Category Archives: Advocacy and Health Policy

World AIDS Day: Getting to zero

Dec. 1 is World AIDS Day.

Fatumata, whose name has been changed, is a 15-year-old girl who lived in Eastern Africa all of her life before coming to Minnesota in 2010. She grew up in a refugee camp with her younger brother and sister and her parents. She had to take medicine every day, and sometimes she was sick. But mostly she liked to play with her friends and help her mother with the chores. Fatumata noticed that some of the people in the camp avoided her and her family, and she was not allowed to go to school with the other children. She didn’t know why.

Then one day, Fatumata’s father became ill and eventually passed away. Soon after, her mother became too sick to care for her and her siblings, and her uncle came to tell her that she would be leaving the camp to go and live with his family in the U.S. Fatumata cried because she did not want to leave her mother, but her mother told her that she would be able to grow and be healthy where she was going and that they would see each other again.

Q4_mighty_buttonSo Fatumata and her siblings came to Minnesota. It was cold and, at first, she didn’t understand what anyone was saying. Soon she was able to go to school for the first time, and she learned English, and she continued to take her medications and grow strong and healthy. Today, Fatumata knows why she takes medications. She knows the name of her disease and doesn’t fear her HIV. She has a dedicated medical team at Children’s who provide care and support to her and her family. Fatumata is looking forward to the day when she will be able to go to college and some day, have a healthy family of her own.

Dec. 1, 2014, marks the 26th anniversary of World AIDS Day. It’s an opportunity for us to come together to show support for people living with HIV and AIDS around the world and at home, to remember those who have died from this disease, and to commit to “getting to zero” in the fight against HIV: zero new infections and zero deaths from HIV and AIDS.

HIV today

Around the world, there are an estimated 34 million people living with HIV. About 3.3 million are children younger than 15. In addition, about 17.3 million children have lost one or both parents to AIDS and millions more have been affected by the epidemic. Every day, almost 7,000 people become infected with HIV and nearly 5,000 people die from AIDS. In 2011, 230,000 of those who lost their lives were children, according to UNICEF.

In the U.S., approximately 1.1 million people are living with HIV, and in Minnesota, just more than 7,500 of our neighbors, family members and friends are living with HIV and AIDS, according to the Minnesota Department of Health.

What is Children’s doing in the fight against HIV?

As the largest provider of care to HIV-infected children in Minnesota, we provide medical care to more than 100 children infected with HIV every year. Children come to us from all over Minnesota and the world. Many of the children in our care have been adopted from countries in Asia, Africa, Eastern Europe and the Caribbean. Many more are refugees and immigrants who may not be able to access treatment in their own countries. In addition to expert medical care, families can access specialized support services funded through the federal Ryan White CARE Act, including education, family case management and mental-health services.

What can you do?

1. Get tested, know your status. HIV testing is recommended as a routine part of medical care. Talk to your provider about testing.

2. Get connected, get support. If you are living with HIV, find out about the programs and services offered in your area to help you stay healthy and support you and your family in living with your disease.

3. Educate yourself about HIV. Learn how to prevent HIV infection and how to keep yourself safe. Can you answer these questions about HIV?

True or false?

1. HIV is a virus and AIDS is a bacteria.

2. HIV infection can be spread by hugging.

3. Some people have HIV and do not know it

4. There is treatment for HIV.

5. People who have HIV can give birth to healthy babies.

Quiz answers

1. HIV (human immunodeficiency virus) is a virus and AIDS (Acquired Immune Deficiency Syndrome) is the disease caused by the HIV virus. AIDS makes it hard for people to fight off other kinds of infections and illnesses and can make people sick.

2. False. You cannot get HIV from hugging or playing with other people with HIV. HIV can only be spread by direct contact with blood and some other body fluids through sex, sharing needles, or breastfeeding.

3. True. About 15 percent of people infected with HIV do not know they are infected with the virus. That’s why getting tested is so important.

4. True. We have great treatments and medications for people living with HIV that enable them to stay healthy and live a long time. We don’t have a cure yet, but scientists are hard at work on it.

5. True. When people living with HIV take their medications and see their doctors regularly, they have more than a 98 percent chance of having a baby born without HIV.

