With All Our Might...Elevating Child Health Policy

Doctor Shortages Highlighted

An issue that we have highlighted in this blog numerous times – shortages in pediatric specialists -- got some news coverage this week.  We released data from children’s hospitals earlier this year that shows long wait times for appointments for several specialty services for children.  The two articles below reinforce the importance of this issue for children.

An article in the Asbury Park Press.comoutlines the shortage of primary care doctors and specialists in New Jersey.  Specific examples are provided on the shortage and the impact, including the shortage in some pediatric specialties.

Another article in the Worcester Telegram & Gazette features John Gillespie, a seventh grader from Massachusetts who participated in our Family Advocacy Day earlier this month.  John’s story brings home the critical need for doctors who specialize in pediatrics and conditions that affect children. 

Both of these articles highlight the need to ensure that coverage equals access so that children are able to receive the care they need when they need it. 

Planting the Seed

By guest blogger, Larry McAndrews, N.A.C.H. President & CEO

I had the privilege of visiting the White House again yesterday for a presidential briefing on the progress of the Affordable Care Act since it was signed into law three month ago. For children, we are pleased that insurance plans will be barred for denying coverage for preexisting conditions, that caps on benefits will eventually be eliminated and that children will be able to stay on their parent’s plans until age 26.

Being in a position to represent children and children’s hospitals is always an honor. Being invited to the White House still carries the possibility of conveying to just the right person at just the right moment just the right message. There is the excitement of being a small part of history, of course, but more energizing is finding the moment to deliver the message, to plant the seed.

Looking around at the White House event, the crowd is not our usual crowd. Most attendees are state insurance commissioners and senior insurance executives, invited by the president to promote new requirements in health reform for health insurance. Sprinkled among the crowd are members of Congress and the administration. Each of the association heads politely waits to deliver their message. 

I spoke about our quality initiatives and federal matching of state funds through FMAP with Tina Chen, director of the White House office of public engagement, and with Senator Chris Dodd (D-CT). I am sure both individuals cataloged our messages along with the many others received that day, but who knows what one contact might be a catalyst for future change. That is the excitement.

In the front chairs were families there to share their challenges in obtaining and retaining insurance and their gratitude for the new provisions. In the second tier seats were insurance commissioners and senior insurance executives there to hear the stories of their customers’ experiences. Those stories were quite moving. Camera shutters noticeably quickened as each storyteller gave way to the emotion of his or her experience.

President Obama shared his remarks after a few of the attendees tell their stories. The proceedings drew to a close. The president paused as he departed to speak to a child and his family, drawing a little closer to their story. I joined the throng venturing out to catch cabs and planes, uplifted for the moment in being part of the journey to bring better health care to all children.

Here Come the Regs!

Since the enactment of health reform, we have been saying that there will be an onslaught of regulations that will need to be promulgated to implement all of the provisions. And so it begins… on May 13, the administration released a rule that implements the health reform provision that allows children to stay on their parents insurance until they turn 26.

The requirement that health plans providing dependent coverage continue that coverage until age 26 is one of a series of private health insurance reforms that will be implemented over the next few months. Another regulation that should be released soon would prohibit insurers from denying coverage for children because of a pre-existing health condition. These insurance reforms are important for children and children’s hospitals because they ensure that many children and young adults will have a more continuous source of health insurance coverage. Keeping more children on private insurance may also relieve some of the pressure on state Medicaid and Children’s Health Insurance Programs.

Highlights of the dependent coverage interim final rule include:

• Requires health insurance plans that provide dependent coverage to provide coverage to children to age 26;
• Prohibits plans from conditioning dependent coverage on student or marital status, residency, financial support or other factors; and
• Prohibits insurers from varying the benefits or cost sharing for coverage for older dependents.

Comments are due on this rule by 5:00 p.m. on August 11. For more details on this rule, please see the N.A.C.H. summary.

The Struggle to Secure FMAP

By Camie Corrigan, assistant director, federal legislative affairs

After the earlier blog post, Congressional Action on FMAP is a “Must Do”, the future of this critical extension of the increase in the federal government’s share of expenses for state Medicaid programs across the country has become uncertain. Last week was tough for me—not only did my pick for American Idol lose, but the extension of FMAP was taken out of a moving legislative vehicle in the House of Representatives. Luckily, I had a long weekend to recover from my disappointment.

Here is a recap: 
Just before the Memorial Day holiday triggering the Congressional week-long recess, the House spent days negotiating the provisions of H.R. 4213 "The American Jobs and Closing Tax Loopholes Act of 2010.” This package of tax extender provisions was critical to children’s hospitals because it contained a six-month extension of the American Recovery and Reinvestment Act funds for the Federal Medical Assistance Program (FMAP). These funds will expire in December of this year and the absence of this federal investment has left states desperate to fill mounting budget gaps on the back of Medicaid.

