By Joy Burwell. Thanks to this morning’s panelists Gwen Tolbart, Don Mathis, Diana Long, Aimee Smith and Rainey Friedman for their insights. This event would not have been possible without our sponsors The Hill and Candace Littell, so thanks to them as well. If you weren’t able to attend, you’ll want to read this summary post. And stay tuned for the video; we should have that edited and posted next week.

Childhood obesity was the subject of today’s Disruptive Women in Health Care’s Monthly Breakfast Series Childhood Obesity: A Big Fat National Challenge. Childhood obesity has received a great deal of media attention with First Lady Michelle Obama making it one of her platforms. As noted by all of this morning’s speakers her “Let’s Move!” campaign is well laid out and has the potential for success if we all take a role in its implementation.

Gwen Tolbart a Professional Speaker, award winning television broadcaster and moderator of this morning’s event opened with a vibrant description of a disruptive woman in her life who helped shape her views, including ones on childhood obesity.

Don Mathis, President & CEO of the Community Action Partnership discussed the issue on the federal level. He made three important points: obese kids do not do well in school, they have numerous health problems throughout their lives and they cause a national security problem by decreasing the number of individuals physically able to serve in the military. Additionally, he discussed the issue children in low-income areas have accessing healthy food, commonly referred to as food insecurity or more recently, food deserts.

Next, we took the discussion to more of a local level hearing from Diana Long and Aimee Smith, both of whom have been or are involved in the Philadelphia YMCA. The key to solving childhood obesity from their perspective, is small concrete steps. The ultimate goal is to build social values that will create the necessary behavioral changes. One way the Philadelphia Y is doing its part is by giving all seventh graders in Philadelphia a free YMCA membership. By doing this they are trying to catch kids at a point in time when they are impressionable and need the support to make healthy decisions.

Last but most certainly not least, Rainey Friedman discussed the importance of meeting kids where they are, which today is online. She also stressed the importance of making physical activities fun (and subliminally educational). As founder and executive director of the DreamDog Foundation, an organization that targets childhood development through preschool education and literacy, she had great experiences to share on how to accomplish this. One example she offered was when she developed and taught kids a song about the negative consequences of drinking soda. When she went back to meet with those same kids they had mastered the song and a vast majority of them had cut out sodas. Her final message and a good one to close with was: we need less talk and more action to address childhood obesity in the US…LET’S MOVE!

We hope you will join us for the next breakfast meeting, “HEALTH 2.0: User-Generated Health Care,” June 8, 2010 from 7:30 a.m.-9 a.m. in the Rayburn House Office Building. If you are interested in attending, please register here: www.disruptivewomen.net/breakfastseries. Men are welcome, encouraged even, to attend. We doubled the number of men, so come on, you know you want to.

Don Mathis put it this way: would you rather be in a room with boring men pontificating or in a room full of Disruptive Women in Health Care.

Zoe, our first grader, had a homework assignment this week for her class unit on families. Each child was asked to bring in pictures showing the holidays they celebrate at home. Independent as usual, Zoe ruffled through a series of albums and selected four photos that she wanted to take to school. “These are pictures from our holidays,” she announced. “Here’s us lighting the menorah for Hanukkah; this was Rosh Hashanah dinner; here’s a picture of me with the Passover Seder plate; and here we are on our cruise!”

“Zoe, WHAT are you talking about?” I asked. “Cruises aren’t a holiday.”
“Yes they are mom. We do it every year. It’s a tradition!”

The reflex was to correct her. But, I realized that I was the one who had literally and figuratively missed the boat. I was boxed in to the traditional definition of “holiday” as a religious, cultural or national event. However, Zoe, with her seven years of wisdom, freely interpreted “holidays” as those times when we predictably spend dedicated time together as a family. To her, it is about the experience…not the calendar. Needless to say, she turned in her homework assignment with the pictures she originally selected.

The interaction was an important reminder: words take on the meaning we assign to them.

So, I started thinking about other words that are chock full of boundaries like…”family.”

What is family? The Latin term “familia” means household. The first entry in Webster’s Dictionary says family is “a group of individuals living under one roof and usually under one head.”  The Census Bureau defines family as “two or more persons, including the householder, who are related by birth, marriage, or adoption, and who live together as one household.”

Until we leave home in early adulthood, our family–particularly parents and siblings–is our most important and reliable source of guidance, love, and protection.  Ideally, our birth family continues to be a source of strength and support for us even as we marry, have our own children, and live under a different roof with our new family.  Unfortunately, all too often, the dynamics with our parents are stressful and sibling rivalry re-surfaces. Nevertheless, we generally make great efforts and sacrifices to maintain a connection with the family we grew up with.  We forgive, we tolerate, we turn the other cheek, and we try hard to make it work. It’s important.