Bullied kids, bullies need our help

Children who are being bullied cannot learn, and children being bullies often need our help, too. (iStock photo / Getty Images)

Children who are being bullied cannot learn, and children being bullies often need our help, too. (iStock photo / Getty Images)

By Kelly Wolfe

October is Bullying Prevention Month: We can learn a lot from a llama.

“It’s not nice to be a bully.” Those were the words my 4-year-old said as we were sitting down for breakfast recently.

Pleasantly surprised that he was aware of this fact, I smiled and said, “That’s right. Who told you about bullies?”

“We read a book at school about the bully goat,” he said. “He was not nice.”

Those few simple words prompted a discussion about what a bully is, why it’s not nice to bully someone and what we should do if we see someone being bullied. And while a little part of me was sad that, at 4 years old, he needed to learn about bullies, a larger part of me was thrilled that education about bullies was happening in his school. The messages we try to teach at home were being reinforced by his teachers and classmates. Everyone was saying the same thing: bullying is not OK.

October is National Bullying Prevention Month, and this year’s campaign has focused on one basic principle: “The end of bullying begins with me,” a simple premise that if we can all just learn to treat each other with respect, dignity and the same kindness with which we want to be treated, there will be no more bullies.

The PACER (Parent Advocacy Coalition for Education Rights) Center spearheaded the campaign and coordinated efforts on bullying prevention, education and awareness nationwide. Their mission is to “expand opportunities and enhance the quality of life of children and young adults with disabilities and their families, based on the concept of parents helping parents,” including issues around bullying.

Subscribe to MightyWe know that 94 percent of children with disabilities report being victims of bullying, and, according to the 2013 Minnesota Student Survey, more than 70 percent of fifth-graders and 90 percent of 11th-graders report being bullied at school during a 30-day period. The Safe and Supportive Schools Act that was signed into law this year aims to address it.

It’s time that the conversation is elevated and that actions are taken to protect all of our kids. Children who are being bullied cannot learn, and children being bullies often need our help, too.

It’s never too early to start talking to your child about bullying. There are excellent books and resources out there. In addition to PACER, the Minnesota Department of Education has some tips for parents if they suspect their child is a victim of bullying.

“Teacher has some things to say: calling names is not OK.” We all can learn from Llama Llama and the Bully Goat. As parents, adults and role models to our children, we all have a responsibility to model acceptable behavior. And we need to do a better job of standing up for our kids, for all of our kids; because the end of bullying begins with all of us.

Kelly Wolfe is senior policy and advocacy specialist for Advocacy and Child Health Policy at Children’s Hospitals and Clinics of Minnesota.

On Election Day, stand up for kids

(iStock photo / Getty Images)

(iStock photo / Getty Images)

By Kelly Wolfe

Tired of the barrage of campaign literature, TV ads and round-the-clock media coverage about politics? The good news is the end is in sight. Even better news is that on Tuesday you finally get the chance to decide who should represent you in local, state and congressional offices. On Tuesday, you get to make a decision about who best represents you and your priorities. And on Tuesday, Children’s Advocacy and Health Policy department will be watching closely to see how the election will impact kids in our state.

Why does a children’s hospital care about elections? There are many decisions made at the state and federal levels that directly and indirectly impact our patients, organization and children in general. They range from the mundane but critically important – Medicaid, medical-education funding and access to pediatric specialty care – to those issues that impact many other children and families – early childhood development and education opportunities, school nutrition and mental health. The point is that on almost any issue that impacts kids the outcome of Tuesday’s election will matter.

So, what can you do? Learn about the candidates and cast a ballot for elected officials who will best serve and protect kids and go to the polls Tuesday. Your vote makes a difference. In 2006, there were several races that were determined by fewer than 100 votes. In one race, the outcome was determined by 37 votes.

Here is some information to help you make a difference. And if you need more, we always are here to help.

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

Subscribe to MightyContinue 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.

Kelly Wolfe is senior policy and advocacy specialist for Advocacy and Child Health Policy at Children’s Hospitals and Clinics of Minnesota.

The first 1,000 days: Brains are built, not born

Maxine Hayes, MD, MPH, speaks to an audience at Children's Hospitals and Clinics of Minnesota in September.

