Disruptive Women in Health Care » Children

The Art of Advocacy From the Perspective of (Physician) Parents of Children with Childhood Onset Health Conditions and Disabilities

Santi KM Bhagat, MD, MPH — Wed, 08 Sep 2010 13:31:05 +0000

By Santi Bhagat. We all know how hard it is to advocate for ourselves, our spouses and our parents. But can you imagine having to advocate for your child day in and day out for the rest of your life? This is the harsh reality faced by many parents of children with childhood-onset health conditions and disabilities. And believe me, it is hard! When my perfectly healthy child became critically ill at the age of 8 years, I went from being a medical fellow to a life-long, full-time parent advocate.

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.

So What You’re Saying Is I’m Fat?

Diana Long — Tue, 27 Jul 2010 13:30:37 +0000

By Diana Long. At the end of May I participated in Disruptive Women’s Breakfast Series, Childhood Obesity: A Big Fat National Challenge. We were supporting the First Lady’s Let’s Move campaign.

Don Mathis, a fellow panel member, and CEO Community Action Partnership provided an interesting perspective. “We’ve watched the obesity numbers for adults more than double over the last three decades. Why didn’t we realize that it was just a matter of time before we saw the same trend in our children?” Childhood obesity has tripled over the last 30 years and now stands at 17% of children and adolescents (ages 2-19); the percentage of overweight children is at, or above, 30 percent in 30 states. Obese children and adolescents are more likely to suffer from high blood pressure, cholesterol, Type 2 diabetes and are more likely to have learning problems.

At the end of last month the CDC released a new report on adult obesity. The news is “America’s waistline is still growing, or holding steady in some states, but not shrinking at all.” In other words, we’re still fat. Thirty-four percent (34%) of us are overweight and another 31% are obese. If you’re wondering if this includes you, according to the National Institutes of Health “anyone with a body mass index (a ratio between your height and weight) of 25 or above – that’s someone, for example, who is 5-foot-4 and 145 pounds — is considered overweight. Anyone with a body mass index of 30 or above — such as someone who is 5-foot-6 and 186 pounds — is considered obese.” You can check out your own BMI using the quick calculators on the CDC or WebMD websites.

So who’s the fattest? The CDC Report states “In 2007-2008, the prevalence of obesity was32.2% among adult men and 35.5% among adult women”. Some good news, however, “The increasesin the prevalence of obesity previously observed do not appearto be continuing at the same rate over the past 10 years, particularlyfor women and possibly for men.” A 2009 analysis commissioned by Trust for America’s Health and the Robert Wood Johnson Foundation found that “the Baby Boomer generation has a higher rate of obesity compared with previous generations. As the Baby Boomer generation ages, obesity-related costs to Medicare and Medicaid are likely to grow significantly because of the large number of people in this population and its high rate of obesity. And, as Baby Boomers become Medicare-eligible, the percentage of obese adults age 65 and older could increase significantly.”

In her June 6, 2010 DW blog Fox TV’s Dr. Archelle Georgiou shared questions from her viewing audience that were especially interesting to her. Charles, a 5’8” gentleman weighing in at 215 lbs., wrote in for help with his weight problem. When he received Dr. Georgious’ advice, however, he seemingly took offense (or had a good sense of humor) and asked “So what you’re saying is I’m fat?” “Yup!”, she replied, then editorialized “I’m amazed at how often people convince themselves that the BMI definitions of overweight and obesity don’t apply to them.”

It is just human nature. We rationalize things; we deny situations or facts apply to us. Like tobacco, obesity and inactivity increase the risks for the top three killers: heart disease, cancer and cerebrovascular ailments including strokes. Obesity and inactivity also strongly increase the risk of diabetes, the sixth leading cause of death. But it won’t happen to me (or Charles)!

I was encouraged by Dr. Georgiou’s advice to Charles: diet, exercise, accountability, and social support. “Join a program like Weight Watchers if you need to”, she said. We hear a lot about diet and exercise – from our doctors, the media, and our friends. We don’t hear enough about the other two: accountability and social support. These may be the ingredients we really need in our diets.

Accountable means answerable. You make a promise; you agree to change your behavior. You own up. You commit to yourself. You encourage friends and family to “keep you honest” and to support you in your efforts. You find a partner on the same journey and motivate each other (It’s probably how Wilma and Betty stayed so thin with those Brontosaurus-size portions. They had each other and an occasional girls’ night out.) Experts also recommend daily reminders, journaling, or now-a-days blogging and tweeting your goal and progress (although that might still be a little much for some of us) to keep ourselves accountable.