But why? Why is it important to maintain relationships with parents and siblings? I have asked this question of others and myself over the last year. I couldn’t arrive at a logical answer on my own and kept getting answers from others that seemed superficial:
“Because they are family!” Circular logic. Doesn’t fly.
“Because blood is thicker than water.” Sorry. Last I checked, parents and siblings don’t share a common vascular system.
“Because you can’t divorce your family.” A bit irrelevant. You can’t get divorced if you never married them.

It was Laura Engler’s response that finally made sense to me:
“Archelle, staying connected to family is important because you have shared history. They are the only people who don’t need an explanation for a quirk, a family ritual, or an inside joke. They just know.”

I got it. Family = those individuals with whom we grow, develop memories, and have trust.  If we give ourselves the freedom to transcend the boundaries of the etymologic or legal definitions of “family,” then we realize that our dearest friends…are truly family. What a gift! At the same time, blood relatives with whom we no longer have memories, trust, or love…are not. While this perspective may be hard to swallow, accepting and understanding it offers peace and consolation when lifelong bonds are permanently fractured.

This of course leads to more questions: What are the definitions of friend, trust, and love. What about hope, peace, and life? Their meaning is important and very personal to you. Don’t  passively rely on traditional norms or Webster’s Dictionary. Take the time to remember your experiences around these words. Then, give yourself permission to think and act like a 7 year old who is old enough to be observant and thoughtful while young enough to see the world through a fresh new lens.

Create Health,
Archelle

This blog entry was originally posted in Archelle On Health on May 21, 2010.

I have always been a bit fascinated by people who make a living telling people what they want to hear.  To be perfectly honest, I actually think it is because I envy them. How nice is that for generating income: making people perky, reassuring them, telling them everything is fine, promising them they are right about everything, helping them keep their denial systems intact?

My envy stems from my irritation with myself for choosing a different path. I have spent most of my life telling people what they need to hear, hence often what they don’t want to hear. I try for balance, noting all the “good stuff”, then offering the counterbalance.  I find one unwelcome message can drown out all the affirmative messages. People home in on that “bad” stuff with an inerrant tenacity.

The differences between these two approaches are instructive.

Feeling good is quite popular. Creating the conditions for feeling good can lead to fame and fortune. We want to hear from these purveyors of endless good news and reassurance. There is all that amazing research on happiness, the blossoming theories and practices of appreciative inquiry, the neuroscience data on endorphins: you cannot ignore this compelling information.  The reassurance that one is right about everything can make for intense feelings of joy, hope, and optimism. The person who triggers the feelings is brilliant, constructive, right.

In contrast, mentioning the elephants in the room can lead to all manner of irritable behavior, judgments that are hard to absorb. I am too negative, a prig, a moralist, a mean person, a downer. I make people feel bad. Why do I have to bring all that stuff up?

It has taken me several decades to understand that wisdom lies in the middle ground, so I persist. It is in that spirit that I mention an important health care elephant.

• 27 to 30 percent of Medicare payments cover the cost of care for people in the last year of life.
• 40 percent of Medicare dollars cover care for people in the last month.
• 12 percent of Medicare spending covers people who are in the last two months.

We need to have a conversation pretty soon about longevity. Longer life spans are supposed to be the stuff of a success story, not a promise of immortality. We are going to die, eventually.

Exactly how long are we supposed to live, and how much money are we going to spend on dramatic efforts to extend the life of an elderly person for another month or week?  What are we going to do about all these studies that say that the lion’s share of health care costs occur in the last year of life?

How do we as a nation start a constructive discussion about death and how to let go of those we love without insisting that we spend a few large chunks of change on them while we struggle with their inevitable demise? How are we going to help families have this conversation without triggering the “death panel anxiety syndrome”?

Who will lead us in this effort? Theoretically, health care professionals would, however many are ill equipped to do so. They were educated to sustain life at any cost, literally. For many of them, success is not tied to a good death but the ability to not let death happen.  Their job is to save us. It is perhaps unrealistic to expect that they would be good at both warding off death and embracing it.

The antithesis of this worldview is found in the amazing work of the hospice community. They have been around for a while now. As someone who is willing to talk about death, I have had numerous conversations about hospice care, and have yet to hear a single person say this community’s work was anything but splendid. Quite a record, albeit anecdotal!