Maxine Hayes, MD, MPH, speaks to an audience at Children’s – Minneapolis in September.

Maxine Hayes, MD, MPH

Maxine Hayes, MD, MPH

By Maxine Hayes, MD, MPH

The first 1,000 days, from birth to age 3, have the most pronounced impact on a person’s life-long health and well-being. I had the privilege of discussing strategies to make the most of these first 1,000 days when I visited Children’s Hospitals and Clinics of Minnesota in September.

Children born today face the prospect of growing up less healthy, living shorter lives and being less equipped to compete and lead in a world economy than previous generations. For the first time, we are expecting less of our children and letting them down. We should do better, and the good news is we can if we work together.

The opportunity resides in how we impact the first 1,000 days of every child’s life. We know more now than ever about brain science, which shows that by age 3, 80 percent of our brain is developed. We also know that:

  • Brains are built (not born) over time – prenatally to young adulthood.
  • Brain development is integrated. The areas underlying social, emotional and cognitive skills are connected and rely on each other.
  • Toxic stress, in the form of poverty, poor nutrition, inadequate housing, exposure to violence and limited positive and nurturing behaviors, disrupts brain development and can have a lifelong effect on learning, behavior and health.
  • Positive parenting and creating the right conditions can buffer toxic stress and build resilience.

Subscribe to MightyFrederick Douglass once said, “It is easier to build strong children than to repair broken men.”  This is a motivating principle behind many states’ efforts to bolster early child development through policy and practice. In the state of Washington, this is our mission. State leaders are using a collective impact1 initiative to provide a structure for cross-sector stakeholders, including state departments, foundations, social service agencies and pediatricians, to forge a common agenda around the shared vision that all children in Washington will thrive in safe, stable, nurturing relationships and environments, beginning with a focus primarily on the first 1,000 days.

It all begins with a conversation. That’s why the discussions convened by Children’s among pediatric clinicians and state leaders are so valuable. It sends a signal that pediatricians and primary care providers as well as policymakers have important roles to play in this work. By working together and focusing on our youngest at the most critical points in time, we can change the course of life and set our children on a path toward good health and academic success.

Maxine Hayes, MD, MPH, is clinical professor of pediatrics at the University of Washington School of Medicine.

Reference

1 Stanford social innovations review 2013, “How collective impact address complexity” — John Kania and Mark Kramer.

Getting ready for school… 5 years in advance

(iStock photo / Getty Images)

Eighty percent of brain growth occurs by age 3. (iStock photo / Getty Images)

Gigi Chawla, MD

Gigi Chawla, MD

By Gigi Chawla, MD

As summer winds down and kids start filling desks and lining hallways at school, it’s a good time to talk about child development. And while this year is the first year that all children will have access to all-day kindergarten, I’m also reminded that not all children arrive to school ready to learn. In fact, getting a healthy start begins long before kids step onto a school bus. As a mom and pediatrician, I know that healthy development and school readiness occur well before children are reading and writing. They occur in those early years, as children are beginning to experience all of their firsts – first smile, first word, first step.

As advocates for children, Children’s Hospitals and Clinics of Minnesota recognizes that health and wellness play a critical role in being ready to learn and that we have a part to play in helping children get a strong start – not only in school but in all areas of life.

We have embarked on an even more deliberate focus on early childhood development, and know that it’s the earliest years in life when the most difference can be made. Consider:

  • Eighty percent of brain growth occurs by age 3.
  • In early childhood, physical, cognitive, emotional and social development occurs at a rate that far exceeds any other stage of human life. This has a significant impact on long-term health and wellness.
  • Toxic stress – including poverty, poor nutrition, inadequate housing, exposure to violence and the absence of attentive caregivers – can be devastating to an infant’s developing brain, thus setting children far behind before they’ve had a chance to start.

Subscribe to MightyGiven the obstacles to healthy child development, we at Children’s decided we needed to venture beyond our walls to address these issues and work with others engaged in protecting the health and well-being of children. We’ve engaged in an effort to build greater awareness about the importance of a child’s development in the earliest years and are working towards identifying collaborative methods to reach more children at this critical time in life.

Every day, I have the privilege to care for children when they are sick and to support ways to make them healthy. And that includes engaging in and elevating the discussion around the value of investments in programs that give kids the start in life that they deserve; please join us.

