Category Archives: Advocacy and Health Policy

Mark’s story: Making my voice heard

By Mark Olson

Mark, middle, cuts the ribbon at the opening of the new teen lounge.

I was born with transposition of the arteries in my heart and had surgery to repair them when I was four days old. In fifth grade, I had another surgery to repair a narrowing of my aorta. And in November 2010, I got a pacemaker. It’s possible I’ll have another surgery in a few years to make my aortic valve stronger because it’s expanding and beginning to tear.

I’m only 18.

Given the number of medical issues I’ve faced during my short life and still face, I’ve learned how important it is to advocate for yourself in the hospital. It’s important for a few reasons. First, your doctors and nurses then know what’s going on with you and can help you. Second, you can help the hospital itself improve.

One of the ways I advocate is by participating in the Youth Advisory Council (YAC) at Children’s Hospitals and Clinics of Minnesota. I’ve served on YAC for three years. I love Children’s, but I joined YAC because I thought I could make the hospital even better.

I believe I’ve made a difference in the lives of patients at Children’s. One way I’ve done that is by helping with the creation of the new teen lounge on the Minneapolis campus.

At meetings, I’m not one to be shy. I’m always asking questions. When I know a friend is going to the hospital, I ask him or her to give me feedback. How was the visit? Could Children’s have given better care? How? I bring the answers back to YAC.

Someday, I see myself advocating for others. And it’ll be at the bedside. I’m interested in going to medical school and specializing in cardiology. After my years of experience being a patient and a YAC member, I think I’d bring a unique perspective to the medical field.

I often tell people, “If you want something done, the only way people can know you want something done is to tell them. You’re the only person stopping something from happening.”

Mark Olson, 18, is a Youth Advisory Council Member at Children’s Hospitals and Clinics of Minnesota and a patient.

Addressing preemie care head on in 2013

By Dr. Ellen Bendel-Stenzel

As the Star Tribune so beautifully illustrated with its Thanksgiving cover story, “Home After 98 Days In Preemie Land,” the issue of prematurity is a heart-wrenching and persistent challenge for doctors and parents-to-be.  Preterm birth can, and does, affect every race, ethnicity, religion, age, socioeconomic status and demographic.

Here in the Upper Midwest, more than 200,000 babies are born every year. And about 22,000 of those babies or little more than 10 percent are born premature. However, as a preterm infant, you couldn’t ask to be born in a better place than Minnesota. We have some of the highest survival rates in the world, and yet we received a “B” on the March of Dimes 2012 Premature Birth Report Card.  Why?  Because even though an infant born beyond 28 weeks gestation, or 7 months of pregnancy, has a nearly 100 percent chance of survival, these infants still remain at risk for respiratory problems, feeding issues, developmental delays and behavioral and social disabilities.

Unfortunately, the amazing medical progress we’ve made over the past 25 years, which lead to the improved outcomes for so many premature infants, has begun to plateau. Now we as health care providers need to take the lead and drive future improvements.

There will always be high-risk pregnancies, and ensuring the best outcomes for these scenarios is not dependent upon reducing the prematurity rate alone.   We need to be proactive and provide optimal care to both mother and baby, so that we can decrease the incidence of prematurity and improve the outcomes of those born early or with complex medical conditions. In short, we need to address the needs of the infant long before a mother’s due date.

In early February of next year, Children’s Hospitals and Clinics of Minnesota and Abbott Northwestern Hospital will open The Mother Baby Center in Minneapolis. It will be the first of its kind in the Upper Midwest, and one of only a few in the nation where mother-baby care is fully integrated. This new Center will bring together maternal and infant specialists, with the understanding that every pregnancy has the potential to be high risk.

With a proactive approach, the goal is clear: optimize care from conception to delivery.  This means the sharing of information across all nine months of the pregnancy whenever possible.  It means providing quick access to specialists when concerns for the health of either the mother or baby arise. It means collecting data to look at the root cause of prematurity in our own community.  It means collaborating in clinical trials that start at the first obstetrical visit and end in the pediatrician’s office at school age follow-up.  And it means continuing to incorporate the latest technologies and therapies on the Newborn Intensive Care Unit (NICU), while simultaneously measuring their effects and proving their validity.

