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.

Every January, new billing rules and rates go into place for physicians’ services as part of the annual update to Medicare’s Physician Fee Schedule. Dominating DC health policy concerns in this arena are the medical community’s efforts with Congress to address Medicare’s cost-of-living adjuster, known as the “sustainable growth rate” (SGR), which would have lowered 2010 fees across-the-board by 21 percent, if not for a last-minute temporary stay through the end of February. Negotiations with Congress are on-going to provide a long term or multi-year solution—a costly “fix” that I believe is well worth the price to keep physicians in the Medicare program, and seems to have widespread support.

Getting much less attention is a unilateral policy pronouncement made by the Centers for Medicare and Medicaid (CMS) that Medicare will no longer pay specialists a higher rate for consultations—services often provided by specialists like cardiologists and neurologists. Instead, all physician visit services, whether defined as “evaluation and management” (E&M) services or consultations, will be reimbursed at the same E&M rates. (more…)

Healthcare (insurance) reform has passed in the Senate and final negotiations are happening before it moves on to the President’s desk for signature. While the legislation is not perfect – in fact some would say far from perfect – it is a piece of legislation that is very much in keeping with our American philosophy, our constant pursuit of progress and change.

As the late Senator Kennedy’s career on Capitol Hill demonstrated, change is usually incremental, usually negotiated and usually compromised. But at the end of the day, change usually amounts to progress.

I see tremendous progress, too, as I look back on a decade’s worth of work to promote access to affordable quality health care using nurse practitioners in the role as primary care providers, thereby alleviating the burden on a strained primary care system.

We’ve come a long way regionally and nationally. The fact that we as a country are always striving to improve our path is what most invigorates me as a relatively new American. Our pursuit of progress is never ending, but it is what sets us apart from most countries in the world. We know our work is never done. As we enter a new year and decade, we always should remember that what makes us different from most people and countries in the world is that we have the freedom to purse progress and make change.

This health insurance reform bill is not the end all or be all, but it will help make affordable health insurance available to more than 30 million Americans who have been without it. Furthermore, the legislation contains many provisions for others who fall through the cracks and will need additional care and support.

That’s progress for individuals, families and America, as Walt Disney would have said. And not until you take a ride on the Magic Kingdom’s The Wheel of Progress will you truly appreciate how important it can be to take even a small step in the right direction.

Happy New Year! And a toast to a New Decade and our new Pursuits of Progress for individuals, families, and our country.

As we all know, children can’t speak for themselves, but if they could, they’d probably point out the obvious: they need more attention.    There have been some great strides over the years and some compelling examples such as those shown in Bill and Melinda Gates’ Living Proof project and the Measles Initiative.  In the recent installment of Raj Shah, the new USAID Administrator, he touts the progress that his new agency has already made in preventing unnecessary deaths.  He is pragmatic and encouraging as he also says that much more should be done.  To save more lives, we need to make sure the US investments are there. Look at the numbers: More is needed to ensure two leading childhood killers are addressed.  More global funding is needed for new vaccines such as pneumococcal and rotavirus vaccines offered through the GAVI Alliance to prevent much of the disease in these at risk children.  Vaccines can’t do the whole job, so inexpensive treatments such as antibiotics or oral rehydration therapy are also needed along with training of health workers to prescribe or education of parents to seek care – certainly not impossible, but requiring some effort and focus.

Sources: US Global Health and Child Survival Budget, 2009 and UNICEF, State of the World’s Children, 2008

Now is the time to speak up and insure that the right investments will be made.  Please Call to USAID to take action on pneumonia and diarrhea.  You can submit a letter to Dr. Shah both welcoming him and asking for him to speak up for children.  Visit: http://www.change.org/actions/view/call_to_usaid_to_take_action_on_pneumonia_and_diarrhea.

Think you have maternity coverage? Think again.

Welcome to the first entry of the book I’ll be publishing in 2010 entitled: You gotta laugh: Life in the trenches of the health insurance business. Because I think Disruptive Women readers will find it useful, each month I’ll post an example of a health insurance problem that is so maddening and frustrating that we just gotta laugh at its absurdity.

My goal, however, is to find a way to improve health insurance for beneficiaries and I have some suggestions at the end of this post.

This month’s question: What do you do when you have it in writing from your insurance company that you have maternity coverage — but when you go to use the benefit, the customer service department tells you otherwise?

The situation: When our client, Ms. R, found out a few years ago that she was having a baby she was thrilled. Immediately, she called the insurance company to confirm her pregnancy benefits. Making the call was merely a formality. When she originally purchased the policy, she was single and didn’t opt for the maternity rider. After she got married, she added maternity coverage because she wanted a family.