Read more about the importance of early childhood development and our investment in our children. Read our paper, “Foundation for Life: The Significance of Birth to Three,” to learn more about our efforts.

Gigi Chawla, MD, is senior medical director of primary care for Children’s Hospitals and Clinics of Minnesota.

2014 Kids Count Data Book: It’s time we listen

iStock_000008083181Small

Nearly 50 percent of all African-American children in Minnesota lived in poverty in 2012, along with 38 percent of American Indian children, 30 percent of Hispanic or Latino children and 20 percent of Asian children — this compared to 8 percent of white children. (iStock photo / Getty Images)

By Ryan Earp

News usually is framed in two ways: the good news and the bad news. And while good news is always great to hear, it’s important to listen to the bad, especially when it comes to how well we are serving our kids. The annual Kids Count Data Book released last month reported good and bad news for Minnesota, and it’s time we paid attention to both.

The report produced by the Annie E. Casey Foundation and the Children’s Defense Fund is highly respected for its state-by-state assessment of children’s health, education and overall well-being.

A snapshot of Minnesota kids

While on the surface many headlines from around the state highlight good news in the report – that “Minnesota is No. 5 Best State for Children” and that “Minnesota Ranks High in Kids’ Well-Being,” – their underlying messages tell us that there is much work to be done surrounding children’s general welfare as more Minnesota kids are living in poverty. Here’s a snapshot of the Minnesota rankings.

Previously ranked as high as seventh in the nation’s overall health ranking, the 2014 Kids Count Data Book finds Minnesota to have fallen to the 17th among all states. In a recent interview with the Star Tribune, Stephanie Hogenson, research and policy director at the Children’s Defense Fund – Minnesota explains, “As one of the healthiest states overall in the country, and with globally renowned health care, Minnesota should not be in the middle of the pack for child health. … We’re no longer seen as a leader in child health as we once were.”

What happened?

Policy experts point to the increase in poverty as a determining factor in the state’s declining health outcomes. According to the report, “Growing up in poverty is one of the greatest threats to healthy child development. … [It] can impede children’s cognitive development and their ability to learn. It can contribute to behavioral, social and emotional problems and poor health.”

Minnesota’s rising rates of child poverty are exacerbating racial inequities that are among the worst in the nation, because communities of color and native communities are disproportionately impacted. Nearly 50 percent of all African-American children in Minnesota lived in poverty in 2012, along with 38 percent of American Indian children, 30 percent of Hispanic or Latino children and 20 percent of Asian children — this compared to 8 percent of white children.

The report goes on to state “the biggest challenge in an era of increasing inequality in income and wealth is the widening gulf between children growing up in strong, economically secure families within thriving communities and children who are not.”

Subscribe to MightyA call to action

Minnesotans are taking note. Efforts are under way through organizations and initiatives aimed at providing our children and families with economic stability, affordable housing options, and access to high-quality child care and development opportunities.

At Children’s Hospitals and Clinics of Minnesota, we are committed to helping all children lead healthier lives, and are actively involved in supporting efforts to address some of the economic and social determinants that have profound impacts on child health. We are hopeful that new policies, funding and programs will help lift our children out of poverty. You can be a part of our work by joining our advocacy efforts.

See a quick snapshot of how Minnesota ranks in other areas of the report.

Ryan Earp is an intern with the Advocacy and Child Health Policy team at Children’s Hospitals and Clinics of Minnesota.

Children’s represented at Family Advocacy Day in Washington

By Kelly Wolfe

In late June, Children’s participated in the Children’s Hospitals Association Family Advocacy Day.

The Christiansen family (Eleanor, Tyler, Greta and Wes) joined families from across the country to advocate for funding and programming for children’s hospitals and children with special health care needs. The Christiansen’s used their experience at Children’s to educate and inform our U.S. senators and representatives on Capitol Hill. We were lucky to have them represent us!

Kelly Wolfe is senior policy and advocacy specialist at Children’s Hospitals and Clinics of Minnesota.

Family Advocacy Day 2014 in Washington, D.C. from Children’s of Minnesota on Vimeo.