Maybe we need to make sure that their voice is heard more clearly in the health care “debate” about cost. Maybe we need to make sure experienced hospice workers are at every health care policy table. Maybe they have answers to our questions that would help us all grapple with death and dying a little more constructively.

They might even tell us what we want to hear.  More importantly, they might also tell us what we need to hear.

By Becca Camp. I am a pre-med student. In the last year, I’ve had the unique opportunity to attend several conferences that shaped my sense of vocation. Perhaps most significant was Mayo Clinic’s TRANSFORM Symposium, hosted by their Center for Innovation; over the course of a weekend, my calling to study care delivery (how to get high-quality care to people who need it the most) was unearthed. Volunteering at TEDMED first left me feeling discouraged; surely there was no way I’d ever make the same impact as the Dean Kamens and Craig Venters of the world. Almost immediately, though, I found myself surrounded by attendees who looked at me plainly and asked, “Why not?” They had no doubt in their mind about my potential, and as the conference progressed, I was able to tamp down my own doubt. With my newfound determination in place, I went to DC10 Summit Series where I was introduced to the people of my own generation who have a concrete plan for changing the world. This year I’ve been able to meet invaluable mentors, and been exposed to incredible ideas.

These opportunities came about largely from my use of networking on blogs and Twitter. I continue to be surprised and delighted by the people who reach out when I talk about things that interest me, and who offer to get me more involved in the conversation at these conferences. Once there, I become the pupil of every person I meet. But naturally, I tend to be one of the only students, if not the sole representative, at every conference I attend. I’m surrounded by very few peers.

The result of these conferences was the discovery of my mission: effecting a paradigm shift in the culture of health in this country. It’s the vision that keeps me committed to writing, studying, and applying to medical school. But when I go back to class, and try to talk to my colleagues about what I’ve learned, I have trouble finding anyone interested in listening. It’s clear that the lack of a shared experience precludes shared enthusiasm. Inevitably, my professors are the only ones willing to engage in conversation about what drives me–and I go right back to being a solitary pupil. Broaching topics such as care delivery with my pre-med colleagues is often met with blank stares or flippant remarks about helping people being a means to a financial end. Additionally (and I hesitate to generalize), but in my experience, it seems that the women I encounter in my classes are difficult to engage about larger matters of vision. Older generations of feminists remember a time where young women were afraid to show their intelligence and competence in conversations that go beyond daily life and relationship issues. Could this still be going on?

Of course, the internet gives me the ability to connect with passionate women and men of all ages who are as eager as I am to teach and learn. However, the absence of face-to-face interaction nags at me–savvy as I may be at building relationships in my social networks online, those professional relationships become the most meaningful and permanent only after meeting in person. All this leaves me in a sort of liminal space, somewhere between the students I spend time with every day and the mentors who show me what is possible.

So here’s an open question for Disruptive Women: How does one go about establishing a peer group, one that gathers like-minded young people (women, in particular)? With or without access to the internet, during college as well as later in life, how did you find the people who engaged you?

Earlier this week Dr. Margaret Chan, Director General of the World Health Organization, addressed the World Health Assembly in Geneva and brought up the topic of vaccines. She noted some of the successes in addressing the world’s health and development issues and stated that “vaccines are among the best life-saving buys on offer, preventing an estimated 2-3 million deaths per year.” In the next minutes, however, she also addressed the setbacks – occurring when people decide that vaccines are too risky. She counted the problems with measles, pandemic vaccines and polio.

In fact, I just finished reading a unique recount of the measles vaccine controversy. Something that wasn’t a paper at all, but a comic strip type account that said it all. I highly you encourage to read this. For those of you not familiar with the Andrew Wakefield measles saga, the British doctor claimed the administration of MMR vaccine was linked to autism.

The media was all over this and picked it up everywhere. Unfortunately, despite a lack of evidence to support his claims, co-authors who later removed their names claiming the study was flawed and a retraction from the Lancet in Feb 2010 after the General Medical Council in the UK found his conduct “dishonest and irresponsible” (more than a decade later), the damage was done and continues to be felt. Fueled by sensationalist media reports, many parents in the UK and around the world chose not to vaccinate their children and outbreaks of measles began to occur. The misinformation was further propagated by celebrities who get more TV coverage than the scientists who have shown through studies that there is no link between autism and vaccines.

Every adult has the right to consider what is best for themselves or their child. But shouldn’t more be done to consider the impact of disregarding the evidence has on others? There will always be risks with vaccines and science can’t always find or predict every risk. The experience with measles vaccines and the supposed link with autism shows that there also health consequences when individuals refuse to accept the findings of rigorous research.