One thing Dr. Georgiou didn’t mention was incentives or rewards for a job well done. Whether they’re extrinsic ($25 to get us started with a personal health risk assessment) or just 5 minutes of fun when we meet a small milestone, incentives (motivation) are another necessary ingredient for change

I’m excited to see more and more health programs enjoining us with those in our personal support networks/communities and building in rewards. I encourage the creators to share innovations and perspective on this blog.

Now You See Them…Now You Don’t: Health Care Transitions for Young Adults with Chronic Medical Conditions and Disabilities

Santi KM Bhagat, MD, MPH — Fri, 16 Jul 2010 10:51:32 +0000

By Santi Bhagat, MD. It seems that children with chronic medical conditions and disabilities (CMCD) just disappear into thin air when they grow up. No-one tracks these young people, so we have no idea what happens to them. We don’t know if they have insurance and doctors; are sick and in emergency rooms; go to school and have jobs; and/or live independently and have social lives. It is estimated that 600,000 young people with CMCD enter adulthood every year, into a system devoid of any supports and services, a system that is completely unprepared for them.

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.

Childhood Obesity: A Big Fat National Challenge

Hygeia — Thu, 27 May 2010 21:35:19 +0000

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.

Wisdom or Innocence? Life Through The Eyes A Seven Year Old

Archelle Georgiou, MD — Tue, 25 May 2010 12:00:42 +0000

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.

When lack of trust puts us at risk

Lois Privor-Dumm — Fri, 21 May 2010 14:00:59 +0000

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.

Can a picture make a difference?

Lois Privor-Dumm — Fri, 23 Apr 2010 15:18:07 +0000

By Lois Privor-Dumm. How many times have you seen a single photograph that has caused you to stop what you’re doing and find out more, tell a friend or donate money? We read so much about the problems of the world today and, if you’re like me, unless the issue is already close to your heart, words alone may not be enough to register.

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.

Juvenile Diabetes: No Known Cause, No Cure

Hygeia — Mon, 19 Apr 2010 11:57:45 +0000

www.youtube.com/watch?v=9dNQ6HVbvk8

To learn more about the disease and get information about the JDRF Capitol Chapter’s 2010 Walk to Cure Diabetes, visit www.jdrfcapitol.org. The Walks will be held in Washington, D.C. on Sunday, May 2 and in Leesburg, Virginia on Sunday, June 6.

By Tamera Adams. “Can I do anything?” is the response 12-year-old Sara Jacob typically hears when she explains to new friends that she has diabetes and the device strapped to her waist is not a cell phone, but her “life support.” Those are the exact words Sara uses to describe the pump that automatically infuses insulin into her small body. It’s more critical than chemotherapy is to a cancer patient she explains.

Unlike a type 2 diabetic whose body doesn’t produce sufficient insulin, Sara’s body produces no insulin at all. She has type 1 diabetes, which is commonly referred to as juvenile diabetes and generally diagnosed in children, teens or young adults. It’s the most severe form of the disease, lasts a lifetime and its cause remains unknown. Most importantly, the complications that result from type 1 diabetes can be devastating.

Diagnosed at the age of four, Sara has no difficulty explaining what the disease is or how it has affected her life—neither does 12-year-old Jeremy Gross, also diagnosed at age four. Jeremy’s nine-year-old brother Benjamin, on the other hand, was diagnosed just two years ago and seems a little less vocal about his experience.

The stories they shared are common among children with diabetes—the difficulty of going on sleepovers at friends’ houses; teachers that make it difficult for them to leave the classroom to test blood sugar levels or take glucose tablets; and being instructed by gym teachers and coaches to remove medic alert jewelry to participate in sporting activities. Jeremy was especially grateful that he doesn’t have to contend with the latter of these challenges. Fortunately, his gym teacher is very understanding.

However, Benjamin once heard a teacher tell his class that exercise would prevent diabetes—a blanket statement about the disease that doesn’t apply to type 1 diabetics and made Benjamin slightly uncomfortable.

Although their parents are very involved and intervene without hesitation, diabetes is a difficult disease to manage, especially for a child.

That’s why the Gross family turned to the Juvenile Diabetes Research Foundation (JDRF) after Jeremy was diagnosed. JDRF immediately sent a Bag of Hope—which includes a glucose meter, books, DVDs and a myriad of materials to educate and lend support to diabetic children and their caregivers.

Becoming involved with JDRF was an easy choice for the Jacob family too. They wanted to dedicate their time and attention to an organization in search of a cure, and JDRF is the leading charitable funder and advocate of type I diabetes research.