Indeed, when she called the insurance company, they confirmed she had the insurance she needed. However, after her first OB check-up she received a letter saying she was, in fact, not covered.

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The following post by Liz Scherer, Principal of Digital Copy, LLC, is part of Disruptive Women’s “The Value of Health: Creating Economic Security in the Developing World” series.

Liz Scherer is a digital copywriter, health reporter, medical writer, marketing and social media consultant, blogger and women’s health advocate. With over 25 years experience in the healthcare arena, Liz has worked in the private and public sectors on behalf of web-based and traditional science publishers, public relations and advertising agencies and non-profits.

There’s an elephant in the room: band-aids.

Poverty and its relationship to the provision of and access to healthcare is a global problem. This month, esteemed Disruptive Women in Healthcare bloggers and guest posters are writing on this critical issue with a unique look at the problems abroad. Yet, this has prompted me to look within, for if we can’t address our own problems, how can we possibly be successful at addressing problems outside our immediate borders?

It’s no secret that the divide in the U.S. comes down to socioeconomic status. And while our representatives in Washington continue to battle it out to devise a healthcare reform bill that, for all intents and purposes, may ultimately serve the power lobbies more than the public, a significant proportion of our population is being pummeled into submission with powerful drugs.

According to an article in the New York Times, children from poor families receive antipsychotic medications four times as often as those from wealthier families. What’s more, it appears that these children are likely to receive a prescription for less serious conditions than would commonly prompt a prescription for a wealthier child. The divide: Medicaid versus private insurance.
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The following post by Dr. Agnes Binagwaho, Permanent Secretary of the Ministry of Health of Rwanda, is part of Disruptive Women’s “The Value of Health: Creating Economic Security in the Developing World” series.

Dr. Binagwaho is a pediatrician specializing in emergency pediatrics, neonatology, and the treatment of HIV/AIDS in children and adults. She has served 4 years as Chair of the Rwandan Steering Committee for the United States President’s Emergency Plan for AIDS Relief (PEPFAR), and was responsible for the management of the World Bank MAP Project in Rwanda, while also serving on the country’s High Commission on Aid Policy.

Unfortunately, in the majority of the developing world, mental health is not an issue that is given adequate attention. However, if we take the definition of WHO, mental health plays as important part in overall health as the physical aspects do. To improve mental health, governments have to create a well-trained and well-equipped workforce to care for mental health and ensure that the funding and human and physical infrastructures are available. This will help to increase access to mental health care, but should be completed by making drugs available, like psychotropic drugs. Many of these medications are not so expensive and can be part of public essential drugs available at public health facilities. It is a matter of paying attention to the problem.

Also, the general population should be educated via mass media campaigns so that they will have less fear and a better understanding of mental health diseases and those who suffer from them, causing mental health patients to suffer from less isolation, stigma and discrimination. This can be done by partnering the government with civil society organizations to improve the public education on this issue through TV, radio, speeches, billboards and community events.

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The following post by Glenna Crooks, PhD, founder and President of Strategic Health Policy International, Inc, is part of Disruptive Women’s “The Value of Health: Creating Economic Security in the Developing World” series.

Glenna Crooks solves some of the toughest health care problems of our times by distilling chaos and complexity into recognizable and easily digestible, action-oriented insights. Her clients, businesses and governments around the world, have used her Centricity Principle™ approach to create successful organizational, national and global transformational strategies.

The converse is also true. Improving health is an economically wise and productive investment.

In fact, that’s the reason that health systems were established – by the King and the employer – documented as far back as 4,000 years ago.

There is good news to today’s world: a positive cycle of gains in both health and economic security occurs as either one is improved.^[1]

Have we taken the value of health for granted? I think so and find that especially the case among those of us in the health community. We talk endlessly about improving health outcomes as if those outcomes were an end in themselves. We have fallen victim to the notion that health expenditures are a cost, rather than an investment. We have forgotten our origins in economic growth and security. We have set our sights too low.

It’s high time we set higher goals. Disease creates barriers and slows progress towards economic status and security. As health improves, people experience both immediate and long-term economic benefits. Individuals become more productive; they enhance not only the quality of their lives but their capacity to enrich economic well-being.^[2] “Health is an economic engine.”^[3] This is true not only for individuals but also for families and societies.

