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.

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. (more…)

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.

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. 

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.

If medication adherence is a problem for adults, consider how difficult it is for young people with chronic medical conditions.

Alternate flavorings, formulations, and suspensions can help the medicine go down in children.  But what is the solution when taste is not the problem?  One approach we need to take is to put the young person center and first.  Talking past the child to the parents is a practice that continues today and even with many young adults patients.  If we want young people to succeed in self-medication management, they must be the drivers of their care.

Child-centered care:

 Psychoeducation: As soon as the child is able to participate, he needs to be educated about his condition and medication regimen so he understands what his happening to his body.  Participating in the decision-making process, e.g., whether to take the morning medicine after brushing teeth or at breakfast, protects the child’s autonomy and sense of control.

Contracts help in getting the young person to take ownership, and patient records are an age-old but effective method of monitoring adherence.  Children can check boxes on printed forms, manually or computerized; parents can help by incentivizing adherence with tokens or rewards.  Encouraging the child to share the record in the next medical visit further increases his autonomy – a critical issue when one loses the sense of control over one’s body.  Physician follow-up is critical to promoting adherence, e.g., counting pills, checking records.

Communication skills and understanding the young person’s perspective are key ingredients to building trust. A non-judgmental attitude along with a willingness to negotiate and temporarily modify medications can help a young person understand the need to adhere to a regimen.

Problems may surface when the child enters adolescence and considers engaging in risk-taking behaviors.  This is also the time to foster health self-management and start the transition process to adult-oriented health care.  As the teen matures, he must be educated and encouraged to learn about his condition and management. The physician should work with the family to develop a step-wise approach to increase responsibility, e.g., first succeed at level 1 for x months before moving up to level to 2.  For example:

1. Monitor patient-recorded adherence chart
2. Make doctor’s appointments and record on chart (physician visits are associated with adherence)
3. Order prescriptions and record on chart
4. Fill medication trays

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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 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?