As a JDRF youth ambassador, their daughter Sara has become an outspoken voice for the organization’s efforts to find a cure, not only in public service announcements and at events such as the Children’s Congress where she handed President Barak Obama her “Promise to Remember Me” pin, but at her new middle school too.

When asked “can I do anything,” Sara tells anyone who’ll listen about the JDRF Walk to Cure Diabetes. Excited about helping, they often want to know “Can we walk? When is it? What do we do?”

“I tell them you raise money. I explain about JDRF and let them know every $1 counts. And maybe that $1 [that they raise] will be the $1 that funds the cure,” Sara says.

Both the Jacob and Gross families began participating in the Capitol Chapter Walk the first year their children were diagnosed. Over the years, their Walk Teams, respectively named Sara’s Soldiers and 2 B.A.D. (Two Brothers Against Diabetes), have garnered a tremendous amount of charitable support.

For the past three years, Sara’s Soldiers has been the number one Walk Team, averaging $30,000 in donations. Last year, they rallied 119 walkers. This year, the Jacob family has gone viral, creating their own YouTube video.

The Gross family has also made significant strides over the years. Thanks to Jeremy and Benjamin’s Dad, Geico has been a Gold corporate sponsor for three years in a row. He initially approached his employer for a small donation and later asked for a larger one, which Geico granted in the form of a $10,000 sponsorship.

Every year their efforts along with 1.5 million others around the country bring victims of type 1 diabetes closer to a cure.

Before leaving, Jeremy reassured me that diabetes hasn’t hindered his social life one bit; he has a girlfriend. But that’s off the record and just between us.

Health Reform: A Lesson on Civility for our Children

Rozalynn Goodwin — Mon, 12 Apr 2010 00:20:54 +0000

By Rozalynn Goodwin. It’s pretty sad that we have come to the point that “civil discourse” must be taught on college campuses. Parents, not professors, should teach children to be polite and courteous and to take turns listening and speaking. But I guess with all the recent pre- and post-health reform tomfoolery displayed by juvenile-acting public officials and hate groups disguised as patriots, such coursework is necessary.

While I was watching the televised health reform vote in the United States House of Representatives a few weeks ago, I heard someone yell, “Baby killer!” and thought, “Oh no! Not again! As if South Carolina hasn’t had enough embarrassment for the 21^st century! Please don’t let it be one of our congressmen in another act of immaturity and lack of self-control.”

Thank goodness my state doesn’t have a monopoly on grown people acting like undisciplined five year-olds. Here’s to you, Texas!

We all read or heard about the spitting, cursing, racial slurs and vandalism that occurred during and after the bill’s passage. We can debate about whether this was the eruption of a sedentary volcano filled with deep-seated bigotry or simply the lust for power out of control, but one thing is certain. Elected officials in what many consider the most civilized of modern civilizations should exemplify civil discourse, setting examples for our children who will one day fill their shoes and run this country. I would like to believe that most parents are teaching their children to respect others, so it doesn’t help our children to see such disrespect and intolerance in the highest offices of the land. Our country may not demand that the men and women we elect to public office prove themselves to be role models of moral purity, but we should at least demand that they act their age.

Let’s take this opportunity to condemn such behavior to our children, and reinforce the importance of good old-fashioned manners. Maybe they can teach our elected officials a thing or two.

Round Two in the Fight to Cover Children with Pre-Existing Conditions: Cost.

Santi KM Bhagat, MD, MPH — Fri, 02 Apr 2010 12:07:29 +0000

By Santi Bhagat, MD, MPH. Health Care Reform is off to a good start. A couple of days ago, I blogged on the debate between the insurance industry and the administration about the interpretation of this new law. Hats off to insurers for making the right choice, right away, to heed regulations that are forthcoming from Health and Human Services. I first heard this through the grapevine at the Disruptive Women Breakfast Series this week from Stephanie Cohen, the expert panelist representing the insurance industry.

The law is intended to require insurers to issue policies that provide a full range of benefits for all children with pre-existing conditions starting in September 2010. That means insurers can no longer refuse to cover children with pre-existing conditions under their parents’ plans, even if the children never had insurance.

This law has far-reaching ramifications. A recent story about a newborn who was denied coverage at the age of a mere 9 days highlights how critical this law is. Born with a congenital heart defect, Houston Tracy underwent lifesaving open heart surgery when he was just 4 days old. His parents cannot afford insurance for themselves, being small business owners, and have individual policies for their older two sons. After being charged and given the run-around by the insurance company, they resorted to enrolling their newborn in the state’s high-risk pool.