World Health Organization (WHO) and World Bank benchmark reports outline the relationship between good health and economic development; good health is not only a means to reduce poverty, but also a means to accelerate national and personal economies.^[4],^[5]

• Individual health increases personal productivity and earnings. Extending healthy years of life increases the number of working, income-earning years. Healthier workers are more productive economically during their working years as well.
• Good health reduces the funding required to treat disease, allowing people and nations to invest in other needs.
• A healthy population encourages foreign investment, technology transfer, and facilitates access to global markets.^[6]
• Healthy children are more prepared for school, miss fewer days of school, attend school for more years, and learn more while in school.  In addition, longer life span is associated with more years in school and each year of schooling results in a 15% higher starting wage and a doubling of the rate of subsequent salary increases.^[7]
• Natural resources previously inaccessible due to disease (e.g., agricultural acreage unusable because of malaria) are made available for production and farming.^[8]

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As I mentioned in my post last week, Disruptive Women in Health Care is tackling the issue of drug adherence, often referred to as America’s other drug problem.  From a health policy standpoint, the issues cross financial, clinical, behavioral, and cultural boundaries.

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.

Ever wonder why your physician only spends 5-10 rushed minutes with you during your office visit? You may think it’s because there are simply too many patients vying for her time, but that’s not the real reason. The root cause is that health insurance companies are stealing time from your visit by requiring excessive documentation from your doctor. She can’t give you the time you need, because doing so would put her out of business.

In a special report on the administrative burden of healthcare, MedPage Today revealed that PCPs spend about one third of their income on documentation required by health insurers. Because they run a business with thin margins, they must increase the volume of patients they treat in order to cover the salaries of the staff required to manage this “paper weight.”

About 49% of all physicians have said that they are considering retiring or quitting medicine in the next two years (the rate is lower for specialists), largely because of increasing documentation requirements and decreasing reimbursement.

Primary care is hardest hit by costs of coding and billing requirements, since they charge relatively little for their individual services. Imagine the difference in complexity between freezing a wart versus removing an appendix. Yet the number of people required to document, code, and process the paperwork for those two procedures are similar. The reimbursement, however, can differ by thousands of dollars.

The average PCP requires 4.5 staff to manage the administrative challenges associated with practicing medicine. If you consider that the average annual income for a PCP is $149,200, then it’s easy to see why a PCP’s income barely covers staff salaries, let alone the overhead associated with office space, supplies, and computer technology.

How can family physicians survive in this hostile reimbursement environment? There are really only two choices: to work in large group practices or to cease accepting insurance. (Of course, I’m leaving out the third option: to choose a different career).

I have decided to join an insurance-free practice. Now, before you assume that this means “concierge medicine” with exorbitant membership fees – let me tell you that it’s not what you think. DocTalker Family Medicine simply charges an hourly rate for my time – and I do whatever is appropriate for the patient, whether it’s a house call, an office visit, an email, or a phone call. There is no membership fee, people can pay with their credit card, cash, check or PayPal, and once we’ve met in-person and a full history and physical is performed, much of their care can be accomplished remotely.

So what does that cost? The average patient in our practice spends $25/month on their primary care needs. Isn’t that amazing? We can charge reasonable rates because we’ve reduced office staff from 4.5 to 0.5 people/provider and we pass on the savings to patients. We answer our own phones, we see almost all patients within 24 hours, and we’re available 24/7 by phone and email. And you know what? We’re happy to do it because we find meaning in every interaction. We aren’t being crushed by a paper weight.

As healthcare reform moves forward, and new ways are sought to wring money out of a crazy and convoluted system, it might just make sense for some of us to opt out and get back to basics: a doctor or nurse available 24/7 for your primary care needs at a price you can afford. No red tape, no unnecessary office visits, no insurance company hassles.

Anderson Cooper sent a reporter to our practice to see for herself what hassle-free medicine actually looks like. I hope you enjoy the segment… and if you’re in the DC or Virginia area, please check us out for yourself!

This post was originally published at Better Health.

Several months ago I was attending a funeral.  After being introduced to a relative’s relative, my family member asked me if I knew what had happened to Mr. Smith, pointing to the elderly man walking with a cane.  It was a miracle my family member said.  A miracle I wondered, looking skeptically at him.  Yes, Mr. Smith was having a CAT scan and the results showed that he had pancreatic cancer.  A miracle I asked, why so.   As it turned out the patient, who in his early 80’s went to his doctor complaining of not feeling well.  Abdominal pain. Distention.  General malaise and discomfort.  One thing led to another and CAT scans were ordered.   And as the family story goes, “by mistake” a CAT scan of his pancreas was performed.    And as I understand the story, the tumor was removed.  No metastasis was found.  The gentleman was advised to be sure to come in for his scheduled checkups and to tell his doctor about any subsequent health problems, and to be prepared for follow-up tests.   He was told that some tests will be repeated in order to see how well the treatment is working.  The recent death of actor Patrick Swayze reminds us that pancreatic cancer is so difficult to detect and diagnose early. There aren’t any noticeable signs or symptoms in the early stages of pancreatic cancer.  The signs of pancreatic cancer, are often like the signs of many other illnesses.[1]   Hmmm, I agreed, a miracle by accident.