Photo diary of the trip:

The Christiansens get inspired in front of the U.S. Capitol for meetings on the Hill. The weather was warm and breezy; a perfect day for a lot of walking.

The Christiansens get inspired in front of the U.S. Capitol for meetings on the Hill. The weather was warm and breezy; a perfect day for a lot of walking.

Washington, D.C., is full of wonderful sightseeing opportunities. The Christiansen family takes advantage of some free time by visiting all of the monuments.

Washington, D.C., is full of wonderful sightseeing opportunities. The Christiansen family takes advantage of some free time by visiting all of the monuments.

The Christiansens visit "Honest Abe." The passion they have for advocating for child health almost equals the size of the Lincoln Memorial.

The Christiansens visit “Honest Abe.” The passion they have for advocating for child health almost equals the size of the Lincoln Memorial.

Future presidents? We hope so! Greta and Wes take their turns at the president’s desk at the White House Gift Shop.

Future presidents? We hope so! Greta and Wes take their turns at the president’s desk at the White House Gift Shop.

Greta and Wes certainly are out of this world! They had a great time checking out the astronauts at the Smithsonian Air and Space Museum.

Greta and Wes certainly are out of this world! They had a great time checking out the astronauts at the Smithsonian Air and Space Museum.

Batman flew by to say a special hello to Greta and Wes at the Family Advocacy Day Celebration dinner. Complete with a band, dancing, caricatures, face-painting, photo booths and games, the event gave families one last chance to exchange trading cards and have some fun before a full day of meetings on Capitol Hill.

Batman flew by to say a special hello to Greta and Wes at the Family Advocacy Day Celebration dinner. Complete with a band, dancing, caricatures, face-painting, photo booths and games, the event gave families one last chance to exchange trading cards and have some fun before a full day of meetings on Capitol Hill.

The Christiansens pose with Congressman Eric Paulsen under his Minnesota-made canoe.

The Christiansens pose with Congressman Eric Paulsen under his Minnesota-made canoe.

After a special breakfast of Minnesota Mahnomen porridge in U.S. Sen. Franken’s office, Greta cozied up next to him as he listened to the Christiansens' moving story. It’s not every day you get to sit on a U.S. senator’s couch.

After a special breakfast of Minnesota Mahnomen porridge in U.S. Sen. Franken’s office, Greta cozied up next to him as he listened to the Christiansens’ moving story. It’s not every day you get to sit on a U.S. senator’s couch.

Eleanor talks to Congressman Keith Ellison about the importance of funding programs like the Children’s Hospital Graduate Medical Education (CHGME) program, which provides funding to train future pediatricians and specialists like the ones that treated Greta.

Eleanor talks to Congressman Keith Ellison about the importance of funding programs like the Children’s Hospital Graduate Medical Education (CHGME) program, which provides funding to train future pediatricians and specialists like the ones that treated Greta.

Making magic happen: The infant-toddler brain

Anna Youngerman is the director of advocacy and health policy at Children's Hospitals and Clinics of Minnesota and a proud parent of her 2-year-old son.

Anna Youngerman is the director of advocacy and health policy at Children’s Hospitals and Clinics of Minnesota and a proud parent of her 2-year-old son.

By Anna Youngerman

For many parents, sleep-deprived might be how we choose to describe the first three years of a child’s life — at least it has been for me. But as I look through the haze of too few hours of sleep, there’s also magic to these early years. I frequently find myself in a state of awe and wonder at my growing child. The first time your baby catches your eye and holds your gaze, the first time he says “mommy,” the cobbling together of phrases to describe his day and even the frustration-driven tantrums — those are all magical moments.

It turns out there’s a reason the awe-inspiring moments come fast and furious during these earliest years. The brain wiring is on hyper-drive:

  • 80 percent of brain development happens by the time a child is 3 years old.
  • 700 new neural connections are made every second in the first few years of life.

This naturally occurring development can serve as a springboard for a productive, healthy life. Yet, just as a magician must carefully prepare for a trick so it appears both astonishing and seamless, helping every child realize the powerful potential of these years also requires intentional support.