The big question now is how much will insurers charge for these policies. If the price tag is too high, parents will not be able to afford to purchase policies, and in effect, coverage will be denied to these children.

It is not clear whether HHS regulations will speak to this issue. The administration will be watching the insurance industry closely. So will we.

Life in the Trenches of the Health Insurance Business: Calculating Coverage for Adult Children

Stephanie Cohen — Tue, 30 Mar 2010 04:21:39 +0000

Hygeia Note: On March 30th, Disruptive Women in Health Care launches the first of its monthly in-person breakfasts. Among our speakers will be Stephanie Cohen. Her post appears below.

By Stephanie Cohen. This month’s health insurance nightmare: Dad is still paying for his daughter’s insurance — and no one is happy.

The situation: I received a call last week from a client whose daughter recently told him she hates her insurance “because it does not cover anything.” He phoned me to see if she had a real gripe, and if I could help him find another policy with better coverage for her.

The problem: It turned out that her policy had a $5000 deductible, which did not include coverage for dental or vision doctor visits. Since she has an entry-level position and not a lot of extra spending money, I told her she had a choice.

She could choose to pay more per month to lower her out-of-pocket expenses, but her monthly premiums would be higher. Since her father was paying her premium, and was happy to do so, I decided the best policy for her was one with a higher premium and lower expenses.

The solution: The decision to pay for an adult child’s health care is a personal one that each family must make, of course. The reality is that once a child turns an age selected on the policy by the plan administrator based on the rules of the state and the size of the employer, they are no longer considered a dependent.

Many times, the insurance company does not notify the parent or the plan administrator that the student has been dropped. The student typically finds out when filling a prescription or when receiving services.

Keep in mind that it is the parents’ responsibility to notify the carrier that the student is or is not a full-time student and is eligible for coverage. The student is responsible for having a student certification form completed and signed by the bursars office proving they are in school fulltime with 12 plus credits.

If I were the Health Insurance Ambassadors: All students would have to prove they had coverage or they could not attend school.

Although with the recent health reform legislation there is now a new Federal mandate to allow children to be on their parents health plan until 26, it still may be less expensive to insure that child unto themselves rather than remain on the parents plan. Obviously, the rates will be much lower for someone who is much younger.

The painful truth: Parents can analyze the cost of coverage through the school or an individual policy versus the cost of keeping the child on his/her plan. If the parent has other children on the plan, it rarely saves to pull one child off the plan.

I encourage you to share your insurance nightmares with me.

Health Reform: Tinkering with the Health of Children with Pre-Existing Conditions.

Santi KM Bhagat, MD, MPH — Mon, 29 Mar 2010 15:40:53 +0000

By Santi Bhagat, MD, MPH. Policymakers and insurance industry are battling over a key feature of health care reform. As the president proclaims the bill will cover and protect all children with pre-existing conditions this year, the insurance industry is contending that the law reads differently.

Congressional leaders are outraged that insurers are trying to wriggle out of their legal responsibility to insure new children who have pre-existing conditions.

Insurers are interpreting bill language to mandate coverage of pre-existing conditions of children only if they are currently enrolled in plans, but not for new, uninsured child customers with pre-existing conditions.
The administration vows to fix this by having Health and Human Services (HHS) issue regulations next month to clarify the law’s intent to both provide access to insurance and a full range of benefits for all children with chronic conditions this year.
Insurers plan to act on legislation language. They will not say how they will respond to regulations and forecast that the courts will be the final arbiters.
HHS spokesman and chairmen of Congressional health policy committees in the House of Representatives assert that the administration’s solution adequately addresses this problem.
Citing experiences in other states, insurers are saying that covering children with chronic conditions now will lead to higher rates that may be unaffordable. They believe that it is better to wait until 2014, when the risk can be spread since most Americans will have to be covered that year.
Regardless, insurers are free to charge what they want until 2014, when health status can no longer be used to calculate premiums.

This is no small matter, for one in five American households, 8.8 million, has at least one child with a pre-existing condition. Contrary to popular thought, most of these children are covered by private insurance. The economic and job crises have impacted the ability of parents to maintain employer-based health insurance, forcing them to turn to the exorbitant individual market. Children with individual coverage and who go without insurance for two months are at the greatest risk of being denied access. From September 2010, the health care bill is supposed to prohibit insurers from denying individual and group coverage to children based on health status.

Health care reform does provide for a $5 billion dollar insurance pool of last resort that these families can turn to. Hopefully, this mechanism will help families until this problem is straightened out.