By Sheryl Flynn.  Earlier this week, the American Heart Association (AHA) announced a new partnership with Nintendo of America.  According to their website (www.activeplaynow.com), the AHA and Nintendo are working together to promote physically active play as a part of a healthy lifestyle. This is the first time that the AHA has partnered with the video game industry to help consumers discover how video games that incorporate movement can be beneficial to health.  According to their “Healthy Lifestyle Tips” they encourage everyone in the house to enjoy active-play video games together and when the weather prevents outdoor activities- they encourage hosting an active-play video game tournament in your living room. 

 Today, according to AHA’s press release- They are not supporting playing all video games in an effort to promote a healthy lifestyle- only the Nintendo games such as WiiFit™ Plus and Wii Sports Resort™ software for the Wii are supported by the AHA.  The AHA’s logo will be found on these products beginning this summer. 

 The AHA is “trying to reach people where they are.”  They suggest that if you don’t move at all- move some.  If you move a little, move a little more.  In essence, if you go outside and play sports or are already active- they are not suggesting that you come inside and play video games- rather, they are trying to get those people who play video games (or are otherwise) mostly inactive- to start doing something active.  They figure, if you like playing video games and typically play video games with your thumbs while surfing the couch- perhaps you could get a little exercise by playing active video games. They are targeting the “no physical activity” group and trying to get them to move!

So, as one would expect- there is controversy over the two companies working together.  Some people believe that both Nintendo and the AHA see a significant return on their partnership investment.  But the AHA has suggested that this is not the case.  Nintendo has contributed $1.5million to AHA to fund a prevention platform aimed at informing Americans about heart disease and stroke prevention.  Another important consideration to keep in mind is that Nintendo is not the only “active-play” video game company out there.  Sony PlayStation released the “EyeToy” years before the Wii and it offers many hours of fun, active gaming as well.  The EyeToy is fun because you can see a video projection of yourself in the game, rather than controlling an avatar as with the Wii games. Microsoft plans to release Project Natal later this year- these games will also offer hours of active gaming fun! There are a number of other off-the-shelf gaming devices that promote active gaming- the consumer should be encouraged to seek the game that would be most fun for them. 

Perhaps most exciting, however, is the Innovation Summit that the AHA intends to host.  With $350,000 support from Nintendo, the AHA will bring together “Thought Leaders” in the area of health care, research, physical activity, fitness and video gaming to look at the synergies and potential benefits of active-play video games and physically active lifestyles.  Now that is exciting!  Finally!  The game industry, researchers and health care industry all together in one room to envision the future!  Wow!

The following is a guest post by Irene Natividad. Ms. Natividad is President of the Global Summit of Women, an international economic forum for women. She also runs her own public affairs firm, Globe Women, based in Washington, D.C.  Ms. Natividad is a frequent commentator on PBS’ ‘To The Contrary’, CNN, Good Morning America, Fox News, MSNBC, and other television news outlets. She has written editorials for USA Today, The Los Angeles Times, The Washington Post, and The Chicago Tribune.

Imagine if businesses – and business leaders – could help beat cancer. It may seem an unlikely match, but I believe they can.

My organization, Global Summit of Women, and I have taken on the challenge of cervical cancer based on one key fact: cervical cancer is almost entirely preventable. And yet it continues to strike at least 500,000 women each year, killing more than 270,000.

To me, as president of the largest economic forum for women, these figures are outrageous. Women are at the heart of our global economy. Whether they are tilling a field in Uganda, running a Laundromat in Paris, or leading a Fortune 500 company in California, our economies are only as strong and healthy as they are. Global economic growth, especially in developing countries, depends on empowering women to control their own economic futures. Without health, this is impossible.

This is why thousands of leaders from corporate, government, and non-profit sectors are joining me this month at the 2010 Global Summit of Women in Beijing, and lending support to our Global Consortium of Women to End Cervical Cancer, the closing event of our three-day gathering. Year after year we make it our mission to ensure that women leaders spread the word about cervical cancer prevention, focusing on efforts to increase access to the screening and vaccines necessary to make cervical cancer the first cancer the world gets rid of for good.

The alternative is dire: If we fail to take real steps toward preventing cervical cancer, the number of worldwide diagnoses could reach 700,000 annually by 2020. Most of these will be in developing countries, where 80 percent of cases occur. Cervical cancer tends to strike women in their prime, and because so many cases in developing countries go undetected until they’re too severe to treat, the toll cervical cancer takes on economies is astonishing.