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.

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As the nation’s oldest consumer organization, the National Consumers League has been working toward health reform for decades.  Our former President, Josephine Roche, drafted the first piece of universal health care legislation for President Franklin D. Roosevelt in the 1930s.  Like so many others, we are pleased to see that today our foremothers’ determination to provide health coverage for all Americans is coming to fruition.

The League appreciates the hard work of those in the HELP and Finance Committees in the Senate and in the House Committees in providing affordable and quality health care for all Americans.

At this moment in history, more Americans than ever before agree that health reform must happen now and can’t be put off for another day. 85% of Americans think the system needs to change, according to a recent New York Times / CBS News poll.  Consumers need access to health care that is high quality and is  centered around their needs.  The places where Americans  live, work, and go to school must be involved, and each must be part of the national goal of living healthier lives.

All of this must be accomplished while keeping health care affordable. Right now, it is not. Sponsored health insurance premiums have nearly doubled in the last decade, rising three times faster than wages.  No longer will health insurance companies be able to discriminate against consumers because of their health status.

NCL also supports a public option, which will give us  transparency and competition between public and private insurers.  If we provide health care coverage to all Americans, we can also save hundreds of billions of dollars previously used to care for the uninsured.

With 75% of health spending going towards care for the chronically ill, we must refocus our system on prevention and health promotion. We can no longer tolerate a system dominated by treating problems; it’s time to provide Americans the necessary resources and tools to attain a healthy lifestyle.

The lack of comprehensive health care coverage is  America’s albatross – it makes our businesses less competitive and our workers less healthy.

Regardless of political ideology or special interest, we need to ensure that the system is reformed.  The cost of doing nothing is unthinkable.

As HHS Secretary Sebelius has said,  it’s the one of the most personal issues to so many Americans.  It is, after all, one of the only pieces of legislation that will truly affect EVERY American.

The giggles started almost immediately.  Ola. Me llamo Meryl.  I am guessing that it was my remarkably un-Spanish sounding accent.  Ever since my chlidren had taken Spanish in middle school and I had tried to help them study, they had marveled at my attempts to pronounce their Spanish vocabulary words but I could not do so no matter how hard I tried.    But I digress.

Ola.   Me llamo Meryl.   We were standing in front of 60+ students ages 7 and 8 in a small village school about 2 hours north of Quito, Ecuador.   We were part of a small group (40+) of Americans who had traveled on “vacation”  to Ecuador on a service/humanitarian trip. Some of us were helping “teach” in the schools; others were helping paint the buildings or construct tables and chairs; and the medical team (of doctors and nurses and physician assistants and social workers and nurse practitioners and translators), was working with local health care workers and seeing people at local clinics and from a bus equipped to function as a clinic on wheels.

So as the U.S. stands poised to spend billions of dollars on health care reform and to assure that all Americans have access to the highest quality and most affordable care  and to equip our physician practices and clinics and hospitals with the best electronic health records money can buy;  and funding the most robust and comprehensive research and comparative effectiveness studies……………….. I keep thinking back to the people who didn’t know what it meant to use a tooth brush; or to have soap to wash their bodies or their clothes;  I keep thinking back to the young, wide eyed children seeking a smile and a simple acknowledgement from their American visitors; hugging us hello each morning and hugging us good bye each afternoon; to the countless women washing their family’s clothes in the seemingly polluted rivers along side the cows and sheep and llamas; to the men and women hunched over their knitting needles and yarn for 10-12 hours/day making hats and sweaters and scarves so that they could take their products to market and hopefully support their families; to the dozens of elderly who were blinded by cataracts and unaware of how relatively “simple” surgery could grant them the gift of eyesight again; to the pungent smells from shoeless and toothless “locales” who had probably not bathed in days or weeks or months; to the stories we shared with each other during our “evening debriefs” and how each of us was humbled by the innocence and pride and self sufficiency of the people we met; and how we were inspired by their sincere and genuine and heartfelt friendship; and how I keep thinking about the interrelationships between health and health care and education and clean water and clean air and basic sanitation and plumbing and running water and personal hygiene and poverty and illiteracy……..and I keep thinking about the possibility of returning to Ecuador next summer…….because it was one of the best summer vacations we ever had.

As our nation brainstorms the best way to reduce the millions of uninsured, we need to focus on the largest and fastest growing portion: 13.7 million young adults:

• 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?