Parents cannot wait to obtain coverage for their children who are in urgent of need of health care now. Children are not simply little adults: denying access and care to chronically ill children denies them the ability to grow, develop, play and learn. As we watch the deliberations and wait for implementation of this piece of law, our children and families are losing precious time that can never be recovered.

Maternal Mortality Crisis in the US: Amnesty International Issues New Report

Ruth Lubic — Thu, 18 Mar 2010 16:08:07 +0000

By Ruth Lubic. The release this week of Amnesty International’s new report, Deadly Delivery: The Maternal Health Care Crisis in the USA, highlights the poor outcomes of African American women in particular.

When I set up The Developing Families Center in Washington DC’s Ward 5, it was with the goal of addressing this very issue, particularly from the point of view of infant mortality.

At a rate of 12.22 per thousand live births, the District has the highest infant mortality of any of the states, with only Mississippi, at 10.74 also experiencing a double digit rate.

The Center has been successful in reducing poor infant outcomes, especially as compared to the District’s African American population as a whole. Our data show the success of our staff of nurse-midwives, who function with the consultation of obstetrical colleagues at Washington Hospital Center, and nurse practitioners in lowering cesarean section and improving infant health. Breast feeding peer counselors, through influencing the Family Health and Birth Center’s (FHBC) high breast feeding rates also add to the health of mother and infant.

Our research also demonstrates the significant savings which have been achieved–all through collaboration with its community and its collaborating partners, the Healthy Babies Project and the United Planning Organization’s Early Childhood Development Services. There has been no incident of maternal mortality.

I hope this paper from Amnesty International will, in the long run, improve not only the infant and maternal outcomes, but also the quality of life of the families we serve.

May I also remind readers of the health needs of men in Ward 5, where the life expectancy for males, recently at 56 years, is lower than in Kenya!

The Urban Institute is currently studying FHBC’s outcomes and I will report on those once they are final.

Can 30 seconds of your time change a child’s life?

Lois Privor-Dumm — Tue, 09 Mar 2010 13:02:29 +0000

Editor’s note: This past December, the Disruptive Women in Health Care blog launched a series on The Value of Health: Creating Economic Security in the Developing World. In addition to Disruptive Women’s own pool of experts, a number of guests were invited to post on this critically important topic. We invite you to download the ebook or read the original posts.

By Lois Privor-Dumm. It’s really simple. 8.8 million children die every year. Not here in the US, but in developing countries where they don’t have access to the same care that we do here. How much of our global health budget goes to address these basic needs? Less than $1 of every $10.

Children are the future of every country. Providing them with basic care to ensure they survive until their fifth birthday doesn’t seem to be that much to ask. And, it’s a good investment. Simple antibiotics or oral rehydration solutions along with the basic vaccines that children receive in the US every year are available at a cost that is around many people’s co-pay for a single prescription.

Although pneumonia and diarrhea are leading killers of children worldwide, our government hasn’t made the investment in these simple solutions. Young babies don’t have a voice; we do though. We can afford to take 30 seconds or less to build awareness about these issues and help guide our global spending budget/

GAVI and Save the Children are joining together to make sure their voice is heard. The Global Health Initiative is citing greater emphasis on women and children, but their current plan doesn’t incorporate all that is available and highly affordable. Let’s make sure they our country focuses on long underfunded priorities. We can address this problem that many don’t realize is so large. Tell your colleagues, family and friends that pneumonia and diarrhea are the leading infectious killers of children that we can prevent and treat today. Vote for fighting the leading child killers on “Ideas for Change” on Change.org. It will take less than 30 seconds, but vote by March 12^th to help this idea receive the attention it deserves.

National Hispanic Medical Association (NHMA) Part of Obama’s Let’s Move initiative to battle childhood obesity

Elena Rios — Mon, 01 Mar 2010 14:24:04 +0000

First Lady Michelle Obama recently launched a nationwide campaign to lower childhood obesity, citing that one-third of U.S. children are overweight. NHMA is proud to be invited to partner with the First Lady and the White House in this effort.

The Let’s Move campaign will combat childhood obesity by focusing on four main strategies: helping parents make health family choices, providing healthier food options in schools, promoting physical activity and ensuring that low-income urban and rural areas have access to healthy and affordable food.

One in four Latino youth is overweight, and the result has been an alarming increase in Type 2 diabetes and high blood pressure among children. The causes are numerous and range from a lack of supermarkets in Hispanic neighborhoods to disparities in access to health services. But regardless of the barriers, this growing trend must end.