These figures are particularly egregious because cervical cancer prevention does not depend on future technological discoveries; we already have everything we need to do the job. The cause of cervical cancer is known: human papillomavirus (HPV). Screening for HPV can help identify women who are already at high risk for cancer, allowing them to be treated early as necessary. Vaccinating girls against HPV can help prevent cervical disease as today’s young generation become women. Together, these tools form a powerful defense arsenal.

Even more promising for developing countries, researchers are creating a new HPV test that doesn’t require running water, electricity, or highly trained laboratory professionals. It would allow women to be screened and, if necessary, begin treatment on the same day. Technologies that can help broaden access to women in low-resource, rural areas promise to bring about a turning point in the areas hit hardest by cervical cancer.

So if we agree that wiping out cervical cancer makes sense, and technology isn’t the problem, then what’s stopping us? The global community needs to prioritize the cause, and global business leaders, particularly women, can be the key to making this happen. We need to recognize that cervical cancer is not merely a health issue, but an economic issue that impacts development enormously. As such, governments and donors must commit the funding necessary to ensure that infrastructure for implementing screening and vaccination technologies is available and affordable. Organizations must encourage sustainable public health programs to reach all segments of a country’s population. All women must take action to protect themselves and their daughters.

Cervical cancer is one issue on which we can make unprecedented progress now and leave a legacy of a cervical cancer-free world. Over the past few years, groups such as the European Women’s Management Development Network, the International Federation of Business and Professional Women and the Inter-American Commission of Women have all been a part of the Summit’s Consortium of Women to End Cervical Cancer. This year, the All China Women’s Federation, the First Lady of Tanzania, and Sun Network co-owner Yang Lan are joining our call to action. We all have an extraordinary opportunity to make cervical cancer history, and we must not let it pass us by.

This blog entry was originally posted at The Huffington Post on May 17, 2010.

By Lynn Shapiro Snyder. Reproduced with permission from BNA’s Health Care Policy Report, 18 HCPR 680 (May 3, 2010). Copyright 2010 by The Bureau of National Affairs, Inc. (800-372-1033) http://www.bna.com

Health reform is a process, not an outcome. The health care industry needs to treat Phase II of health reform—–implementation by the Executive Branch—with the same focus and zeal as they did with Phase I—deliberation and passage by the Legislative Branch. It may not be as sexy as Capitol Hill but industry participation in shaping implementation through the Executive Branch could have an even greater impact for industry efforts. Phase II is when the rubber of ‘‘the law’’ meets the road of ‘‘the real world.’’ We are one month into implementation so now is the time for the health care industry to step up to the plate and continue to shape the details of federal health reform currently being developed and implemented by the Executive Branch.

As with any topic of public policy, proposed laws are discussed in Congress. Final laws are sent to the Executive Branch for interpretation and rulemaking within something called ‘‘congressional intent.’’ Public comments hopefully are considered by the relevant agencies writing the regulations. Challenges to the regulatory process may occur when the regulations go too far from the words and intent of the statute. Eventually, issues may be sent back to Congress to amend the law. The federal Medicare program has worked this way for over 43 years.

However, in the implementation of federal health reform, we are seeing new creative elements to the implementation process. The Obama administration is asking industry to take steps that are not in the statute. For example, on April 19 Department of Health and Human Services Secretary Kathleen Sebelius sent letters to health insurance companies asking them to continue to cover young adults so that they can remain on their parents’ policies notwithstanding the terms of the policies (18 HCPR 604, 4/26/10). This health reform provision does not take effect until Sept. 23, 2010. She was seeking
collaboration with industry on a topic that could make sense for all involved.

Sebelius also recently sent a letter to the health insurance industry trade group, America’s Health Insurance Plans, challenging the group’s interpretation of a section of the statute related to the coverage for children with pre-existing health conditions even before any regulations were published (18 HCPR 469, 4/5/10). The statute appears to nullify pre-existing illness exclusion contractual provisions for enrolled children later this year but there was a question whether guaranteed issue of health insurance for these and other children had to wait until after 2013. Nevertheless, the administration obtained a promise from private health insurers for guaranteed issue this year for this particular population notwithstanding what some believe are the words in the statute.

Successful implementation of the 2000+ pages of the federal health reform law requires collaboration between the Executive Branch and the health care industry stakeholders. This is because the law is based upon actions to be taken by key health care industry stakeholders, such as health insurers to increase access, and health care providers to achieve Medicare savings.

And since we never had a federal department of health insurance before this new law—health insurance had been regulated mostly at the state level—the Executive Branch’s need for continuous public input and collaboration with industry is even more compelling. The same is true for some of the creative new pilot programs designed to customize the Medicare payments for certain providers.