Inspiring action

Though our paper, “Foundation for Life: The Significance of Birth to Three,” we want to inspire more robust discussion and action around the value of investments in and attention to our youngest children. We want to invite the tough questions and – more importantly – be part of answering them:

  • What can we do, collectively, to reach the most vulnerable children?
  • How do we mitigate toxic stress factors that tear away at a child’s potential?
  • What’s the community’s role in ensuring that no child lacks the positive relationships so crucial to healthy development?
  • How do we build a coordinated system that focuses on what a child needs and not what the system needs?
  • Subscribe to MightyHow do we reach children at an age (0-3) when they often are cared for by family, friends and neighbors and not always tied to existing systems?

These aren’t easy questions, but just because they’re tough doesn’t mean we shouldn’t take them on and figure out how to work together toward getting answers. The stakes are just too high and the opportunity too great.

Like most parents, I’ll gladly navigate my sleep deprivation in exchange for giving my kiddo every opportunity he deserves. That’s the hope and dedication we want to inspire. I hope you’ll join us.

Anna Youngerman is the director of advocacy and health policy at Children’s Hospitals and Clinics of Minnesota and a proud parent of her 2-year-old son.

Children’s at the Capitol: Newborn screening comes to a vote

Update: Late Thursday night, April 10, we were disappointed to hear that the newborn screening vote scheduled for that day was unexpectedly pulled from the schedule. We fully expect that newborn screening will still be voted on this session, likely later in April. Help us make sure that legislators know how critical this program is for child health by contacting your state representatives (action link below)!


Today the Minnesota House of Representatives will be considering and voting on a bill to restore Minnesota’s newborn screening program, which is credited with saving more than 5,000 lives since its inception 50 years ago. We’ve provided the streaming video of the House floor session below, though the debate on newborn screening may not happen until later today.

Urgent action needed

Up until the House floor vote happens, you can contact your state representative and ask for his or her support on the Newborn Screening bill, H.F. 2526, authored by Representative Kim Norton. Taking action is easy, and it only takes a minute! This bill is critically important to newborn health and your legislators need to hear that you support this program today. (A couple things to note about the action page: 1. You’ll need to enter your full ZIP code (first 5 numbers + 4-digit extension) in order to connect with your state rep. 2. Use “MN” instead of “Minnesota.”)

What is newborn screening?

The program is simple: At birth, all newborns have a small blood sample collected through a heal prick. The blood spots are put onto a card and then tested for more than 50 genetic and chromosomal abnormalities. These tests are essential in detecting many serious and often hidden conditions, including some that, if diagnosed and treated early, can have a critical impact on the health of a child.

Why is this debate happening?

Over the past few years, the newborn screening program has been modified so that currently the Minnesota Department of Health can only retain blood spots for a short period of time before destroying them, possibly missing the window of diagnosis.

The problem is that there are many reasons these samples should be kept on hand, including: some conditions can take several months to diagnose; cards may be needed for reassessment at a later date; or they may be used for comparison when a younger sibling is born. Without long-term storage, we lose the ability to go back and review the samples when critical health questions arise.

Watch it live:

Watch live streaming video from uptakemnhouse at livestream.com

Video: Minnesota Senate debate over anti-bullying bill

Minnesota state capitol, Senate chamber

The Minnesota Senate will debate an anti-bullying bill Thursday, April 3, 2014.

Children’s at the Capitol: Minnesota Senate brings Safe Schools Act to a floor vote

Today the Minnesota State Senate will consider and vote on the Safe and Supportive Schools Act, a bill that would redefine Minnesota’s current 37-word law on bullying, one of the weakest in the country.

Last year, Children’s explored the many ways in which bullying affects kids. We found that:

  • Bullying is common in Minnesota: About one in seven Minnesota children are bullied regularly.
  • Bullying is bad for health: Children who are bullied are more likely than their peers to suffer from anxiety, depression, loneliness and post-traumatic stress.
  • Kids with special needs are bullied at high rates: In a recent study, 94 percent of students with disabilities reported experiencing some form of victimization.

That’s why Children’s supports passage of the Safe and Supportive Schools Act. We hope you’ll tune in to the live floor debate and watch as our state senators discuss, amend and vote on this bill. Don’t know who represents you? Find out now!

You also can learn more about our work on bullying and find helpful resources at childrensmn.org/bullying.

Watch live streaming video from uptakemnsenate at livestream.com