By Jessie Gruman. “Buck up. You are going to feel bad for a year.”

This was my chemotherapy nurse a year ago, returning a call I made to my oncologist. I had left a message asking whether there was something he could do to help me. Should I feel this horrible following three action-packed months that included stomach cancer surgery and aggressive chemotherapy? 

The answer, at least as far as my nurse was concerned, was “Yes.” 

And she was right. It did take a year to regain my energy and feel well again.

The new year set me reflecting about what I’ve learned about being sick over the past 12 months that only the experience itself could teach me:

You know that old Supremes song, “You Can’t Hurry Love”? I learned that you can’t necessarily hurry healing either, even if you work hard at it. A week after that call to my oncologist – still feeling rocky – I joined a local gym’s “$30 for 30 days” New Year’s special to try to revive my cardiovascular fitness. For each of the next 30 days, I trudged down there, got on that Nordic Track machine and forced myself to flail about for 40 laborious minutes. On most days last year, I made myself walk at least a mile and practice yoga. I did my level best to choke down a tiny healthy snack almost every waking hour. Often, doing these simple tasks took all the energy and will I possessed. But I was committed, convinced that if I did them, I would get better faster.

And it still took a year before I felt normal again. How frustrating was that?

I have absorbed the very American notion that success results from hard work. By extension, health should be achievable if we comply with the admonitions of our employers, the media and health promotion advocates to exercise and eat right. I knew that my behavior didn’t cause my cancer and wasn’t going to cure it. But surely, I thought, I can speed up my recovery from the assault of chemotherapy and surgery if I really try. I had great expectations. So did those around me: “Why is she still so frail?” “Why isn’t she better yet?”

I might still be feeling pokey if I hadn’t worked so hard at recovering. But this experience slammed me up against the reality of physical illness and the limits of behavior in changing its course. It reminded me how a deep belief in our own efficacy makes it easy to slip into blaming ourselves (or the sick person) for not getting better. And it reminded me of how unruly, unpredictable and often uncontrollable the effects of disease and its treatment are on our bodies.

Another lesson: I expected that Health Information Technology (HIT) advances and opportunities to connect with other patients using social media would dramatically change my experience of treatment in contrast to my previous three experiences with cancer.

I was dazzled by the ease with which I was able to collect the information and evidence I needed to make good decisions about my treatment plan. And I am grateful for online access to friends and colleagues all over the world that allowed me to feel less isolated over this past year than I have during previous illnesses.

But once I started treatment, feeling ill extinguished my curiosity about my disease. It dampened all interest in second-guessing treatment decisions or seeking innovative approaches or learning about new technologies to aid my recovery. And only occasionally could I summon the energy to reach out even to close friends and family, much less to seek out people like me online for advice and support.

I see embedded in the enthusiasm about patient portals, decision aids and smart phones an attitude that being actively engaged with new technologies can somehow provide happy relief from the pain and discomfort of illness. Bright health information Websites, fun games designed to inspire adherence and smart medication reminder apps are presented as having the potential to turn the experience of illness into a series of problems that are easily solved through the acquisition of the technologies.

It’s true that HIT can help with scheduling appointments, refilling prescriptions and coordinating the disposition of test results to different clinicians, for example. (My clinicians mostly don’t use electronic health records with patient portals, so I had no respite from those tasks). And remote patient monitoring and assistive devices already make some caregiving chores easier. These are welcome contributions, especially as more responsibilities for care are shifted to patients and their families. But I return to the world of the healthy with the impression that the value of HIT is tactical, not transformative, at least for the sick person: the suffering remains.

My third insight from the past year is that most of the time I believed I was thinking clearly but in hindsight, I see that my judgment and thought processes were often clouded. Through my experience with serious illnesses, I’ve developed strategies for getting through the days. For example, regardless of how I feel, I always bathe, dress, eat breakfast and put my shoes on. The shoes were important: they serve as an optimistic signal to myself that I’m well enough to get up and go outside just like anyone else. Between the shoes and my exercise/diet routine, I could sometimes convince myself that I had returned to my former healthy state (conveniently forgetting my need to lie on the couch for hours).

But I had not recovered, and the clarity of my thinking was often – although not consistently – compromised. I scheduled events and travel that were unrealistic, given my stamina, and when I couldn’t be dissuaded from following through, I’d spend days recuperating. Again and again I disappointed myself (and others) by setting ambitious goals for commitments I couldn’t meet.

I know I am not unique in this. I watch friends and colleagues whose judgment is impaired by illness make similar, often higher-stakes errors. They make weird self-care choices, abruptly change treatment decisions, fire their physicians and refuse to seek advice about clearly serious conditions. We all believe that we are making rational choices when we do these things. But we aren’t, and the impact on our health and recovery can be serious.

I wanted to write about these three insights while they are still vivid for me. Standing for the past couple months on the shifting border between illness and health, I’ve experienced how (fortunately) easy it is to forget how illness eats away at the balance of one’s mind, body and spirit. As a mostly ill person glancing into the world of the healthy over the past year, I’ve marveled at the insensitivity and indifference to this imbalance by even those with the greatest love, or best intentions, training and experience.

The tools, technologies and services that constitute health care will never completely eliminate the suffering caused by illness, even if they are perfectly delivered. But that suffering might take a more modest toll if all of us – patients, professionals, caregivers, family, friends and colleagues – have clearer expectations about the arc of illness and how it affects and can be affected by each of us.

In the end, that curt directive by my chemotherapy nurse to “Buck up. You are going to feel bad for a year,” was the most helpful advice I received.

A health care system predicated on acute illness and injury is not equipped to meet the long-term, ongoing needs of people who have multiple chronic conditions—a situation Boomers will face. In short, it’s a disaster we know will happen, but whose impact we might, with planning, lessen.

So how could we prepare? We might take a page from the Federal Emergency Management Administration (FEMA), which, in the aftermath of Katrina, stepped up preparedness planning. Indeed, it  has outlined eight principles of disaster management. These principles will sound familiar to anyone interested in creating a better health care system. According to the disaster planning experts, good plans are comprehensive, progressive, risk-driven, integrated, collaborative, coordinated, flexible, and professional.

These principles will sound remarkably familiar to anyone enaged in public health and health care. Where today America has fragmented, uncoordinated systems of care, we need a future in which coordinated, comprehensive care is the norm. Where today there are unconnected silos of activity, we need to foster improvements that lead to collaborative systems, ones in which each participant knows and understands how, when, and why to interact with other elements of the system.