A big part of implementation is in the Executive Branch’s federal rulemaking activities. That is when the public has the formal opportunity to collaborate with the administration on federal health reform. Not all provisions in the recently enacted Patient Protection and Affordable Care Act (Pub. L. No. 111-148) and its companion, the Health Care and Education Reconciliation Act (Pub. L. No. 111-152), require a federal regulation. Some provisions are self-executing while others specifically require a designated federal official to publish regulations on a particular topic. For other provisions, it depends.

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The Kreeger Museum’s Great Hall. Photo by Robert Lautman, 2004.

By Judy Greenberg. Conversations at The Kreeger Museum: A Program for People Living with Alzheimer’s Disease and their Caregivers

On behalf of The Kreeger Museum, I am thrilled to announce the development of a new art program especially designed for people living with Alzheimer’s Disease (AD), their families and caregivers.  Modeled after the pioneering Meet Me at MoMA (Museum of Modern Art, NYC) program (est. 2006), Conversations at The Kreeger Museum will similarly provide a forum for dialogue and connection through looking at art.  Docents and other arts specialists will conduct small interactive tours and discussions through the museum’s accessible galleries and grounds. During the program, tours will have exclusive access to the museum’s great architecture, sculpture, and paintings on one designated day per month.  The program will be free of charge to not only patients suffering from the disease but also to caregivers and family members who often face significant medical, emotional and economic challenges as a direct result of this devastating disease.  Initially the program will provide art tours only. In future years, it is hoped that Conversations will grow to include art making workshops, outdoor garden walks and intergenerational components.

The Kreeger Museum is uniquely equipped to create a positive and beneficial experience for AD patients and their caregivers.  The museum is a private, non-profit art museum located in what was formerly the private residence of David and Carmen Kreeger.  The Kreegers were passionate about art, music, and architecture and about how these endeavors enrich, enliven, and enhance the human experience.   In the early 1960’s, they asked Philip Johnson to design a home for them that could be easily converted to a museum upon their passing.  After Mr. Kreeger passed away in 1990, we officially opened as a museum in 1994.

The building’s timeless elegance reflects the architect’s passion for and knowledge of history and architectural styles from many great cultures and traditions.  It displays the Kreegers’ permanent collection of 19th and 20th Century paintings and sculpture.  The nearly 200 works in the collection include paintings by Monet, van Gogh, Picasso, Cézanne, Chagall, Rodin, Mirό, Moore, Kandinsky, Léger as well as very fine examples of African and Asian Art.  Through our numerous contemporary programs and exhibitions, work by leading current artists, like William Kentridge, Sam Gilliam, and William Christenberry, is also displayed.

Although we are still in the development phase of Conversations, we have already forged partnerships with leading local institutions and service providers (The National Institute on Aging, the National Coalition on Creative Aging, Sibley Hospital and Grand Oaks Assisted Living, IONA Senior Services, and others) to deliver a distinctly rich and beneficial program.  We hope to be fully operational and offering tours by November 2010.

Please stay tuned here for future announcements and if you would like more specific information about the program please contact, Derya Samadi, Program Manager at Conversations@kreegermuseum.org or 202 337-3050 ext. 18.

The Kreeger Museum is located at 2401 Foxhall Road, NW in Washington, DC.  If you would like to make a reservation for a tour please contact the Reservation Office by email VisitorServices@kreegermuseum.org or by phone (Monday through Friday from 10:00 am to 5:00 pm): 202-338-3552.  For more general information, please check our website at www.kreegermuseum.org.

By Archelle Georgiou. On Wednesday, the FDA suddenly decided to impose their regulatory authority on personalized genetic test kits after Walgreens and Pathway Genomics announced they’d be selling them in local pharmacies. But, what triggered this response from the FDA?

Are they new? No. These kits have been available to consumers via the Web for 3 years.

Have they been off the regulatory radar screen? No. As far back as 2008, the rapid emergence of genetic testing fueled the passage of GINA, a federal law prohibiting health insurers and employers from discriminating on the basis of genetic information.

Have these companies been quietly launching their strategy and staying invisible? No. They have made major investments in marketing with an abundant amount of media coverage in women’s magazines and news shows.

So, why did the FDA choose to take a stand now?

Maybe the Agency was dealing with higher priority issues. The FDA is busy and constantly putting out other fires, resources are limited, and the number of people buying these kits off the Web has been relatively small. But, with the announcement that kits would available in 6000 local pharmacies, they may have been concerned about a surge in use and the need to fulfill their responsibility to protect the public. A “noble” act, I am sure.