The mission of Let’s Move is to solve the childhood obesity epidemic within a generation. That’s an ambitious goal, and one that is going to require cooperation between governments, organizations, companies, schools and families at every level. NHMA is committed to doing our part to fight childhood obesity and will be working with the White House and our other partners to educate Latino communities on healthy lifestyles for children – everything from learning how to make smart grocery purchases to finding safe outdoor options for physical activity.

I’d love to hear your ideas for lowering childhood obesity too. What healthy lifestyle measures have worked in your family or community? Let me know!

Kids Empowering Kids!

Lorraine Friedman, JD — Fri, 12 Feb 2010 13:01:29 +0000

Kids learn best when they are having fun. This should come as no surprise to anyone.

When I go into schools with my new program: “Creative Core Curriculum”^TM and we learn through story and song, writing and rapping, music and movement – the kids have no clue that I am just following their curriculum, with a little creative spin. Why? Because, unfortunately, students are don’t equate fun and learning.

Time to shift that outdated paradigm. In today’s world, children are experiential learners. They learn by doing, creating, moving — diving into topics and exploring them, firsthand. That’s why the worksheet mentality of the 1950’s just doesn’t make sense anymore (if it ever did). And, yet when our school system and government needed to “teach” our children the life or death lesson of staying healthy through flu season, they sent home a one-page flyer with the information. Handing them a piece of paper and assuming they wouldn’t ball it up, or create a paper airplane or fortuneteller is wishful thinking, at best.

Why not have a little skit at school with one kid sneezing in another’s face and the child that got sneezed on gets just as sick as “Sneezy”? Or what about creating a game on a website where children could go to play a flu game. If they do the wrong things, their character would get sick. If they stay healthy, they advance to harder levels – challenging their understanding of the rules to staying well.

When I asked more than 50 students on the playground, none of them had read the information sent home, and most didn’t even remember bringing it home. That’s when it hit me – we can do better! We need to do better! If our educational system doesn’t get it and our government doesn’t get it – let the kids have a chance to get it right.

So, I created “No Flu 4 You!” — a funny, interactive song that contains the top ten points of staying healthy during flu season. Put to a fun, boppy beat – the kids couldn’t resist singing and acting out the hysterical lines.

Remember those jingles from your own childhood, well the reason you can still remember those decades later is the power behind rhythm and rhyme. I have spoken at many national teachers’ conferences (including NAEYC – the National Association for Education of Young Children) about using rhythm and rhyme to ensure messages stick. And, movement is another critical component. Most children are kinesthetic learners, meaning that adding movement to any lesson will help it sink in.

Yet, with all we know – we continue to send home one page flyers and expect that our children will get the information by osmosis, simply by holding it in their hands. “HELLO… not working!” That’s where we come in, the DreamDog Foundation’s latest program “Kids Empowering Kids!” Just in time for that last blast of February flu season, click here and sing along, pass it on to all the families you know with children. You just might be the key to keeping them healthy – and we guarantee you’ll have fun singing and rapping with the DreamDog kids!

P.S. An invitation to all Disruptive Women – we would love for you to join us for future “Kids Empowering Kids!” videos by subscribing to our Facebook fan page.

A new meaning for super-size

Lisa Korin — Wed, 10 Feb 2010 13:15:14 +0000

During this blizzard of 2010, I thought about the difficulties an ambulance would have reaching someone in need on an unplowed street—let alone if the person were significantly obese and hard to transport on even an ordinary day. Then today I read an astounding Washington Post article that noted “a patient between 400 pounds and 600 pounds is part of every workweek for many crews throughout the [DC metro] region.” Really? I thought this only happened on occasion in select areas shown on the Discovery Channel. Apparently, not the case.

Emergency medical crews are making hefty investments (no pun intended) in super-sized, ambulatory equipment. According to the article, “sales of stretchers designed specifically for very large patients were expected to reach $50 million in 2012, up from $29.6 million in 2004, while sales of specialized lift systems were projected to rise from $75 million to $193 million.”

And, it is interesting that just as healthcare spending is rising at a faster rate than the U.S. economy overall, the rate of morbidly obese patients who are at least 100 pounds overweight is increasing faster than obesity as whole, according to a RAND study.

What is more alarming is that, for the first time ever in U.S. history, children may have a shorter lifespan than their parents, and much of the reason is due to obesity and its related health problems. More than 23 million children (one third of all children and adolescents in the country) are overweight or obese and at greater risk for Type II diabetes and other chronic, life-threatening health conditions.

So, how can we keep our children from ending up in super-sized stretchers one day?