While simple in theory, these are lofty goals that are difficult to implement and execute, but are well worth the effort.  As physicians we must continue to set the bar high and help moms achieve term delivery whenever possible, while at the same time improve the care for the babies that are born early.  In doing so, we’ll create a recipe for success that will provide enormous benefits to Minnesota babies and families.

Dr. Bendel-Stenzel is a neonatologist and co-director of clinical research for the Newborn Intensive Care Unit at Children’s Hospitals and Clinics of Minnesota in Minneapolis.

Making democracy work for kids’ health: a letter to first-time voters

Dear first-time voters,

You’ve been hearing about the election for months. Maybe you’ve already registered to vote (if not, no worries, you can register at the polls). All that’s left is to wake up next Tuesday morning and head to your local polling place (need help finding it?)

That’s right, next Tuesday, Nov. 6, is Election Day. For many of you, this is the first time you’ll be able to vote. As a new voter, you can bring the issues that matter most to you and your family right into the booth. When you vote, you can be a voice for kids.

How does that work?

Making sure that elected officials help protect and promote children’s health means that we need to participate in the democratic process and speak up for the issues that matter to us. Voting is a critically important part of this advocacy. Your vote matters and the Children’s Advocacy and Health Policy department can help by keeping you up to date on some of the most important policies that affect kids’ health.

Why do young advocates matter?

Last year, Children’s Hospitals and Clinics saw more than 120,000 children and teens. That’s more than the entire city of Rochester. Unfortunately, the majority of them can’t vote. They can’t cast a ballot for the person they think will protect them, and you, the most. But you can.

You are the one with the experience, who knows what’s important to children who are sick or to the family of someone who is. Use this opportunity to advocate for all those who can’t advocate for themselves.

And every vote counts. In fact, during the 2010 election, three races in Minnesota were decided by fewer than 100 votes. If 100 Children’s patients were able to vote, it could have changed the result of the election.

So how do elections impact you?  

Every year, our elected officials consider laws that directly affect you. In the last five years, laws regarding seatbelt use, concussion safety and smoking in restaurants have all been passed at the state level. Legislation at the federal level is also extremely important: in 2012 a bill that would help address drug shortages was passed into law. The impact of this law on kids’ health is big: many kids at Children’s depend on those drugs for life-saving treatments.

In addition, legislation is often considered that impacts the funding we receive to train doctors and nurses that care for our kids, as well as our ability to offer all the great programs we currently provide like the Arts and Healing program.

The Children’s Advocacy and Health Policy department has great information on all the issues that affect Children’s Hospital, from funding to training our doctors and nurses to childhood obesity initiatives.

Get ready to vote

Now it’s time for you to go out and make a difference. Here are some resources that will hopefully make the voting process easy and seamless for you:

We want to know how your first experience at the polls went! Tweet us @ChildrensMN or post on our Facebook page with a photo of you wearing your “I voted” sticker and let us know what it was like.

Continue to be a voice for children

After Election Day, you can stay engaged by joining Children’s Advocacy Network. We make being informed easy: You’ll get an alert whenever your involvement can make a difference! You’ll also get periodic updates on progress on issues and how your elected officials voted on measures before them.

Wishing you the best of luck,

The whole Advocacy and Health Policy team: Anna Youngerman, Kelly Wolfe, Katie Rojas-Jahn and Julia Miller

Family Advocacy Day: A Q&A with the Johnstons

John, Nancy, Mike and Emma Johnston recently traveled to Washington, D.C., for Family Advocacy Day. In its eighth year, the Children’s Hospital Association 2012 Family Advocacy Day brings children’s hospitals patients and their families to tell their stories to lawmakers on Capitol Hill. In 2011, Mike, a Children’s patient, was diagnosed with a cancerous Germinoma tumor.

Upon his family’s return from a whirlwind tour of our nation’s capital, John answered a few questions about his family’s experience participating in Family Advocacy Day.

Mike, Emma, John and Nancy met Sen. Al Franken during Family Advocacy Day.

Q: Why did you share your story on Capitol Hill?

A: We shared our story because it was important for our legislators to put a face with a budget line item.  Our family does not want any other child to suffer waiting to receive care. We as a nation can’t afford to balance our budget on the backs of children.

