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

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

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

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

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

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

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

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

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

You can read the full HuffPost story here: http://www.huffingtonpost.com/2011/08/20/dolphin-with-prosthetic-tail_n_927463.html#s330792&title=Dolphins_Fake_Tail

Blogger Concetta Tomaino who participated in the December 1st Event is truly a disruptive woman as described in the post below. 

By Hope Ditto. We’re used to our Disruptive Women bloggers being on the cutting edge in their fields and doing amazing things every day. We’re used to them saving lives, fighting for those without a voice and revolutionizing the world around us. Still, it’s not every day that a major motion picture being featured at the world-famous Sundance Film Festival is directly connected to their work.

Not that we’re bragging, but we feel pretty fortunate to call Dr. Concetta Tomaino, D.A., MT-BC, LCAT, one of our own these days. Besides having her work featured in The Music Never Stopped (and having Julia Ormond, the actress playing the music therapist in the movie, consult her on the role), Tomaino is internationally known for her research in the clinical applications of music and neurologic rehabilitation. The Executive Director and co-founder of the Institute for Music and Neurologic Function and Senior Vice President for Music Therapy at Beth Abraham Family of Health Services, Tomaino works tirelessly to bring new understanding to the field of music therapy by working with neuroscientists to determine the effects of music on the brain.

Tomaino and her colleagues use music to treat a myriad of illnesses, injuries and conditions – from Alzheimer’s to Autism, brain injury to mental retardation. At the Institute for Music and Neurologic Function – which she co-founded – music therapists work to treat all of these things and more, using the power of music in different ways and to different effects.

As Connie explained, “For someone suffering from Parkinson’s or recovering from a brain injury, music can be a gateway to speech. They may not be able to speak words, but they often can sing lyrics to familiar songs. Whereas, for a child in the pre-language stage of development, who suffers from say autism or has a mental retardation, we can use music to help them gain an understanding of communication.”

The Music Never Stops is one such success story of music therapy. Based on the essay “The Last Hippie Standing” by neurologist and Beth Abraham colleague Dr. Oliver Sacks, the movie portrays a family coping with their estranged adult son’s grim prognosis following surgery to remove a large brain tumor. Without an ability to discern past from present from future and with little hope for improvement, the father discovers music therapy and seeks out a leading music therapist (a character inspired by Dr. Tomaino’s own work with the patient who inspired the film) known for her success with similar cases. Together, the father and son reconcile through music and memories, and with the help of music therapy. Set in the 1960s and 1970s, against the backdrop of the Vietnam War and the tumultuous protests, the film is culturally, intellectually and emotionally resonant. And apparently quite good, as it was purchased by Roadside Attractions almost a month before its Sundance premiere (full story here).

That’s not the only big news Tomaino and her colleagues are celebrating in 2011. Just recently, there was a major breakthrough in the field of music therapy, when neuroscientists at McGill University discovered that listening to “good” (definition forthcoming) music “changes the chemistry in the brain by boosting the pleasure chemical, dopamine,” (per ABC).

For Tomaino, this was the breakthrough she’d been waiting a lifetime to realize. Not only is her institute’s mission to do just this – pinpoint a medical reason why music heals by determining the effect that listening has on the brain – but it has been her primary focus since undergrad.  

Neuroscience helped to provide the scientific basis for what Tomaino and many others already knew — that music has a unique and awesome power to heal – but, as she is quick to remind you, “Neuroscientists are not the ones doing the treating!” It is music therapists who work to integrate music and other more traditional therapy techniques in order to treat patients young and old. Still, she is excited about this and about the future of the field, which she says is at a crossroads.

“Twenty-five years ago, neurologists couldn’t study music. But in the last five-six years, it has become the hot topic of neuroscience. People don’t believe that the things we say we do here [at the Institute] are possible, but by researching collaboratively [with neuroscientists and music therapists], we are able to prove ourselves, our work and our methodology once and for all.”

The Music Never Stops premieres today (Friday, January 21^st) at the Sundance Film Festival in Park City, Utah. For updates about the film and upcoming opportunities to see it in a theater near you, check out their Facebook page.

My husband suffered a stroke that resulted in speech and mobility impairments around the time that the ADA became law.  The ADA continues to help my husband and family by increasing awareness and accessibility for people with disabilities to fully participate in our community, to go to school, work, shop, movie theaters, restaurants, and hotels, to use public transportation, to access hospitals and health care, and to have a place to call “home.”