America needs a progressive system, in which, in the words of FEMA, “managers anticipate future disasters and take preventive and preparatory measures to build disaster-resistant and disaster-resilient communities.” Mapped to the health care system, a progressive system would mitigate the ways in which things go wrong in our current system, fix those errors, and learn from them to prevent their recurrence.

In terms of being risk-driven, the health care system needs communities that know how to assess their strengths and weaknesses, understand their risks, and plan accordingly. We need a flexible system, one that is just as effective at caring for a dying patient as it is at caring for a newborn; we need systems that work, regardless of a patient’s prognosis or diagnosis. And we need a skilled and professional workforce that is ready to deliver the care individuals and families will need.

Disaster preparedness plans are built on actual experiences. The catastrophes of recent years, from 9/11 to Katrina, showed planners just where our weaknesses and vulnerabilities lay. Using experience as a guide, disaster planners quickly learned how important it is to forge community alliances and to organize interaction among groups that don’t usually talk much. Planners routinely conduct tabletop exercises and real-time simulations, so that people can experience what it is they would need to do when disasters hit. Along the way, planners develop and cultivate public interest and trust through communication campaigns. We’ve stocked up on batteries and plastic sheeting, water and dried goods; we’ve had to learn to trust our leaders when they tell us to shelter or seek higher ground. And we’ve developed a sense of neighborliness, the notion that we need to help each other.

Recent efforts to improve care transitions – the time when patients move between hospitals, nursing homes or home, offer a promising glimpse at how better planning might lead us to better outcomes. In this arena, care providers who rarely interact have learned to do so, and develop and standardize processes that work for everyone. The hope is that improved transitions will lead to less fragmented care, more continuity of care, and better coordinated care. Improving these factors could improve care in general.

The emergency preparedness literature talks about the problem of apathy, and how it prevents individuals, organizations, and communities from really taking the steps necessary to prepare for any sort of hazard.

In planning for the tsunami of aging Boomers, we will also have to overcome apathy and inertia, the very-human belief and hope that bad things won’t happen to us, or that we are likely to continue as we are forever. We won’t: life is 100% fatal. And those of us who will move into old age will find our current systems and policies will make old age more difficult than it should be. As a society, we could and should prepare for the eventuality. Unlike natural disasters, the coming crisis of aging is entirely predictable: We know what dangers lie ahead. Now we must work – and plan —  to avert them.

I have a number of friends who are battling MS, one of whom, Amy Gurowitz, shared a link on Facebook the other day to Jim Sweeney’s online empire of improv humor and chronic disease. Jim’s MS journey started with vision problems in 1985, he was officially diagnosed in 1990, and has been dealing with the disease – finding the funny most of the time – ever since.

Jim’s body of work includes decades of live improv, his one-man show “My MS & Me,” which you can hear on the BBC Radio 1 site. His MS has progressed to the point that he’s now in a wheelchair, and his public presence is mostly limited to Twitter, where his profile describes him as a housebound hedonist (hey, it made ME laugh) and YouTube.

How much courage does it take to laugh out loud, in public, at an incurable disease? Jim certainly has courage at the level required.

Other examples of funny-or-die in managing chronic disease include Mark S. King’s fabulously funny My Fabulous Disease blog (Mark is HIV-positive). The aforementioned Amy Gurowitz laughs out loud about her MS in a number of places, including MS Soft Serve and MS-LOL (life of learning OR laugh out loud, you pick).

On the provider side, there are a number of docs who are breaking up the waiting rooms and wards.

Dr. Patricia Raymond is a gastroenterologist whose mission in life is to take the “ick” out of colonoscopies. She bills herself as The Fabulous Butt Meddler. Since she looks like Bette Midler, the joke works on every level.

Dr. Zubin Damania, a/k/a ZDoggMD (“Slightly Funnier Than Placebo”), is a hospital medicine specialist in Palo Alto as well as a veritable buffet of medical humor, some G-rated and some most definitely NSFW. His videos alone guarantee hours of laughter.

There’s an entire site dedicated to clinician humor called GiggleMed.com – both ZDoggMD and Dr. Butt Meddler are featured there, along with a host of other find-the-funny MDs and RNs.

I even found a scholarly article entitled The Use of Humor to Promote Patient Centered Care – be warned, though, that (1) it’s a “scholarly article,” meaning that it’s probably had all the laughs surgically removed and (2) they want $34.00 for it. You have been warned.

What’s my point here? I actually have two:

1. Laughter really is the best medicine. Humor keeps us in touch with our humanity, and – unless it’s insult comedy, which I do not recommend in the health care arena, unless it’s insulting bad health care – it helps to comfort others in the same situation.
2. Patients and providers need to work together to help each other find the funny. If you’re a doctor, don’t just say “you’ve got [insert dread diagnosis here], here’s the treatment plan, call if you have any questions, … NEXT!” Look your patients in the eye, and channel your inner comedian whenever it’s appropriate. If you’re a patient, connect with other people in your situation and see how they’re finding the funny. And help your doctors find their funny. If they can’t find it, you should find another doctor.

We all need to work together to break each other up. Laughter can comfort, can calm, it can even heal.

That’s real disruptive health care, no prescription required.

She has epilepsy and since November is Epilepsy Awareness Month, this is the perfect time. Please allow me to introduce you to Jessica Keenan Smith.

How do you hope Epilepsy Awareness Month will help?  

More than 70 Million children and adults worldwide are living with epilepsy. Three million of them are in the US. That’s more people than were living with HIV/AIDS in 2008. I’ll bet that surprises most people.

Of those 70 Million, for 70% there is no known cause. A little research money would go a long way toward reducing that 70% number and then to finding better treatments, and my highest hope – cures. More awareness will help drive more research funding and scientific  interest in this important area of health. That’s why an Awareness Month is helpful.

Many diseases have been around for centuries, but they have treatments – even cures. Why hasn’t epilepsy enjoyed that same happy ending?

Well, let’s start with the fact that you can’t even tell that most people with epilepsy have it unless they are actively having a seizure. Then combine this with the fact that a negative stigma still exists. Add in the fact that there are more than 40 different types of seizures and you’ve got a tough nut to crack.

These factors make epilepsy very difficult to recognize, never mind research and cure.

October is the month we focus on breast cancer awareness. I was stunned at your comparisons between epilepsy and breast cancer.

So was I when I first learned about it. I was surprised to discover what we do know – that is, the prevalence and mortality for epilepsy – are the same as for breast cancer. It means that each year in the US 200,000 people are diagnosed with of breast cancer and that is the number diagnosed with epilepsy as well.  It means that each year 45,000 people die from breast cancer and the same number die as a result of seizures.

Yet, the national research funding for breast cancer is five times greater than for epilepsy. An awareness month can help bring some more equitable spending to the national research venture.