Q: Do you think your story caught lawmakers’ attention?

A: Our story was very compelling. We had to wait for Mike to see a specialist for several months before we were ultimately told to go to Children’s.  Every legislator we spoke with agreed that this was unacceptable.  It is important for them to see the human impact of budget changes or cuts.

Q: What kind of reception did you get from the Minnesota delegation?

A: The Minnesota delegation was wonderful.  The four specific legislators we met with were; Reps. Betty McCollum and Eric Paulsen and Sens. Al Franken and Amy Klobuchar.  They were all up on the issues and understood our dilemma as parents.  They all agreed that this is an extremely important issue, and they vowed to keep up the fight.  The staffers we met also gave us ample time to share our story.  Rep. Paulsen commented on the trading card Mike gave him, so it was very important to leave something behind with our lawmakers.

Q: In addition to taking in the incredible sights of Washington, D.C., did you take anything away from your experience?

A: For our family, it was amazing to see how our government actually works.  It is very inspiring to know that a single family can make a difference in public policy. We’re a family that gives back to our community and have already offered our services at the state level.  We must stand up for children since they are our future. We know all too well the importance of excellent, timely care.  With any cuts to these programs, lives can be at risk.  We met so many wonderful people at Family Advocacy Day and would strongly urge others to do the same.  Our lives have been forever changed in a very positive way because of the role we were able to play.

John blogged before his family traveled to Washington, D.C. To read that post, click here

More kids covered

This is a post by Children’s Health Policy and Advocacy team. They’re nonpartisan and proudly serve as child health experts and as a resource for our elected officials. Follow Children’s Policy and Advocacy staff on Twitter.

Approximately 16,000 children will now be insured and have access to healthcare thanks to a finally implemented 2009 law. That is great news for kids and their families.

The healthcare expansion will cover working families who make between 150 percent and 200 percent of the federal poverty guideline(FPG) and will improve their access to care and preventative services. The new law eliminates the current four-month waiting period previously required and will allow every child under 18 to be eligible for MinnesotaCare, Minnesota’s subsidized insurance program for working families.

Those children under 200 percent of the FPG will be eligible for MinnesotaCare without premiums. Prior to the changes, a family of four earning less than $46,000 would have to pay premiums of up to $70 per child in order to participate in MinnesotaCare.

The new healthcare expansion is estimated to cost $11 million a year when fully implemented with the federal government covering half.

While this is certainly great news for the newly covered 16,000 children, officials estimate there are anywhere from 71,000 to 84,000 children who still lack health coverage. Minnesota is also the only state in the country that saw an increase in the number of children covered by health insurance last year, dropping in rankings to 27th in the country. According to the Annie Casey Foundation 2012 Kids Count Data Book, Minnesota also dropped from second to fifth in the nation in the overall well-being indicators for children.

While we applaud the new law and successes in getting more kids covered, it’s clear there is still a lot of work to do. Every child deserves a chance to be healthy.

To read the entire Kids Count Report, click here.

The Johnston family goes to Washington

This is a guest post by John Johnston, dad to patient Mike Johnston, who was diagnosed with a tumor in 2011. His family will be in Washington, D.C., next week for Family Advocacy Day. In its eighth year, the Children’s Hospital Association 2012 Family Advocacy Day brings patients from children’s hospitals and their families to tell their stories to lawmakers on Captiol Hill.

The Johnstons

On April 18, 2011, we took our 13-year-old son Mike to Children’s in St Paul. That day, our family began receiving treatment from Children’s. It turned out that Mike had a cancerous Germinoma tumor that was blocking the flow of cerebral spinal fluid. The fluid was building up in his skull, putting pressure on his brain and causing him to have tremors and headaches. As we began Mike’s cancer journey, it became obvious to our family that Children’s not only treated the patient, but they treated the entire family. Every staff member who came into our room introduced themselves to all of us, including 7-year-old Emma. We felt secure with the staff since they all made time for us and made us feel like we were their only patients at the moment.