In a previous post, I discussed environmental factors that hinder our ability as a nation to stay un-obese, so I’ll expand on that with some ideas I’ve heard in the classroom.

One suggested strategy has been a soda or sugar-sweetened beverage tax.

Studies show that obesity decreases as the prices of unhealthy foods and drinks increase and that this is especially true for children, who are price-sensitive. In addition, many of the parents responsible for purchasing soda for children in the first place would also be price-sensitive, which is important, since parents are key agents of change when it comes to childhood obesity.

The tax funds could be used to target other types of obesity prevention programs. According to one report, a national tax of one cent per ounce of soda would generate at least $14.9 billion in the first year—an amount 30 times larger than what the nation’s largest funder of childhood obesity work spends in 5 years.

Another proposed strategy has been menu labeling, which would help both consumers to make more rational food choices and restaurants to make healthier ingredient decisions for some of their products.

Dining outside of the home comprises more than 45% of food dollars spent in the United States, per the USDA, and these meals have higher calories, fat, and sodium and fewer nutrients than those prepared at home. And despite the fact that some Americans prefer to select healthier foods when eating out, studies show that the majority of people cannot always discern between healthy and unhealthy food choices.

Evidence shows that packaged food labeling is associated with eating more healthfully, and the provision of nutrition information for away-from-home foods could also positively influence food purchases.According to the American Heart Association, a study of existing menu labeling policy in New York City shows that more than 80% of people viewed the change positively.

Meanwhile, menu labeling laws have also prompted some restaurants to make nutritional changes in food, now that the information is publicly available.

Finally, kudos to our First Lady for heading the Let’s Move campaign that seeks to resolve the childhood obesity epidemic by the next generation.

Those are just a few ideas in which I have seen a lot of discussion—what else can we do?

And, how do we address the short term question of keeping adults out of super-size stretchers?

Send me an angel

Liz Scherer — Tue, 09 Feb 2010 13:38:49 +0000

According to the non-profit organization Vitamin Angels, one in three children across the globe are malnourished. Just think of how much that percentage has increased by the Haitian crisis Indeed, Vitamin Angels has already shipped one million childrens’ multivitamins to Haiti since the earthquake.

A viable and invaluable solution to malnourishment is to provide these children with essential nutrients both here at home and abroad. According to research, one, high-dose Vitamin A capsule can reduce the risk of mortality among children under age five by 23%. Moreover, it can provide a sufficient dose to boost immunity for as long as six months, at a cost of only $.02 per capsule.

Multivitamins too, can help combat severe vitamin deficiencies and related diseases among the under five set, while also boosting cognitive and physical performance. In fact, according to a UNICEF Global progress report, almost 600,00 deaths from iron and zinc deficiencies could be prevented with proper supplementation coupled with food fortification. Another 18 million lives impaired by iodine deficiency could also be prevented.

These data are dire and the needs great. Supplements aren’t the only answer and better government coordination, food fortification, awareness and education are needed.

When most people think “global,” they don’t think “home.” But in order to be most effective globally, we also need to consider our own and our children’s wellness needs. I’ve been fortunate to become part of an Advisory Board for the Council for Responsible Nutrition Foundation’s Life Supplemented initiative. Late December 2009, they launched America’s Wellness Campaign, which is a three-tiered program aimed at helping individuals here at home take charge and monitor their health through diet, exercise and supplements. By offering people an opportunity to gauge and monitor the areas in which they need improvement and in turn, providing research-based informational strategies, Life Supplemented aims to help improve the nation’s health. But the effort extends beyond our borders as well; Life Supplemented has recently teamed up with Vitamin Angels to provide much needed funding for the programs by offering to donate one dollar for every individual who completes a Wellness Scorecard. Pretty simple; improve your own health and help improve others’ at the same time.

In 2009 alone, Vitamin Angels’ efforts reached approximately 11,000,000 infants and children in 40 countries (including the United States) by providing them with vital nutrients needed as a foundation for good health. I’d like to think that we help them exceed this milestone in 2010 and perhaps even reach some of our own.

Ctrl-Alt-Delete Sugar. But how?

Glenna Crooks — Mon, 05 Oct 2009 09:33:21 +0000

Perhaps you’ve seen it: the grocery-shopping mom, complaining about a sugar tax, saying it’s hard enough to raise a family in these times.

I saw it, and could not believe it. Was this ad actually claiming that families need sugared sodas to make it through tough times?

It took watching it on line at http://www.nofoodtaxes.com/ads/ several times to see that yes, indeed, that’s what it claimed.