How have you been able to be such a presence and use your voice on behalf of those with epilepsy?

Increasing awareness about epilepsy and providing a voice for the people who struggle with it are what I am passionate about.  It took lots of work to get to this point.

As a woman with epilepsy, it took me a long time to get out from behind the stigma. I was diagnosed more than 25 years ago but it wasn’t until recently that I began actively speaking out.  That’s when I founded Living Well With Epilepsy.

I shouldn’t let it go without saying that my husband and daughter support me in continuing to use my voice in this way. When I’m working on a project, they have to remind me to do the laundry or walk the dog – but they do it with a gentle ribbing instead of getting mad. I’m just so lucky to have them.

If readers want to take some action during Epilepsy Awareness Month, what do you suggest?

There are several things they might do and I hope they will:

• Go to the Living Well Gear Shop (cafepress.com/livingwellwithepilepsy) to get epilepsy awareness gear.  The proceeds from the shop go toward epilepsy awareness and research.
• Support a local Epilepsy Foundation.
• Write to local, state and national government officials and representatives about the importance of epilepsy research funding.
• Check in with Living Well With Epilepsy at http://livingwellwithepilepsy.com). There’s so much more to come throughout this month and I’ll be posting it there.

I’ll confess that I’m not exactly sure what to do if someone has a seizure.

That’s common. Even if people have heard of epilepsy, they seem to always be at a loss for what to do when someone has a seizure. Part of the reason is that directions on how to handle a seizure are not included in Red Cross, work- or school-related first aid classes. In general, only those with EMT, nursing, paramedic or medical education backgrounds know. In fact, I’d like to know how someone like me could go about turning that ship around. Until they do change their courses, here is what you should know:

• Don’t put anything in their mouth.
• Remember the 4 C’s: stay Calm, Clear the area, Comfort the person, and Call 911.

Thanks Jessica. 

In addition to being a wife and mother, Jessica also has a day job. Today’s posting gave me the chance to introduce her. She writes, blogs and is an expert in niche marketing. Her site http://livingwellwithepilepsy.com has become resource for people all over the world affected by epilepsy. If you want to know her better, she can be followed at http://twitter.com/#!/jessicaksmith and found at https://www.facebook.com/livingwellwithepilepsy. She can also be found at www.Feministing.com, www.Disaboom.com and other news outlets. Her original epilepsy awareness designs can be found at Living Well Gear Shop. To connect across social media you can find her on @jessicaksmith, Facebook.com, and LinkedIn.com and she can be reached at livingwellwithepilepsy@gmail.com.

I know, I know it’s October…but hey, we are disruptive so celebrating on the exact day seems so well, ordinary.  And the past three years have been anything but ordinary.  We all had something to say about the new health reform debate and ultimate passage.  We still have much to say about the new law, as well as a multitude of other topics.

One area that I have been thinking a lot about is the exploding area of mhealth (mobile health), remote monitoring, and telehealth.  Technology alone is not the answer of course.  But technology, coupled with innovative care delivery models (think health reform), and patients, caregivers and clinicians more comfortable with smartphones, apps, data sharing and online connectivity have all contributed to a new framework of health and wellness.  Aging in Place, staying connected, eICUs, PHRs and EHRs.  Exciting stuff.

But, like most solutions in health care, success must look beyond the health sector.  Here’s what I mean by that: staying healthy can’t just take place in a health setting or even in your home.  Maintaining your health and wellness or managing your chronic disease or disability requires a connection where ever you are — in other words, Health In Place.  Young people with epilepsy and diabetes still attend school, go on vacation and use public transportation.  Elderly individuals aging in place still travel to visit gradnchildren. And, adults maintaining exercise and nutrition regimens who travel for work need to stay connected to maintain wellness.  The Health In Place concept takes this broad view and will be bringing together thought leaders from not only the health field, but the telecom, travel, automobile and real estate sectors as well. 

The organizers of the 2011 mHealth Summit were so taken with this idea that they invited Disruptive Women to launch the Health In Place or HIP initiative with a reception on December 6th–we couldn’t be more thrilled or more flattered. So SAVE THE DATE:

Health In Place (HIP)™ — Disruptive Women in Health Care is Launching a New Initiative

Tuesday, December 6, 2011, 5:00–7:00 PM
Location: Pose Ultra Lounge & Nightclub–at the Gaylord Hotel in National Harbor (Washington DC)

Overview: The concept of Health In Place™ is built around the idea that our homes are more than just homes, our offices are more than just workplaces, our schools are more than just places of learning, and even our cars are more than just modes of transportation. Thanks to wireless communications and emerging technologies, each of these venues has become potential health and wellness centers or HIP. No matter where we are or what we’re doing, we can be protecting and enhancing our well-being. For this facet of 21st century health care to achieve its full potential — for more Americans to have the tools to link to their caregivers, to protect against and manage illness, while monitoring their well-being — a number of public policy issues are involved, cutting across multiple disciplines from health care regulations and benefit structures to tax policy to technology incentives. That’s why Amplify Public Affairs and the Disruptive Women in Health Care® blog (along with our media partenr, The Hill) have formed the Health In Place™ Initiative — to bring together policymakers and change agents from multiple industries.

 Please join us as we unveil this new initiative.

 Speakers:

• Robin Strongin, President & CEO, Amplify Public Affairs & Creator, Disruptive Women in Health Care — Moderator
• John Marttila, President, Marttila Strategies (a national polling expert)
• John C. (Jack) Lewin, MD, Chief Executive Officer, American College of Cardiology
• Pamela Cipriano, PhD, RN, NEA-BC, FAAN, Professor, University of Virginia School of Nursing, Editor-in-Chief, American Nurse Today, 2010-11 Institute of Medicine Nurse Scholar-In-Residence (and a Disruptive Woman blogger)
• Halle Tecco, Founder & Managing Director of Rock Health (and a Disruptive Woman blogger)

Stay tuned for more information.  And by all means, please come out on December 6th and celebrate with us.

At three years of age, we are not only Disruptive, we are also HIP.

Caregiver supports are defined by the Scorecard to include:

• Percent of caregivers getting needed support
• Legal and system supports for caregivers
• Health tasks able to be delegated to aides.

The Scorecard showed that 77% of family caregivers who were surveyed a few years ago reported that they get emotional and social support when they need it.   Legal and system supports scores were much lower, averaging a “3″ on a 12-point scale. These supports  were defined as:  state family medical leave laws;  mandatory paid family and sick leave; protection of  caregivers from employment discrimination; the  extent of financial protection for the spouses of  Medicaid beneficiaries who receive nursing home or  long term community support services; and  assessments of the caregiver’s health, quality of  life, etc.    The researchers also proposed that family caregivers would benefit if state nursing license laws permitted aides to perform a list of key “health maintenance” activities, such as administering medications, and diabetes testing and injections.