Throughout Mike’s treatment, several important events were planned. The first was the American Cancer Society’s Relay for Life in White Bear Lake, Minn. Mike was one of the featured speakers. The oncology team scheduled chemotherapy and other appointments to make this special event possible for Mike and our family. The second major event for Mike that summer was his junior high school trip to Washington, D.C. This was an opportunity he couldn’t pass up since the teacher in charge was Mike’s favorite teacher and helped Mike get passionate about history. Mike enjoyed the monuments and museums in our nation’s capital and was able to take it all in despite his low blood counts.

Throughout our family’s journey with Children’s, we all felt blessed to have this institution charged with our son’s care. We felt so proud to have Children’s in our life that our family made a commitment to give back. Mike is now a member of the Youth Advisory Council, and my wife and I participate in the Families as Partners program. This all led to the upcoming opportunity for our family to travel to Washington, D.C., to advocate on behalf of Children’s. We’re very excited for this chance to give back. We even accepted this opportunity knowing that we would travel on Emma’s ninth birthday. We can hardly wait to see the sites as a family and meet many wonderful people who’ve also been touched by Children’s.

See you in Washington!

INFOGRAPHIC: The Weight of Childhood Obesity

At Children’s Hospitals and Clinics of Minnesota, we’re seeing a growing number of overweight and obese children. To address this new reality, we’re closely examining how we treat kids with weight problems. In a report we released today, we explore how Minnesota kids are faring in the battle against obesity. The earlier we tackle this problem, the better. To learn more, click here to see our report.

 

What the U.S. Supreme Court’s ruling on the Patient Protection and Affordable Care Act means for kids

This is a post by Children’s Health Policy and Advocacy team. They’re nonpartisan and proudly serve as child health experts and as a resource for our elected officials. Follow Children’s Policy and Advocacy staff on Twitter.

Today, the U.S. Supreme Court upheld most of the Patient Protection and Affordable Care Act (ACA).  In a 5-4 decision, the Court not only upheld the individual insurance mandate, but upheld a host of other provisions important to Children’s.

With ACA intact, private insurance reforms for children will remain, including: children with preexisting conditions will not be denied insurance coverage; children who undergo expensive procedures will not have to worry about annual and lifetime insurance caps; and young adults can stay on their parents’ insurance up to the age of 26.  The law also authorizes, though does not fund, the formation of demonstration Pediatric Accountable Care Organizations, which are designed to improve and streamline care.

It is still unclear at this time how the Court’s ruling will affect the temporary increases in Medicaid reimbursement rates for pediatricians and pediatric specialists, as well as maintenance of the current Medicaid and Children’s Health Insurance Program (CHIP) coverage for children through Sept. 30, 2019.

The most substantive change arising from this decision is around Medicaid.  Expansion of Medicaid has been limited, and is now largely left up to states to implement. States may maintain pre-expansion eligibility levels and receive current levels of funding, or they may comply with the federal expansion requirements and receive the corresponding federal funding. This decision will make it all the more important to make sure we protect Medicaid funding at a state level.

More than just a playground: Nathan’s story

The following is a guest post from Kristen Spielman, the mother of a patient at the Woodwinds Clinic in Woodbury, MN.

Our son, Nathan, has had quite the journey since he was born 3 years ago. Many of you have walked a similar road. Just like us, you’ve cried, prayed, and rejoiced over your little one. I’d like to share our story with you and ask you to join us in helping Nathan, and other children with similar challenges, make even bigger strides than they are currently making in Physical, Occupational, and Speech Therapies.

The day Nathan was born 3 years ago, the doctors told us that there was something different about him. His high palate, droopy eyelids, adducted thumbs, and perhaps most significant, his extremely low muscle tone, were all indicators that Nathan had a genetic syndrome. He has logged many hours with the special education department of our school district and has endured numerous blood draws and brace- and helmet-fitting appointments.

Most important to his development, Nathan has worked consistently in physical therapy, occupational therapy, and speech therapy three times each week at Children’s Woodwinds Clinic in Woodbury, MN.

Last August, just before his third birthday, Nathan finally received a diagnosis. He has Multiminicore Disease, a rare genetic muscle condition in which his muscle cells will always only perform at a small percentage of normal function. As you can imagine, this affects EVERYTHING he does, from talking and chewing to gross motor skills. Nathan’s life will always be more difficult because of his disease, but his ability to communicate and perform daily tasks, quality of life, risk for falls, and movement is greatly improved through the therapies he learns and does at Children’s Woodwinds Clinic.