I’ll agree that a soda and other sugared items are a nice occasional treat, but I see no evidence that they’re necessary to keep a family happy – or that there are no alternatives.

I’ve begun talking to kids about what they drink. Here is what I got:

I used to drink apple juice, now I drink water.
I drink water; that’s good for you.
I drink milk when I eat and water other times.
I used to drink (naming a brand soda) but now I drink water. The (soda) made my feel icky and I did not know how much until I stopped drinking it all the time.

Personally, I’m not a huge fan of plain water. I like a slice of lemon in it.

What about you?

Do you have a favorite alternative to sugared drinks?

Do you have any recipes for the beleaguered Mom trying to keep her family happy in these tough times? Do you have any tricks for weaning a family off sugared drinks?

The Fate of Children & Young Adults with Chronic Medical Conditions & Disabilities.

Santi KM Bhagat, MD, MPH — Thu, 27 Aug 2009 11:58:44 +0000

In the midst of furious showdowns on health care reform at town hall meetings, a moment of peace surfaced in Montana when President Obama drew bipartisan applause after calling a mother heroic. This mother of two had voiced her concern about the Medicaid program she relied on for her child who has multiple chronic conditions. The president reassured her and went on to discuss how our disease-care system does not proactively manage chronic conditions.

Children and young adults with chronic medical conditions and disabilities (CMCD) need proactive management now and for their entire lives. Our health care system fails to serve the young people who need it the most.

Children with CMCD are completely dependent on adults for their health care. Poor health management negatively affects their growth and development, education, and socialization – and drags the entire family down. As the mother of a young adult with CMCD and the founder of a non-profit created because of our experiences with poor quality health care, I cannot understand why this population is not a major focus of health care reform.

One path to start on is to build on successful programs to create a comprehensive system of care. Take a look at the 35% of children with CMCD covered by SCHIP/Medicaid. Medicaid provides a specialized set of comprehensive services known as EPSDT, Early Periodic Screening, Diagnosis, and Treatment Program. The current model of care in favor for chronic conditions is the medical home. First conceptualized by the American Academy of Pediatrics for children with CMCD in the 1960s, the medical home has yet to become the standard of care for children with CMCD in Medicaid. Pairing EPSDT with the medical home would be a step forward in developing a system of care for children covered by Medicaid. Another step is to expand EPSDT and medical homes to cover the remaining publicly covered children with CMCD enrolled in SCHIP.

On the flip side are the other 60% of children with CMCD supposedly fortunate to have private insurance coverage. These children do not have a framework like EPSDT to rely on. Nor do they have medical homes. And a recent study shows that public coverage provides greater financial protection to families than private insurance.[1]

What happens to these children when they grow up? They become young adults with CMCD. The supports and services they relied on as children suddenly disappear, and they enter a new world without any health care guidance or an adult health care system to transition into.

The first problem young adults contend with is obtaining and maintaining insurance coverage. Children with CMCD age out SCHIP and Medicaid between the ages of 18 to 21 years, and even those who meet financial eligibility for re-enrollment in Medicaid lose their protective EPSDT benefits. The private insurance market responsible for insuring the majority of these young adults presents many barriers. Full-time college status is required for family and college-sponsored coverage; so young adults with CMCD who can only commit to part-time cannot avail of this option. Obtaining employer coverage is difficult because young adults typically are low-wage earners and work for companies that do not provide coverage. To compound matters, young adults with CMCD have a tough time finding adult doctors who are willing and able to care for their child-onset conditions. Without insurance and access, one has to wonder how young adults with CMCD can maintain their health.

All parents know that feeling of panic and helplessness when their child falls ill and they have to turn to the health care system. This is just a glimpse of what parents of CMCD continually face. Yes, the mother whom the President met is courageous, and behind her stand another 15 million heroic mothers with fathers and siblings. These families battle systems of care to protect 15 million very precious children and young adults with CMCD.

Children with CMCD cannot vote and they lack an organized lobby. Their parents are consumed with managing ongoing crises. Young adults are bewildered with their newfound status and complex set of responsibilities. Just as we understand that certain populations need special attention because of their increased health care needs, we need to recognize that young people with CMCD have and will continue to have high rates of health care utilization. Fortunately, most people are sensitive and sensible enough to understand the need to support children and young adults with CMCD. Perhaps building health care reform around youngest Americans with CMCD would help design a system to serve the most vulnerable and provide a platform that all parties can work on together.

[1] Yu H, Dick AW, Szilagyi PG. Med Care. Does public insurance provide better financial protection against rising health care costs for families of children with special health care needs?
2008 Oct;46(10):1064-70