During the last two weeks, the timeline of when the House planned to vote on H.R. 4213 changed daily. As the Memorial Day recess loomed, Members of the Blue Dog Coalition—fiscally conservative House Democrats—raised serious concern about the level of deficit spending contained in the package and urged House Leadership to trim it down. The Leadership had struggled all week to whip enough votes needed to pass H.R. 4213 and continued to come up short.

In a last minute effort late last Thursday evening, the House amended the extender’s package, divided the bill into two, and removed the provision to extend the enhanced FMAP funds. The legislation was passed in the House without the FMAP extension. The Senate then adjourned on Friday morning and left Washington to head home for the Congressional recess. Several provisions in the package voted on by the House expired on June 1, 2010, which will likely prompt the Senate to take quick action when they return Monday, June 7.

What can we do now?
We are currently working with children’s hospitals across the country to ask the Senate to include the FMAP extension in their version of the bill. The FMAP extension is vital to children’s hospitals and their patients. As we have noted in our other blogs on this topic, without the extension of these funds, states will need to make additional significant cuts to their Medicaid programs. These cuts will impact Medicaid providers and the beneficiaries, including millions of children, who rely on this program for their health insurance coverage.  We all need to raise our voice by: 1) Asking our Governors to express their support for FMAP with their Senators; and 2) Asking our Senators to make sure that the FMAP extension is included in the Senate bill.

From Diapers to College Applications . . .the Journey with a Pediatric Specialist

by guest blogger, Ginger Dosedel, mother of 2010 Family Advocacy Day All-Star, Michael Dosedel

When my son was diagnosed with cancer at age three, it was frightening and overwhelming. We were sent to a pediatric specialist focusing on hematology/oncology. At the time, I had not fully appreciated pediatric specialists. I have come to have a much more profound appreciation for the specialists and specialties that deal specifically with children’s medical needs. 

Through the journey there were a plethora of suggestions from well-meaning friends and relatives. Most of these suggestions were homeopathic or alternative medical solutions. All of which are approved for adults. The problem with applying these methods to children is that they are not little adults--they are children.  As such, they need different approaches and care. For instance, if you irradiate an adult’s femur there are very few side effects. However, radiation affects children differently. My son has gone through over 30 surgeries and as a result of his radiation treatments, deals with the life-altering effects on his body. Shark cartilage can be helpful for adults who get cancer because it stops the growth of nerves. This same alternative is deadly in children whose bodies are still growing and require the nervous system to keep up! Much thought must go into the treatment of children simply because their bodies are perpetually changing. Their treatment must accommodate these changes.

Pediatric specialists have been following my son since his infancy. They have followed him through his early childhood years and school age years and now as he transforms from a young man into the young adult he will become. They have followed him from diapers to college applications. Things that are important in his treatment have been as extreme and diverse as the stages of his life. Part of their battle has been to educate me on what is important in his health care at each stage and to make sure that, as Mike grew up and matured, he understood his disease, its side effects, his health care options and how to advocate for himself. This advocacy has been in many areas including the effects of his medical care on his education.  Mike has grown into a young adult who can talk with his physicians and take part in his health care due to this process of growth fostered by his medical staff. There’s more involved in working with children than just treating a disease --pediatric physicians have a formative impact on their patients as they grow and mature.

Providers of care to children require expert empathy and understanding of family dynamics. When you enter into pediatric care you have to treat the entire family, not just the patient. Parents, siblings, even grandparents are deeply involved in a child’s care and treatment outcome. There are so many emotions involved when your child is ill and the tiniest thing can have a profound effect on a tough situation. Pediatric specialists and children’s hospitals are wonderfully aware of and sensitive to this dynamic. The children’s hospital network works, in a comprehensive manner, to make the entire family comfortable and engaged. There is a coordinated network of physicians, specialties and staff who work to treat the entire patient and family. From pediatric specialists to considerate nurses to child life staff to volunteers, everything that can be done to coordinate care of mind, body and soul is attended to-- no detail is left unattended. The entire children’s hospital is geared to protect the sanctity of childhood and family while promoting the health of its precious charges!

Mike’s heroes are largely comprised of people he’s worked with in the medical field. I couldn’t ask for better role models for my child. People who understand the importance of providing medical care to those who can’t fight for themselves and whose disease or illness is further complicated by the continuing changes should be emulated. I hope that my son, having been surrounded by this loving, empathetic, concerned, broad thinking and caring environment his whole life, grows up to have these personality traits himself.