The ADA rights also extend to caregivers of people with disabilities.  Balancing the demands of a full-time job and taking care of a family member with a disability or chronic illness can be difficult, even with the most understanding employer. Under ADA caregivers, male or female, are protected from job discrimination resulting from real or perceived family commitments.

I remember during an interview for a job found through networking, my potential supervisor — who knew that my husband had had a stroke — asked me how I would manage to travel.  I was very proud of my husband’s independence, and assured the supervisor that it would not be a problem. Although I got the job, I realized that discrimination against people with disabilities impacts their family as well.

The Federal Equal Employment Opportunities Commission (EEOC) published guidelines based on the ADA stipulating that employers cannot give different treatment to caregivers during the hiring process, job reviews, work assignments, or promotions based on stereotypes of caregiving responsibilities. Section E and F of the guidelines, and examples 17 and 20 relate directly to caregiver protections under the ADA. For a copy of the “Enforcement Guidance: Unlawful Disparate Treatment of Workers With Caregiving Responsibilities,” visit the EEOC website at: http://www.eeoc.gov/policy/docs/caregiving.html

To join the celebration of the ADA’s 20^th anniversary, visit any of these websites:

http://adaanniversary.org

http://www.ada.gov

http://www.ncd.gov

http://www.disability.gov

http://www.ncil.org

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.

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.

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.

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

1. 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. 
2.  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. 
3. 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.
4.  HHS spokesman and chairmen of Congressional health policy committees in the House of Representatives assert that the administration’s solution adequately addresses this problem.  
5. 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.
6. 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.

Over the next two weeks, Disruptive Women and guest bloggers, all experts in their respective field–each representing a different perspective — patient, physician, nurse, pharmacist, researcher, behaviorist, policy analyst, distributor, to name a few–will share their analyses, opinions, and solutions.

At the completion of this series, we will compile an e-book as we did when we tackled the issue of Comparative Effectiveness Research.

THE SCOPE OF THE PROBLEM

A new report, Thinking Outside the Pillbox: A System-wide Approach to Improving Patient Medication Adherence for Chronic Disease, issued by the New England Healthcare Institute (NEHI) found that patients who do not take their medications as prescribed pay a price in poorer health, more frequent hospitalizations and a higher risk of death.

Collectively, noncompliant patients incur up to $290 billion annually in increased medical costs–that’s $290 billion in avoidable medical spending every year, according to the NEHI report.

This is not a new problem, nor is it unique to the US.  In 2003, the World Health Organization (WHO) issued a landmark report entitled Adherence to Long-Term Therapies in which it noted:

Adherence to therapies is a primary determinant of treatment success. Poor adherence attenuates optimum clinical benefits and therefore reduces the overall effectiveness of health systems.

“Medicines will not work if you do not take them.”  Medicines will not be effective if patients do not follow prescribed treatment, yet in developed countries only 50% of patients who suffer from chronic diseases adhere to treatment recommendations. In developing countries, when taken together with poor access to health care, lack of appropriate diagnosis and limited access to medicines, poor adherence is threatening to render futile any effort to tackle chronic conditions, such as diabetes, depression and HIV/AIDS.
This report is based on an exhaustive review of the published literature on the definitions, measurements, epidemiology, economics and interventions applied to nine chronic conditions and their risk factors. These are asthma, cancer (palliative care), depression, diabetes, epilepsy, HIV/AIDS, hypertension, tobacco smoking and tuberculosis.

In the intervening years since the WHO issued its report, adherence has become more problematic.  Numerous reports highlight the ongoing challenges, which are especially critical in the mental health arena.

A study in the American Journal of Psychiatry found that close to 60% of schizophrenics who were prescribed anti-psychotic drugs did not take the medication as prescribed by their physicians.  “We looked at adherence to anti-psychotic medication because they form the backbone of treatment for schizophrenics,” said Dr. Dilip Jesete, co-author of the study.  “These medications are good, but only work when taken properly.”

The study found that psychiatric hospitalizations were higher for people who did not take their medication as prescribed.

When schizophrenics, a disease which affects over 2 million Americans, do not take their medication, they are at risk for dying by suicide.  Four out of ten people who suffer from schizophrenia attempt suicide and one in ten die by suicide.

SOLUTIONS

Despite the complexity of adherence related challenges, a number of promising solutions, innovative responses and well-researched efforts are underway.  Many of these will be described in greater detail in our Drug Adherence series.