You can view your state’s score on the Scorecard’s  interactive website at: http://www.longtermscorecard.org/

We live in Virginia, so I looked up my state’s ranking  among the 50 states and D.C.

• Overall, Virginia somehow ranked a 12 out of 51.  Minnesota was #1, the best in the country. Mississippi was #51, the worst.     I think Virginia’s high overall rank was skewed  by the high ranking for “affordability,” which in  itself is a little misleading. Nursing home annual  costs were “only” 196% or about 2 times annual  median income in the state, and annual home health  costs “only” 70% or about 3/4ths of annual median  income.
• Virginia ranked 16th for our State Medicaid  program giving choice of setting and provider; and  25th for quality of life and  quality of care.
• Virginia did not do so well in its “Support for Family Caregivers,” ranking 44th in legal and system supports–a dreadful 1.6 on a scale of 0-12.  I guess we’re a friendly state (our motto is  “Virginia is for Lovers”), because 81% of  caregivers said they usually get needed emotional  support.

AARP and the other Scorecard developers hope that consumers will use this data to push their state governments to do more to provide long term services and supports in the community, mostly funded by the federal-state Medicaid program.

Meanwhile, Medicaid program funds have been targeted as a potential source of cut-backs by the House-Senate special deficit reduction super-panel.   AARP and 70 other volunteer groups supporting people with disabilities will be holding a rally, “My Medicaid Matters,” at noon on Capitol Hill in  Washington, DC, on Wednesday, September 21.  Details at: http://www.adapt.org/main/medicaid_rally

I plan to send the link to this Scorecard report to my elected officials and ask them to help improve community services.

“My doctor can titrate my chemotherapy to the milligram but can’t tell me when I am going to die,” a friend who was struggling with his treatment for cancer complained to me a couple years ago.

Had he lived, he might have been reassured by the announcement last week of a new scale that allows clinicians to estimate the time remaining to people with advanced cancer.  He was spending his final days “living by the numbers” of his white blood cell count, the amount and size of his tumors and suspicious lesions, the dosage of various drugs and radiation treatments. And he was peeved about what he saw as a critical gap in those numbers.  He believed (hoped?) that because his cancer was quantifiable and the treatment was quantifiable, that the time remaining should be similarly quantifiable.  He needed that information to plan how to use the time that remained.

Many of us would make a different choice about knowing how long we will live when we are similarly ill.  But most of us are attracted to the certainty we attach to the numbers that precisely represent aspects of our diseases.

It is not just when we are seriously ill that numbers dominate our experience with health care.  Advances in technology have made it possible to quantify – and thus monitor – a seemingly infinite number of physiological and psychological health-related states. For instance: weight, blood pressure and cholesterol level, hemoglobin A1c level; the range of shoulder mobility; the size of a hernia; the risks discovered when we undergo genetic testing during pregnancy; the probability of developing diseases based on our smoking, physical activity and bike helmet-wearing; the amount of pain or sadness we feel.

Most of these numbers represent a marker that is potentially modifiable by some action we can take, often with guidance from and in collaboration with our clinicians. But while a change in a number may affect the course of treatment or indicate a higher or lower risk, it doesn’t guarantee a certain effect or outcome, as much as we would like it to.

These few familiar examples represent only a tiny fraction of the health-related numbers that compete for our attention over the airwaves and online. We can purchase a whole raft of numbers about ourselves by getting a full body scan or having our genome read.  Apps on mobile devices and various bands and devices allow us to monitor every heartbeat, every breath, every fluctuation in sleep, attention and anxiety.  And practically every month will bring something new for us to measure.

What do we do with all these numbers?  Are all of them important?  Are some more important than others?  If so, which ones?

We vary widely in the amount and type of information we want about our health. If we are to benefit from the health care available to us, all of us need to be acquainted with the top few numbers that are relevant to our specific situation and history. We should understand the numbers that put us in particular danger of illness or injury, and for which there is an action we can do (or can be done to us) to improve them.  We need guidance from our clinicians to separate the wheat from the chaff over time: today as I decide about getting a mammogram, next year when I get a new diagnosis, and afterward, as I make my way through treatment. Which numbers are imperative that I attend to, which are optional and which are irrelevant?

It may be the allure of health-related numbers comes less from the specific information they convey than from the illusion they support: that the practice of medicine is governed by empirically based algorithms, with effective strategies that can be used to “manage” the numbers, thereby reducing or curing the disease or symptoms.  My friend who was annoyed by his doctor’s inability to tell him how long he had to live shares with all of us the desire for predictability and perceived control of our health and illness.  So just what’s wrong with maintaining this illusion that numbers represent medical certainty?

Because while those numbers may spark the curiosity of some, the certainty imputed to them extinguishes it in many of us. Why should I be an active participant in my medical care and question my clinician’s approach, explore different treatment options, or maintain vigilance about medical errors, for example, if health care is as clean, scientific and exact as these numbers seem to imply?  The reality is different and it can be frightening, especially when we are ill. Despite the growth in knowledge about health and disease, gaping holes remain; clinicians piece together bits of evidence and experience to formulate treatment plans.  Often, there is no single right answer or solution.

Our challenge is to not be seduced by the false certainty of health-related numbers, but rather to see numbers as potentially valuable tools – but just tools, not guarantees — each of which may help shape our actions and those of our clinicians in our shared effort to make the best possible use of the services and technologies available to us so that we can live as well as we can for as long as we can.

My friend who wanted an estimate of the time remaining to him wasn’t looking for a promise that he wouldn’t die.  He was interested in figuring out how to fit in all the life he could into those few days or, as it turned out, meaningful, bittersweet but pain-free weeks.

By Janice Lynch Schuster. When I was a little girl, country singer Glen Campbell had a variety show on television called “The Glen Campbell Good Time Hour.” As I remember it, it was a good time; in my young imagination, I often confused him with my father, who I thought was just as handsome and talented and fun as Glen. I loved his songs and wanted to learn to play guitar so I could be more like him.

Sadly, Mr. Campbell has been diagnosed with Alzheimer’ disease. As most people know, Alzheimer’s is the primary cause of dementia, a gradual loss of brain function that becomes more common as we age. As the disease slowly and insidiously strips us of our thoughts and memories, it strips us of our lives and torments our loved ones in a grim process that can take years to unfold. Mr. Campbell’s decision to put a face on this awful disease by continuing to tour is a mark of real courage and heart. I don’t know how long he’ll last on the road—and early reviews, pre-diagnosis, panned him for being so forgetful and bumbling—but I hope that road takes him into some kind of good night, Rhinestone Cowboy.