But, were there other underlying forces? Who was nudging the FDA? And, why?

The American Medical Association recommends that “genetic testing only be made available under the supervision of a qualified health care professional.”

Hmmm… the most powerful lobbying organization within the traditional medical establishment believes that only clinicians should be the keeper of the keys to our personal DNA information. By the way, does “qualified” include mean nurses, pharmacists, and licensed genetic counselors…or is it really just a code word for “doctors?”

Is the AMA advocating for better health and the rights of consumers, OR…

….Are they trying to maintain a paternalistic status quo?
….Do they feel that doctors are relatively uninformed about the science behind genetic testing and trying to protect them from feeling unqualified to respond to questions when their patients come in with a 77 page report?
….Do they simply want to protect doctors’ revenue stream?

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By Hygeia. Several Disruptive Women in Health Care are very involved in the high tech or biotech space.  We thought it was important to let you know about this exciting program—one that is taking place in our backyard.  We encourage as many of you ladies out there with an interest in health, science, innovation and business to attend—we need to spread the estrogen around – there are many women in and out of the I-270 corridor who are making enormous contributions to these fields. Don’t let the men do all the talking—join the conversation and join us on June 1st.

Click here to see the full announcement. If the image in your browser appears small, click to enlarge.

By Liz Scherer.  A Twitter friend recently asked me about stopping hormone replacement therapy (HRT). It was a question that I hadn’t explored thoroughly although I write about HRT often on my blog. In fact, I had never truly considered the “what now” of the issue, as in, what if you decide to go off hormones or try alternatives after you’ve been on HRT?

Interestingly, when I looked into the issue, the answer seemed to be even less clear-cut than the therapy. In fact, there are no guidelines for stopping HRT.  Granted, until the Women’s Health Initiative started to reveal the dangers and risks of HRT, there was no real reason to stop therapy, (although, I’m of the mindset that there’s really no good reason to start HRT).

Fortunately, researchers are finally starting to look into this issue although study findings (which are published in the online edition of Menopause) highlight that the practice of stopping HRT is intuitive and not evidence-based.

So, what did they learn?

Among 438 group practice physicians surveyed, an overwhelming majority believed that women should taper HRT, with most believing that the best strategy was not only to slowly decrease the dose, but also to reduce the number of days HRT was taken per week. However, they had no suggestions with regards to how to taper use of HRT patches, even though the patch is increasingly being recommended and touted as a safe solution to oral hormone therapy. (Notably, like the evidence from this particular study I am talking about, the evidence that shows the safety aspect of the HRT patch is mostly observational, meaning that it is subject to personal bias.)

More interesting, however, was the finding that the majority of the physicians who participated in the study were more strongly influenced by their personal beliefs than by colleagues’ actions or most importantly, by a woman’s preference. In other words, physicians are not asking their patients about what they would like or if they have any thoughts about stopping therapy. More shocking was the fact that only 2% of physicians surveyed relied on actual evidence to stop hormone therapy. Physicians who indicated that they believed that some action should be taken if symptoms returned after stopping hormones overwhelmingly turned to behavioral changes or exercise, not to alternative therapies such as herbs.

In an era of evidence-based medicine and strategies that integrate eastern and western philosophies, why are our physicians relying on their own personal belief systems rather than real facts? Why aren’t they asking their patients how they feel about stopping therapy or if they have fears about symptoms returning and then thoroughly exploring alternatives ? Are these findings in a vacuum or will they be found on a broader basis? Does the problem lie in fact that there are no standards?  What’s more, why hasn’t the American Medical Association or American College of Obstetrics & Gynecology devised guidelines for stopping HRT therapy? Why hasn’t the Food & Drug Administration demanded this guidance in labeling?

Finally, why do we continue to play Russian Roulette when it comes to women’s health? Isn’t it time for a change?

Let’s start with HRT. There are a lot of folks out there who continue to espouse the benefits, deny the risks and ignore the facts. Clearly, this story continues to unfold. Unsafe medical practices are even more unsafe when they are not backed by evidence, right? Is HRT the exception?  What do you think?

[This post, appeared in part, on Flashfree on May 10, 2010.]

NOTE:  Disruptive Woman Sharon Terry is quoted in TheWashington Post article linked below. If you haven’t already done so, take a look at Disruptive Woman Dr. Archelle Georgiou’s post entitled Stop the Drama and Spit in which she shares her personal experience with genetic testing.

“Beginning Friday, shoppers in search of toothpaste, deodorant and laxatives at more than 6,000 drugstores across the nation will be able to pick up something new: a test to scan their genes for a propensity for Alzheimer’s disease, breast cancer, diabetes and other ailments. ” Click here to read the rest of The Washington Post article.