Some of these include:

• Text message alerts to remind patients
• Greater use of health care teams
• Integration of health information technology
• Creation of online and offline medication management systems, reminders
• Health e-games
• Insurance reforms
• Public awareness campaigns
• Patient education
• Mobile phone applications
• Research in gender-based barriers

We look forward to your comments and input as we shed light on this critical policy issue.

October is National Disability Employment Awareness Month and to celebrate, our Man of the Month is Paul Berger. Paul is the award-winning author of “How to Conquer the World With One Hand… And an Attitude,” chronicling his adventures in returning to work and to a meaningful life after suffering a severely disabling stroke at the young age of 36.

On Wednesday, Paul spent the day with about 100 other dedicated stroke and heart disease advocates visiting members of Congress to urge enactment of legislation to make health insurance more accessible, affordable, and adequate. Paul’s stroke is one of those “pre-existing conditions” that can make insurance inaccessible and unaffordable. And many policies have inadequate benefits to cover the rehabilitation services needed after stroke—speech, physical and occupational therapy services that should extend for months—not weeks—as long as the patient continues to show progress.

Many stroke survivors like Paul have insurance that is tied to their disability status. So the goal of returning to work is complicated by the specter of losing health insurance that is not available or affordable through the prospective employer. While Paul could not return to his pre-stroke profession—a public policy advisor in urban redevelopment—he persisted in finding employment. First as an accounting clerk, then returning to school to learn computer-aided drafting, and later as a publisher and motivational speaker—despite his continued post-stroke speech problems (“aphasia”) and right-sided paralysis.

Paul runs his own company, Positive Power Publishing, where he proves everyday that stroke survivors and other people with disabilities can be productive, tax-paying members of the workforce, doing jobs well beyond the imagination of most rehabilitation professionals and vocational counselors. Paul’s message to others, “If I can do it, you can do it too!”

To learn more about Paul’s inspirational journey, visit his website, www.strokesurivor.com. To learn more about National Disability Employment Awareness Month, visit the Department of Labor’s site: http://www.dol.gov/odep/faqs/ndeam.htm.

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.

• 18-29 year olds make up just 17% of the population but 30% of the uninsured, and
• Entering adulthood triggers a serious risk of becoming uninsured as the rate almost triples from 11% to 29%.

As we look at this age group, it is critical to hone in on young adults with chronic medical conditions & disabilities (CMCD) since they cannot afford a single day without coverage.

Aware of the need to continue care, they, or their parents, are inclined to seek coverage. However, young adults with CMCD encounter many obstacles:

• Only 54% are able to attend college or work, usual prerequisites for insurance;
• Relying on individual coverage is risky because of pre-existing conditions and inadequate benefits;
• Young adults with CMCD are three times more likely than their healthy peers to earn under $15,000 a year and live in poverty, another risk factor for becoming uninsured; and
• A vicious cycle ensues when 54% of young adults with CMCD lack a usual source of care and two-thirds delay or miss care because of costs. Foregoing treatment hinders their ability to maintain the health status needed to go to college or work.

How can we assess the significance of a specific population without appropriate studies?
We had a logical reason for not studying this population – until now. In the past, children with CMCD did not survive to adulthood. Thanks to advances in medicine paralleled by a rise in chronic conditions, we now face a tidal wave of emerging adults with CMCD:

• Every year, over half a million children with CMCD enter adulthood, and
• Extrapolation of child health data reveals 4.5 million young adults aged 18-24 years have CMCD.

Unprepared, we are unable to build on the systems of support designed for them as children. These young adults with CMCD who struggled as children to be like everyone else and gain independence from their parents fall off a cliff, so to speak, when they turn 19. They age out of support systems, they age out of insurance, but what they are unable to age out of is dependence on their parents.

Even if young adults with CMCD are fortunate to have coverage, they experience another major problem with access: the dearth of adult physicians available, willing, and able to care for their childhood onset conditions. Too often, these young adults remain under the care of their pediatric providers, sometimes forever.

We need to ensure young adults with CMCD are included in health care discussions. What role do they play in issues regarding the uninsured, health care costs and resource utilization, poverty, and social welfare? What impact do they have on the workforce and its productivity? Can we afford to keep them invisible?

Beyond numbers, a moral imperative also presents itself. As a nation committed to promising our children good health and education, are we extending this promise to all of our children and young adults? Shouldn’t our children with CMCD have a fair shot of growing up into educated young adults with the best possible health?

As we embark on one of the greatest changes our health care system has ever seen, will we do the right thing and embrace children & young adults with chronic medical conditions & disabilities – the population that has the most to gain from improved access and quality health care over an entire life’s span – and put their needs at the center of the discussion?