Not many celebrities let us come so close. In our wild pop culture pursuit of public figures, we are eager to hear the details of their private lives—we buy up People and Star and Us by the ream. We want to know who’s pregnant, who’s with whom, who’s sleeping where, who’s in rehab, and who’s out. We want to hear about celebrities’ brave battles against one illness or another—bipolar disease or addiction, cancer or diabetes. We are thrilled when a gaunt but apparently cured Michael Douglas emerges from chemotherapy. We are sad when Patrick Swayze falls to pancreatic cancer.  And we cry when Clarence Clemmons succumbs to a stroke. We collectively mourn the deaths each week of various celebrities whose lives, we think, touched our own.

But we don’t really want to know the details of stars’ final months and days. Christopher Hitchens’ extraordinary essays in Vanity Fair notwithstanding, we don’t want to hear public stories of what it’s like to live with—and die of—a chronic, serious illness.  We want stories that are about youth and beauty—or, at the very least, stories that wrap things up in a comfortable ending. It would make us too sad, too lonely, too mortal to hear more about what is likely in store for each of us: Months or years living with a disease that will prove fatal. I worry that we aren’t able to tell these stories, or bear witness to them, or acknowledge the long and difficult journey that is, in fact, in store for most of us.

Absent such public telling of deeply private moments, we have no cultural framework from which to think about what it means to live with a bad disease for a long time. For the most part, the stories we see on television or at the movies are full of sudden and violent death, or conclude after a compact two-hour drama with sweet deathbed scenes in which everyone says goodbye and the eyes close. For most of us, it’s not going to be like that: We will instead live for many years with chronic and debilitating conditions that will render us increasingly dependent on others for our care.

Without stories of the reality of chronic illness to draw upon, we wind up stuck in our death panel absurdities and our assisted-suicide debates. We reach a time when a loved one is suffering from a serious illness and we throw up our hands because we haven’t a clue what to do. We have no images or stories or collective narrative from which to draw. And so we end up enduring one of the most difficult of life’s transitions alone, and making it up as we go along. Too many of us, patients and families, find ourselves isolated and frightened, abandoned by our communities.

When I tell people about my work writing about what happens at the end of life, they inevitably tell me their stories about their mothers and fathers, their grandparents and extended family. They talk about how lucky they were to have good pain control, or how horrifying it was to listen to a loved one struggle to breathe. They describe their uncertainty and their fear. What a difference such shared stories might make for people facing the end of life. Such stories might give us a way to navigate these profoundly private transitions while understanding that we are not alone in the journey. They might give us a platform from which to discuss larger and more important issues of society and culture, of how we will care for one another as millions of us grow old together.

Watching Glen Campbell tour might not be the best story of the year, but it will certainly be among the most poignant. It may be excruciating for his family and friends, but it may also give the rest of us some insight into what we face and some sense of the kinds of policies and social constructs that we need to navigate this new territory. I hope, for Mr. Campbell’s sake, that the Rhinestone Cowboy finds peace and relief from his suffering. In the meantime, I hope the rest of us learn how to talk about the end of life, and talk with purpose and meaning and real understanding. Once we start that conversation, we might find ways to construct programs and policies that support us through the difficult passages we all will face.

Women for a Healthy Future

Non-communicable diseases (NCDs), commonly known as chronic diseases, cause two out of three deaths worldwide, and are the leading cause of death for women around the world.

We have a once-in-a-lifetime opportunity to tackle NCDs, considered to be one of the 21st century’s greatest health and development challenges. In September, world leaders will gather at the United Nations (UN) for a historic summit on NCDs. The decisions they make will impact the lives of millions.

NCDs threaten women’s lives and our children’s future. Yet, we know that 80% of cardiovascular disease and diabetes and 40% of cancers can be prevented by avoiding tobacco, increasing physical activity and eating healthy foods. It’s going to take strong commitments from the world’s leaders and sweeping policy changes to reduce women’s and children’s vulnerability to NCDs.  

As a result, organizations representing global health, women’s health, child rights, and youth perspectives have come together to form the Women for a Healthy Future movement. This movement is aligned with UN Secretary-General Ban Ki Moon’s “Every woman. Every child” initiative and is mobilizing women from around the world to demand action against NCDs.

Raise your voices. Sign the petition. Tell your friends.

If we gather 10,000 women’s signatures, we will take them to the media, to world leaders gathered at the UN, and to business leaders. We need your support to show the world how deeply we care, and to ignite action against NCDs.

The challenge is designed for fast learning, so that innovators can create the needed service solutions for people living with diabetes. It brings together the richness of open data sets made available on healthdata.gov, the values of human-centered design, and the leading edge methodology of the top innovation accelerators.

Until July 31^st, innovators can submit their concepts on www.datadesigndiabetes.com.  In early August, an independent panel of expert judges (listed below) will review the submissions and five semi-finalists will be awarded $20,000 and professional mentoring to turn the concept into a prototype. In early September, the five teams will present at a demo day.  An open panel and our judges will select two finalists to receive an additional $10,000 to pilot their prototype in a real life diabetes community.  The findings and learnings from this exercise will inform the selection of a final winner who will receive an award of $100,000, along with a one- month stay at the RockHealth incubator in San Francisco to turn their prototype into a full, real solution for people living with diabetes.

Judges include:

• Jeff Hammerbacher – Founder and Chief Scientist, Cloudera
• Manny Hernandez – Founder, TuDiabetes
• Hilary Mason – Chief Scientist, Bit.ly
• Todd Park – CTO, U.S. Department of Health and Human Services
• Sue Siegel – General Partner, MDV-Mohr Davidow Ventures
• Ida Sim – Director, UCSF Center for Clinical and Translational Informatics
• Dennis Urbaniak – VP U.S. Diabetes, sanofi-aventis

Diabetes is a chronic, progressive disease that has reached epidemic proportion, with 100 million people in the U.S. currently living with diabetes.  At this rate, the CDC estimates that by the year 2050 1 in 3 Americans will have diabetes. 

Visit www.datadesigndiabetes.com for more information, including criteria, official rules and deadlines.  For more updates, follow Data Design Diabetes on Twitter and Facebook.

Shelia Rittenberg

Overhauling health care… deepest budget cuts in history… A moral battle framed around health care reform…

These are only a smattering of the emotionally charged messages inundating ordinary citizens in America. How do people stay engaged and believe in the work of the country? How do they avoid being jaded about health care reform when politicians toss around accusations and critiques about policies and the people who propose them the way we might toss a ball around with our kids?