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By Stephanie Mensh. House and Senate Appropriations health subcommittees are in full swing this month. On May 5, the National Institutes of Health Director testified to the Senate subcommittee.

I follow NIH funding because they have a leadership role in understanding and treating cardiovascular and neurological diseases. For example, NIH sponsored the recently-reported landmark CREST study comparing surgery to stenting for patients with carotid artery disease related to stroke, conducted in 117 centers over 9 years.

NIH also sponsored historic research on the clot-buster tPA treatment that reduces morbidity and mortality in acute stroke patients when initiated within three hours of onset.  Stroke is the third leading cause of death and the leading cause of disability in adults. So, I assumed that a lot of privately-supported research was underway.

I was shocked and dismayed to hear Story Landis, Ph.D, Director of NIH’s National Institute of Neurological Disorders and Stroke (NINDS), tell the American Heart Association’s lobby-day lunch attendees that pharmaceutical and biotech companies are abandoning research into acute stroke and neuroprotective drugs that could extend the window for tPA treatment beyond three hours.

This means that NIH will be left to develop new treatments. Unfortunately, only 1% of the federal NIH budget goes to stroke.  President Obama’s proposed 2011 budget for NIH is $32 billion. I’m advocating for the American Heart Association/American Stroke Association’s recommendation that Congress appropriate $35 billion for NIH, so more grants can be made for stroke research.

My husband, Paul Berger, had a stroke 20 years ago at age 36.  Paul wouldn’t have qualified for tPA even if it was available back then because his stroke was the result of a ruptured aneurysm dumping blood in his brain, instead of a clot (80% of strokes are caused by clots).  I am very  encouraged to see NINDS support research into other treatments for the acute phase as well as post-stroke rehabilitation.

May is National Stroke Awareness Month. You can find information on stroke warning signs and risks posted to the NINDS website: http://stroke.nih.gov/ .

Even with emergency medical treatment, many stroke survivors will require rehabilitation and suffer chronic health problems—weakness or paralysis in arms and legs, difficulty with speech/language, and problems with everyday living skills.

Strokes affect people of all ages, including younger people who may lose their jobs due to stroke-related disabilities. The sudden, life-changing nature of a stroke impacts the survivor’s spouse and family as well.

To help make everyday better, my husband and I have written 3 new E-Books on stroke recovery just launched by Positive Power Publishing and  StrokeSurvivor.com:  (1) “Conquering Aphasia & Stroke TODAY!”; (2) “Conquering Aphasia & Stroke for Caregivers”; and (3) “Articles to Take With You.”  Excerpts and details are posted at: http://www.strokesurvivor.com/e-books.html.

Yin versus Yang. East versus West. Technology versus theology. Two Fox topics I covered within a single week were at seemingly opposite ends of the healthcare spectrum. Both were moving. Both made a meaningful difference in peoples lives. Which was better? I was confused…until I started writing the last paragraph of this blog.

Bill Carlson is a 60 year old man that I met online about a year ago during the weekly Fox chat with viewers. “Shellback,” his screen name, signed in every few weeks with progress updates on his recovery from a heart transplant…and then always commented on the wonderful care he received at the University of Minnesota. Since April is National Donate Life Month, I invited him to be a guest on Tuesday, April 20. His story was a medical miracle.

Bill’s congestive heart failure symptoms were easily managed on medication for the first several years that he was diagnosed. Then, in early 2008, his cardiac function quickly deteriorated and by September 2008, he was dying. His ejection fraction was 10%. He had multi-organ failure, gastrointestinal bleeding and was comatose. His family had decided to withdraw life support, but just in time, Bill stabilized and the University surgeons decided to insert an LVAD– an implanted mechanical pump that helps the ventricle pump blood throughout the body. If it worked, there was a chance he’d survive the wait for a donor heart.

Bill had a cardiac arrest during the LVAD placement. Unable to regain a heart rhythm, the surgeon found the family in the waiting room and told them the bad news: “I am so sorry. We lost Bill on the table.” He sat with the Bill’s wife and daughters for a bit then went back into the operating room to finish up. But, he came back twenty minutes later and said, “Don’t go too far. He’s alive again.” For the next nine months, Bill changed his LVAD batteries every four hours, and on June 7, 2009, his cell phone rang. A young man in Pittsburgh had just died. Then next day, Shellback got a new heart.

If Bill had end stage heart failure just five years earlier, he’d wouldn’t be alive. Technology had defied death. This was the yin. Health….from the outside in.
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