A unique opportunity has arisen at the Woodbury Clinic. An adjoining property right out the front door recently became available to Children’s. It was formerly the outdoor play area for a daycare. The current vision is for this area to be developed into a therapy playground.

For obvious reasons, one might think that such a playground would only be useful for Physical Therapy.  However, as the mom of a recipient of physical, occupational, and speech therapy, I can say with confidence, that it would benefit children receiving therapy in any of the 3 disciplines.

Megan Shepherd, a therapist at the Woodwinds Clinic, agrees. “A clinic playground would allow therapists to teach kids how to safely play and fully experience playgrounds at their neighborhood parks.”

The “work of play” is a child’s job. In my opinion, many of those “work hours” should be logged on a playground. Upon a child’s entrance to school, the playground will be an important learning space, second only to the classroom. Social skills, friendships, cooperation, and body awareness are only a few of the lessons that will be obtained there. How much better prepared will our children be for that environment if they know how to use a playground safely, effectively, and without fear?

Would you please join me in making it possible for this “Children’s” playground to be built?  Thank you for considering this opportunity. Your gift will bless Nathan, and in turn our family, and many other children and their families in countless ways for many years to come.

You can find more information about the project and make this playground a reality with a gift at GiveMN.

Changes to Newborn Screening Program will Hurt Kids and Community Health

A recent rulilng by the Minnesota State Supreme Court requires the Minnesota Department of Health to destroy all newborn screening blood samples after 71 days. This is a troubling setback for a program that has succeeded at improving public health and saving the lives of children.

The blood samples will no longer be stored for possible analysis if a child or a sibling develops a health issue beyond those 71 days. They will also not be made available for use in important tests about health problems like immune deficiency disorders or public health dangers.

As a geneticist at Children’s Hospitals and Clinics of Minnesota, I have seen firsthand how the newborn screening program saves lives. Our ability to detect rare and life threatening genetic conditions early on allows us to treat children proactively, in many cases saving their lives and allowing them to grow into healthy kids and adults. Storage of these samples is critical so we can go back when needed to these spots and test issues that emerge later in life or conditions involving relatives.

Here are just a few examples of why the availability of previously collected samples is important:

  • Newborn screening spots may detect patients with rare inborn errors of metabolism. The registry allows physicians to use the blood spots to confirm diagnosis. This confirmation prevents delay of necessary care or repeated unnecessary testing.
  • SIDS is the unexpected, sudden death of a child under the age of one. Typically a medical evaluation does not show an explainable cause of death. The newborn dried blood spot is the only available sample left to grieving parents and physicians striving to understand the cause of SIDS. If a second child in the family is diagnosed with a rare disorder, the family may request the blood spot to understand if the baby who passed away had the same disorder. Similarly, some infants with near SIDS present to an emergency room quite ill. If they are transfused with blood, the only way to get a repeat blood specimen that is untainted with anyone else’s blood products emergently is to obtain the newborn screening card.
  • For a child who has failed the hearing test, it is important to know if they were born with an infection called cytomegalovirus (CMV). In most people, children and adults, CMV causes a cold. It is only if the mother had CMV during pregnancy that the infection may cause congenital hearing loss. When a child has recognized hearing loss within the first year of life, the only way to know definitively if there was a congenital CMV infection would be to check the newborn screening card. Otherwise, it’s impossible to know when the infection occurred, in utero vs. later after the baby was born.

I hope that Minnesota can act quickly to save this program, and retain its leadership in the area of health screening and public health research. At the very least, before we continue destroying potentially valuable blood spots, let’s have a clear discussion about the impact of this action.

Once a blood spot is destroyed, we can never recover the information contained in the sample. We owe it to our kids, their parents and our communities to pause, evaluate, and communicate a clear direction forward that will allow health professionals access to blood spots. I trust that an informed discussion will point us to the right decisions and will allow us to maintain and improve upon this extremely valuable program.

 

Nancy Mendelsohn, MD
Medical Director – Genetics Clinic
Children’s Hospitals and Clinics of Minnesota