posts and just finished a business plan to open a third.

He wants all people in Kenya to have accessible health care.

Disruptive Women is proud to name Peter our April man-of-the-month.

He took a few minutes to speak with Disruptive Women’s Wendy Grossman.

Q: I read that by the time you were 12 — both your parents and six of your siblings had died from undiagnosed diseases? Is that correct?
A: Yes.

Q: What happened?
A: They got sick. At that time I didn’t know a lot. I was a kid myself. The kids got sick and died when they were young.

What I saw, what stayed with me until today, was my brother (who is still alive) almost died. He got very sick and had meningitis. Nobody knew what was going on. There were no laboratories to take him. When his illness got very serious, we traveled very far with him. And they said, ‘This kid has two hours to live. If we don’t get him to the hospital now, he’ll die.” They had an ambulance 15 miles away, and they drove across the border into Tanzania to a hospital there. And they treated him and treated the meningitis. Then he ended up losing his hearing and speech — he became deaf. This was a really talkative kid.

I just saw that, he could have died. If there wasn’t an ambulance and a reliable place to take him, and a hospital, he wouldn’t have lived. He lived. And after I opened the clinic, I saw kids coming in with the same illness, the meningitis. But we are able to treat it, and they got to go home and they don’t become deaf like my brother.

And lives are saved.

The other ones who died I don’t know what they died from. And then my parents also died. They really wanted to go to hospital. They needed the care, but there was no place to take them. Or the places they could go were just too expensive. Nobody could afford that.

Q: Is it just you and your brother now? Or do you have other siblings?
A: Me and my two brothers and one sister.

Q: Wow that’s a lot of kids your parents had. Tell me, why did you start the clinic Mama Maria? I read that your work is, in a way, avenging their deaths.
A: Avenging their death. No, I don’t think it’s avenging. It’s just giving life opportunities to people. I got a chance. I had the dream after my parents passed on — my dream as a kid was to get a place people could go to when they’re sick and get treated.

With that dream in mind, I worked so hard. Every step I made along my way from the village and everywhere I went was in doing that. I was volunteering as a kid in clinics and visiting with the sick in their homes.

It’s a dream I had at a very early age.

Q: Did you want to be a doctor?
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