I have always believed in the power of bringing people together and connecting them in a meaningful way to those who are creating policies for the rest of us. It’s no different when it comes to health care policy. Here at the National Psoriasis Foundation, we practice “The Three A’s” – Action, Authority and Accountability. Keeping our constituents engaged in relevant issues and problem-solving achieves a spirit of action and purpose for everyone concerned. Leveraging that advocacy helps unify “grassroots” and establish credibility and authority as the voice of the community. Communicating these successes demonstrates that our organization is accountable for the public policy changes essential to our people.

The results of bringing “ordinary people” to talk to policymakers can be profound. There is a transformative power of this work we call advocacy. In our world of psoriasis, there are countless triumphs: the woman meeting with her legislator for the first time who told me she would never look at her psoriasis the same way again; the retiree who has re-invented himself at age 70 as a firebrand psoriasis political activist; the 16-year-old who changed career plans after testifying in Washington, D.C., on behalf of the pediatric psoriasis population. The point is, taking charge through Action, Authority and Accountability can change a person’s life — and society, at the same time.

For people managing a disease, speaking up for their patient community – whether at the nation’s capital or in their lawmakers’ home offices – creates a shift in how people even think about their disease. A person taking political or social action moves from someone held captive by a disease to someone taking the reins with a mission to change limitations for that patient community. Not only do these advocates grow as confident, empowered people but they also successfully effect change on a macro level, benefiting countless others with the same disease.

Transformative qualities of advocacy in organizations

The same process of empowerment holds true for organizations. Taking on the key issues challenging their constituencies, organizations embracing advocacy are noted for their vibrancy and relevance. Engaging people in action builds allegiance to a cause, aligns the organization with issues that matter and empowers people on a personal level.

The National Psoriasis Foundation engages thousands of people around the country who struggle with the challenges of psoriasis – a chronic and alienating disease that affects 7.5 million people in the U.S. Psoriasis is typically misjudged and minimized as a mere rash, when in fact, it brings physical pain, limits normal functioning, and causes embarrassment and isolation because of stigma associated with it. Up to 30 percent of people with psoriasis develop psoriatic arthritis, a disabling form of arthritis. There is an increased risk for those with psoriasis to also develop other serious diseases such as diabetes, heart disease and stroke. 

About 60,000 people with psoriasis engage with the Psoriasis Foundation every year to raise their voice in support of better health policies. Hundreds of those are actually advocacy leaders, participating in delegations to Capitol Hill, going to town hall meetings of their lawmakers and visiting their legislators at home on congressional recess. Thousands of this “action network” also participate in the Walk to Cure Psoriasis, act as mentors to others and raise funds in a variety of ways for psoriasis research. 

How do we do it? We follow three key principles for successful advocacy:

Principle #1:  Effective volunteers and grassroots action will make or break the advocacy program.

The real battleground for winning political causes and effecting change in public policy is often at home where constituents are – not in Washington, D.C.

Principle # 2: Good relationships with members of Congress are critical.

Working with elected officials and other policymakers is no different than interacting with customers, business partners, your child’s teacher or your co-workers: It’s about cultivating relationships based on credibility and trust.

Principle #3: Expand Web-based resources to support grassroots advocacy.

A Web strategy and strong online presence are the most important investments you can make in building grassroots advocacy.

Implementing these principles brings people and their organizations closer to the three A’s– Action, Authority and Accountability. Taking action – contacting members of Congress, making visits, writing letters – is sustenance. In a way, it’s the fuel that drives the engine because people are taking charge of their community’s problems. The empowerment they feel as a result is, simply put, healthy.  The same holds true for the organizations that represent these people – by taking on the key issues challenging their constituencies, organizations become vibrant and relevant.

While the passage of ACA last March has improved this for many people in this situation, there are still condition-specific problems regarding insurance coverage and reimbursement that desperately need addressing.

Adi Renbaum

I recently sat down with Adi Renbaum, Senior Vice President of Health Policy and Reimbursement for The Neocure Group regarding one such issue –addressing the need of nearly half of patients with diabetes who do not make a yearly trip to the ophthalmologist. How could this be accomplished? By allowing primary care physicians to perform eye exams for diabetes patients right there in their offices via retinal imaging (capturing a digital retinal photo) and transmitting the image to an ophthalmology-based reading center for review and feedback. Adi has, in one way or another, been involved in this issue for the past decade and has seen the highs and lows of the struggle to compel insurance companies to acknowledge the need, and cover retinal imaging exams performed by primary care providers, and then reimburse physicians for these exams at a reasonable rate.  What follows are all the gritty details of this particular issue summarized from my conversation with Adi.

Several big “political” issues facing the health care community today are tangled up in issue of getting more patients with diabetes to have primary-care based retinal exams:  diabetes health policy, remote monitoring services and telemedicine and physician reimbursement economics.  It is a complicated issue – but here is what it boils down to:  People with diabetes type I or diabetes type II as a population, are at risk of developing retinopathy, which can lead to blindness if not caught in time (caught relatively early, it can be treated via laser surgery, and patients can go on living a normal life, enjoying normal vision).  For this reason, every major health organization supports diabetes guidelines that recommend annual examinations by a qualified eye care professional (American Diabetes Association, American Academy of Clinical Endocrinologist; American Academy of Ophthalmology, Veterans Administration, Indian Health Service and CMS, to name a few).  Unfortunately, the reality is that the majority of people with diabetes do not follow through on this, even while they receive all other recommended diabetes examinations.  So, what is it about the retina exams?  Many hypothesized that it was the necessity of visiting an ophthalmologist, because it required a different appointment at a different location on a different date and time.  So, if it was somehow possible to combine the retinal exams in with annual primary care visit, it seems reasonable that a greater percentage of people with diabetes would complete the yearly retinal examination.  The plan to achieve this — give primary care providers the ability to perform retinal imaging examinations in their own offices.  How would this work?  By allowing these providers to take digital retinal images, which would then be electronically transmitted to a centralized reading center, where readers trained in diabetic eye disease would assess and grade the images and send results back to the primary care provider.  One visit at one time on one day to one provider in one office would yield all the medical results the provider needs to ensure the patient is managing their diabetes well, or to direct the patient to additional treatment.  Sounds pretty cool, and pretty simple, right?

Medical experts have given this solution this seal of approval, it received FDA approval process with no problems and the American Diabetes Association changed their guidelines to include retinal imaging, when reviewed by an eye care professional,  as an acceptable form of diabetic eye exam.  All of this happened in the early 2000s.  So this should be a done deal, available in a majority of primary care offices that treat patients with diabetes, saving thousands of people from a terrible fate of vision loss and blindness every year, right?

