Kids' Health Blog

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

Last week, Heather and Tim Gillen and their two children, Ally (12) and Nate (10), traveled to Washington, D.C., to meet with elected officials and to advocate on behalf of issues that are critical to children’s health.

The Gillens traveled as representatives of Children’s Hospitals and Clinics of Minnesota. Ally has been undergoing treatment at Children’s for Dermatomyositis, a rare and life-threatening auto-immune disease.

While in D.C., the Gillens met with members of Minnesota’s Congressional Delegation and asked them to protect two programs that are critical for children:

1. Medicaid – The single largest payer of children’s health care in the country, covering more than one in three children
2. Children’s Hospitals Graduate Medical Education Program (CHGME) – A program that is critical for providing support and training for pediatric specialists

The Gillens spent three days in the nation’s capital, and they sent back the following account of their journey:

July 23rd, 2011

We are here! The Gillens have arrived in Washington, D.C.! We are so excited to be here to represent Children’s Hospitals and Clinics of MN at NACHRI Family Advocacy Days.

July 24th, 2011

The morning started off with a visit to the Smithsonian Museum of Natural History. The building itself is breathtaking and the exhibits were amazing. Ally especially enjoyed the Egyptian mummy exhibit as she studied Egyptian history last year in school. Nate loved the mammals exhibit.

In the afternoon we attended the IMAX show, “Born to be Wild.” The show was about two extraordinary women who have devoted their lives to helping animals. One saved baby orangutans in Borneo and the other saved baby elephants in Kenya, all with the goal of restoring their health and returning them to the wild. As I watched the show I with struck with the thought that this is the reason we are here in DC. We are advocating for children so someday they too can grow up to be healthy and successful.

I have decided D.C. is a good place to be if you have Dermatomyositis like Ally does. She can stay out of the sun and in these cool marble buildings without worry.

Tomorrow we begin our NACH journey. We are excited to share our story and help make a difference for all kids.

July 25th, 2011

This morning began with our radio interview. Ally and I spoke with WYRQ-FM in Little Falls MN. We shared that we were in D.C. to represent Children’s and to put a face to critical issues, especially surrounding Medicaid and the Children’s Hospitals Graduate Medical Education Program.

We had a wonderful lunch with the other families. It was the first time we were all together and meeting other families from around the U.S. was amazing. Ally got to share her own personal NACHRI trading card with the other children in attendance. They had such fun trading cards and getting to know each other better.

In the afternoon we had a family briefing session about the legislative meetings the next day. After the meeting we had a special surprise guest – Miranda Cosgrove from the Nickelodeon Show “iCarly” came to sign autographs and have pictures taken with all the kids – so fun and exciting! The kids LOVED meeting a celebrity.

Afterwards we headed out for a tour of the Capital with special tickets from Rep. Paulson’s office. It was great to hear about all the behind-the-scenes facts about the Capitol building. It is a huge place and I do not know how you would not get lost there. I suppose it is kind of like the hospital and sooner or later you just figure it out.

Our evening concluded with a wonderful party sponsored by NACHRI for all the families. NACHRI sure knows how to make each and every one of these kids feel welcomed and special (siblings included). For Tim and I, it was nice to be able to talk with other families who have also experienced health care crises with their children. You often feel so alone, no one really understands, but in that room everyone in their own way completely understood.

Tomorrow is our big day! We hope that we can make a difference with our story the way families have for years before us. I keep thinking about the fact that 3 years ago, as we were experiencing our own life turning upside down, another family was in DC sharing their story and making a difference for us.

July 26th, 2011

Our morning started out bright and early with a great send-off breakfast. Everyone looked so great all dressed up and ready for their legislative visits.

We had a very full day of meetings including:

•  Senator Klobuchar – This was our first meeting and the first time telling our story on Capitol Hill. Ally was a little shy and mom was a little teary eyed (I know, I am sure those of you who know me can’t believe I cried. I am just hoping the day will get easier each time we re-live the story). Good thing Dad was there to take over and help fill in the pieces. Senator Klobuchar invited us into her office and even had a Target Field book on her coffee table that she talked to the boys about (Nate keyed in on that right away).

• Representative Paulsen – We meet in Rep. Paulsen’s office and Ally again shared her story. The part of the story that Ally loves telling the most is about the therapy dogs and how they made such a difference for her. Ally brought along a scrapbook of her time in the hospital and the therapy dogs and Rep. Paulsen was especially interested to see what she had created. He asked questions and looked at all of her pictures.

• Representative McCollum – We meet with her Legislative Assistant and were briefly able to see Rep. McCollum before she left for another meeting. She was gracious and offered that if we needed anything while we were in DC to just let them know.

• Representative Walz – Who found a last minute break in his schedule to meet with us in person.

• Senator Franken – This was our last meeting of the day. For those of you who do not know, Senator Franken has his own office dog whose name is Blaine. He and Ally had an immediate connection. They both believe in the healing powers of our furry friends.

We also met with staff representing:

• Rep. Bachmann

• Rep. Peterson (whose office is full of animals including a huge elk on his office wall! He also had a framed picture on his wall that a child at Children’s had painted)

• Rep. Kline

• Rep. Ellison

• Rep. Cravaack

As our day came to a close, we were hopeful for the difference that our story and the stories of 39 other families doing this same thing on this same day in Washington DC might make as these lawmakers move forward with the tough choices regarding budget cuts.

We continue to hold tight to the fact that this happened to Ally for a reason and all of this is part of that plan.

Good night from D.C!

The Gillens

After spending the better part of this past weekend watching the legislative sausage being made (and spending a few too many late nights at capitol), I have a few observations to share.

First, as much as its convenient to grouse about politicians, the fact is they have very hard jobs that they do in a very honorable way.  I have the luxury of focusing on health care issues, but the average legislator, in addition to knowing about health care also needs to know agriculture policy, tax policy, economic development issues…and the list goes on.

Second, the challenges facing our state are enormous.  Not only do we have a budget deficit this year, we’ll have a huge one waiting for the new incoming governor next year.  And the range of perspectives among lawmakers (and the public) on how to best proceed moving forward are really quite vast.

On the one hand, Minnesotans are justly proud of the investments we’ve made over the years in education, health care, the environment and other areas.  Many legislators and policymakers feel passionately that we’ve backslid in some of those investments the past few years, and would like to, at a minimum, stop what they consider to be additional slippage.  On the other hand, other policymakers feel just as passionately that our investments have to match up with our means, and that the state spending should be restrained.  In a time of deficit, these two perspectives can be very hard to reconcile, and the process of trying to come to agreement can be messy.  And without good information, sometimes decisions can be made that have unintended impacts.

This is where advocacy can play an important role.  We’ve been working this session to help to educate lawmakers about the importance of Medical Assistance (MA) to pediatric hospitals.  Let’s face it: legislators face tough choices this year in Minnesota—without new revenue, they have to do the best they can within existing resources to make the best policy possible.   That can mean reducing MA and other payments to health care providers like Children’s.

Unfortunately, across the board cuts to MA payment rates to hospitals do not have the same across the board impact.  Certain providers (like Children’s) see much higher numbers of MA enrollees than other providers, and so MA cuts hit them harder and they bear a disproportionate impact.  Helping lawmakers understand this disproportionality can help them think about ways to remedy or mitigate it.

While the cold reality is that sometimes, especially in tight budgetary times, legislators may not be able to fully address the concerns of high Medicaid providers, our goal is to continually help them to understand the impact of the decisions they make on child health so that they can make the best public policy possible for Minnesota.

Scott Leitz is the director of child health policy and advocacy at Children’s. Read more about him here.