There is one last hurdle to clear — insurance reimbursement.  Despite the fact that this solution was all set for implementation more than a decade ago, it has yet to become commercially viable – initially because insurance companies did not cover the exams when performed “remotely/by telemedicine” (aka by taking a picture and sending it to a centralized reading center for grading).  This was overcome with appeals to major commercial payers to create new coverage decisions, and then approve reimbursement, for this modality of diabetic eye exams.  Medicare and CMS also did not fully embrace the modality, likening it screening benefits, not statutorily covered by Medicare.  And then — just this past year – new physician procedure reimbursement codes (called CPT codes) set payment for imaging capture and imaging interpretation at low values that there was still little commercial viability for the primary care setting – which was a major blow to people like Adi, who have been involved in attempts to implement this for over a decade.

What the future holds for the implementation of this procedure remains to be seen.  The Affordable Care Act sets aside funding specifically for wellness/prevention, which the eye exams fall under, so Adi and others see potential as long as that fund can survive the Congressional chopping block.  Adi also hopes that regulatory or even legislative action, if necessary, will close the gap on access to diabetic eye exams.  In the meantime, we all just have to hope that the eye sight of thousands of people is not compromised in the long term because health policy and healthcare economics between specialists and primary care physicians impede access to this vital test. 

I am writing to let everyone know about an upcoming Kreeger event—it is a program to benefit Alzheimer’s patients and their caregivers and families.  We’ll hear about it at the event Tuesday, March 15 at the jewel of a museum, over champagne cocktails and hors d’oeuvres. See below for more details.

Hope to see you there. 

About Conversations at The Kreeger Museum

The Kreeger Museum is proud to announce the launch of an exciting new art and music program for individuals with Alzheimer’s Disease (AD) and other dementia related illnesses and their caregivers.

Conversations at The Kreeger Museum is the first of its kind to be offered in Washington, DC. Modeled after the successful and pioneering Meet Me at MoMA (Museum of Modern Art, NYC) program, Conversations provides a forum for dialogue and connection through looking at art. A musical component of the program will weave music, paintings, and sculpture together and will offer a live musical performance for participants to enjoy. It has been shown that music is particularly beneficial for this population. Overall, Conversations is intended to stimulate conversation and memories for participants and to create a sense of well-being that can last beyond the tour. While here, Conversations visitors will have exclusive access to the museum’s world-class, architecture, superb sculptures and paintings.  The program is free of charge not only to patients but also to caregivers and family members. Currently, Conversations is being offered to small groups at mutually agreed upon times. By September 2011, a corps of specially trained docents will provide tours on a regular basis.

To deliver an excellent and beneficial program of the highest quality, Conversations has aligned itself with some of the country’s top researchers, service providers, and advocacy organizations. Georgetown and Howard University Hospitals will be Conversations’ medical research partners thus opening up the possibility of learning more about the disease and developing therapies for care and cure. In addition, the National Institute on Aging, the National Capital Chapter of the Alzheimer’s Association, Sibley Hospital, Grand Oaks Assisted Living, IONA Senior Services, The National Center for Creative Aging, and others are part of this special program.

The Kreeger Museum is uniquely equipped to create a positive and beneficial experience for AD patients and their caregivers. Designed in the 1960s by Philip Johnson, this masterpiece of modern architecture was the home of Carmen and David Lloyd Kreeger, former CEO of GEICO Insurance.  Approximately 180 precious works of sculpture and painting, including an extensive number of Impressionist paintings and a stunning collection of African and Asian Art, are displayed in the museum’s light-filled, intimate, inviting galleries and tranquil gardens and woods.  For more information, please contact Derya Samadi, Conversations Program Manager at 202-337-3050 x18 or by email at conversations@kreegermuseum.org.

Conversations Program Manager
Derya Samadi

Conversations Benefit Host Committee
Robert E. Davis, Trustee, The Kreeger Museum
Phyllis Greenberger, MSW, President & CEO, Society for Women’s Health Research
Carol Levin, Conversations Program Associate
Audrey Sheppard, Women’s Health Consulting  
Robin Strongin, President & CEO, Amplify Public Affairs, LLC, Disruptive Women in Health Care

Conversations Benefit Sponsors
Susan Gage Caterers
Walter Grio with Shoot for Change

The Kreeger Museum Trustees
Peter L. Kreeger, President
Carol Kreeger Ingall
Robert E. Davis
Jay W. Freedman, counsel

The Kreeger Museum Director
Judy A. Greenberg

Watch video

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

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

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

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

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

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

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

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

I learned everything I didn’t want to know about the health care system, but I eventually realized that the knowledge I acquired as an advocate is equally critical to health care practitioners if they are to provide quality health care, i.e., the right care the right way at the right time.  Adding the dimension of patient-centered care means care is delivered the way patients need and want it. 

Right now, we are still learning how to advocate for the right care the right way at the right time.  It looks like we’ll have to wait a while to get care the way we need and want it.   

As a parent and a physician, I had to be extra careful in the pediatric health care world.  If I came across as too demanding, I would have been dismissed as a neurotic or helicopter parent.  (I know a couple of physician-parents who were erroneously said to have Munchausen’s Syndrome by proxy.)  If I didn’t advocate, I risked danger.  In every situation, I had to find the fine line between objectivity and subjectivity, to assure myself that I truly was balanced in my approach. 

The problem is that even though most of us know what to advocate for, we are still dealing with human beings in the health care system.  They have pressures and barriers, they have egos, they have feelings – and they have the knowledge.  The art of advocacy is getting health care providers to do the following:

• Provide the best care so the patient achieves and maintains optimal health, and
• Empower patients with the knowledge needed to make informed decisions and self-manage their health and health care. 

The art of advocacy should empower health care providers to practice the art of medicine.

Parent advocates have another equally complex system to tackle: the education system.  After learning about all the various laws, e.g., American with Disabilities Act, Individuals with Disabilities Education Act and Section 504 of the Rehabilitation Act, parents have to learn about the culture of their child’s school as well as the county and state educational systems.  Then, parents have to advocate with human beings in the educational system to practice the art of education.

When our children grow up and enter adulthood, all the rules change and we are back at square one again.  The only consistency is that the systems are devoid of supports, and as parents, it is up to us to start over and learn from scratch on how to advocate for young adults with childhood-onset conditions and disabilities.

To help improve things for children with CMCD as they transition into young adults , Physician-Parent Caregivers (PPC), is launching EMERGE–a new campaign  next week…stay tuned…I will be blogging more about that in the coming weeks.  

In the meantime, I would like to introduce a special PPC young adult leader, Amy Long.  Amy is one of America’s 8.2 million amazing young adults with CMCD who push through barrier after barrier and never give up on their dreams.  Amy gave me permission to share her first person account of what it is like to be a young adult with a chronic medical condition.  She calls it, the Google Circus.

GOOGLE Circus

Five years ago, I aged out of my pediatric skeletal dysplasia clinic (a place for kids with bone diseases).   I will never forget my first two adult medicine experiences….The first happened late one Fall evening. 

I was in college dorm my senior year and I woke up  from a late afternoon nap with a terrible headache, flashes of light and floating dots in my vision. I have a rare connective tissue disorder and form of arthritis called Kniest Syndrome that puts me at risk for a detached retina.  The flashes of light and floaters are common symptoms of retina disease.  Retina detachment is only fixable in the first 24 hours. I immediately called Student Health who told me they could get me into see an eye doctor next week.  I tried to explain that I couldn’t wait that long but no one seemed to take me seriously. All the doctors had left for the day. I called a friend and we drove the Emergency department.

We arrive. I spell Kniest no less than 3 times for the tirage nurses. They lead me back to the eye exam room and leave the door open with my chart hanging there. The doctor grabs my chart, starts to come in, looks at my file. His eyes widen and he backs out of the room. Through the open door I watch him try to Google Kiiest Syndrome.  He flips through the links and then finally after five minutes comes back in and sheepishly asks me, “So what exactly is going on?” I tell him, yeah I have a migraine-like headache, and I am seeing stars. I have a collagen disorder that causes high myopia and thus very fragile retinas. “Yes, yes, how exactly do you spell your condition?” I spell Kniest 2 more times.  I then watch him turn around and type Kniest Syndrome into Google.

That night had a happy ending– I had my first migraine, not a retina detachmen,t but I couldn’t help but be terrified of what could have happened had I been really sick and I had not had adult medicine doctors who understood my disease.

A few months later it was time to find a new orthopedist because I had a nagging, worsening hip pain.  This time I had traveled six hours by car with my Mom in tow to go see an expert in adults with arthritis.

The Orthopedics department was brand spanking new and is entire separate wing of the hosptial, Mom and I decided this was a good sign. Mom and I had taken two bets that morning, one, that I would be the youngest patient by 4 decades at least and two that the doctors would have no clue what Kniest was…I lost the first bet in the waiting room, although the majority of the patients were over the 4 decade line, there was a football player who destroyed his knee and a lady about Mom’s age.

I was absolutely shocked when we were called in exactly at our appointment time, seriously Mom and I nearly passed out from shock. This may in fact be the first orthopedist appointment ever that we were actually called back on time. I passed the tech my X-rays and sat down in the consult room. The consult room was conveniently located right across the hall from the X-ray reading room, putting mom and me in front row seats for the circus.

 A crowd began to gather, Mom and I exchanged knowing glances, shoot…Then because the circus needed some PR, one of the white coats, exclaims quite loudly “Holy Moly, would you look at that…” Even more people gathered around my films.  I put my face in my hands. Mom sighed and said “We should sell tickets.”

That was my transition experience.  I was either a circus side show and/or no one had a clue how to care for me. The Google circus was terrifying, frustrating and completely unnecessary.  There is a better way to do transition both for the patients and the doctors.

Today I had a totally different experience . I just moved to a new city and am starting my first job as a pediatric resident (aka intern…aka doctor in training).  Upon moving here I was referred to the Skeletal Dysplasia TRANSITIONAL clinic at the childrens hospital.  I was a little skeptical at first because I had not seen pediatric doctors in five years. Would they treat me like a little kid?  Would they expect me to bring my parents? (who live 500 miles away)  Would they bring in 50 residents/medical students (my colleagues?!?!) to see the new weird case?

I was led to a cheerful exam room with murals and bright colors. But despite the pediatric surroundings I was treated as an adult.  Only one doctor came to see me and he was well versed in my disease both in childhood and in adulthood. My physician spent over an hour with me reviewing my current health concerns, my past history and discussing all the exciting things that go with starting my first real job.  He spoke to me as a partner in my care and encouraged me to participate in coming up with a treatment plan. He helped me line up referrals for orthopedics and an eye doctor in town.  He also helped me come up with a plan to navigate some of the more challenging aspects of my new job.  We came up with an emergency plan if I get hurt or sick so that we make sure I am cared for by doctors who know about my disease and know me.

It wasn’t rocket science, it wasn’t even an act of Congress, what happened today happened because a small group of physicians, parents and young adults in the region have realized that children with CMCD here grow up but rarely do they grow out of their need for specialty care.  For a variety of complicated reasons, adult medicine rarely gets enough training in treating childhood onset diseases much less helping young adults thrive as independent and self sufficient. It takes clinics like the one I visited where pediatric and adult doctors work together to care for young adults with CMCD.  We have a looong way to go before this is the norm but as a patient and as a doctor I am excited about being part of the movement that makes it happen. 

Because no one should have to be a part of the Google circus.

 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!

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.

Salim Khan, 3 year old pneumonia survivor from Bijnor, India by Ándre J. Fanthome

A photo contest seems like such a simple thing, but it’s a way to enable a problem to reach into our hearts and minds.  Pneumonia is a leading killer of the world’s young children, but the disease has very real and practical solutions.  Although I see the statistics and understand the scientific pathways, nothing impacts me more than seeing how the disease affects families and children or reaches the heart of a pediatrician.  These moments are often captured powerfully with the click of a camera.  While one child with pneumonia may seem just like a number to many, it is these stories and images that can make a difference.

Photoshare, Kids 4, Health, the International Vaccine Access Center at Johns Hopkins Bloomberg School of Public Health and The Global Coalition Against Child Pneumonia are sponsoring a photo contest to find the image that will make a difference in our minds.  Nikon will award digital cameras to category winners.  And, if you’re fans of Ann Curry of the Today Show and Nicholas Kristof of the New York Times, you’re in luck.  They, along with a professional photographer, are the judges.   Submitting a photo that jumps off the page and tells an important story would be a great way to get your experience and talent, or that of a friend, family or colleague in front of our celebrity panel.  For more information, click here.  Details on the time and place of the photo exhibit to unveil contest winners and finalists will be announced shortly.

In the meantime, think about how you can tell a story through an image and provide your comments on how we can ensure these visual messages get in front of policy makers, donors and organizations to encourage them to act urgently in order to make a difference.  Let’s use the images to become more informed about a devastating disease that has solutions.  We have the power to tell the story.  Sometimes it takes seeing to make sure we do.