By Eric Dick, MNAAP Lobbyist
There’s an old yarn that states that elections have consequences. That’s especially true when the results are so surprising and dramatic, as they were in 2016. Donald Trump swept into the White House and, with his strong coattails in Greater Minnesota, the Senate Republicans surprised many by gaining control of the Minnesota Senate. Minnesotans have once again chosen divided government, with the GOP now holding both the House and the Senate, while DFLer Mark Dayton remains governor.
There are tremendous unknowns facing health care and children’s health – both here in Minnesota and Washington, DC. How will the Congressional Republicans seek to repeal the ACA? Will majorities in Congress seek to turn Medicaid into a block grant program? What might that mean for kids and their health here in Minnesota? Closer to home, can agreement between Governor Dayton and the GOP Legislature be reached to avoid a government shutdown once summer arrives? How will pressures from increasing health care costs impact access to care for young patients? What’s the fate of MNsure and MinnesotaCare? And will new majorities in the legislature seek to change laws governing newborn screening, vaccines, or minor consent? Simply put, it’s too early to tell on all of these questions.
The work that will dominate the legislative session here in Minnesota will be assembling a biennial budget, having received the Governor’s budget proposal in January. Legislators will craft their own budget in response and – if things work as designed – the two sides will negotiate a final budget sometime in May.
By Andrew Kiragu, MD, FAAP
Happy New Year to you! I hope that you all had a wonderful holiday season.
Please join me in congratulating two of our very own: Dr. Anne Edwards and Dr. Debra Waldron are soon taking up senior positions at the national AAP. Dr. Edwards was named senior vice president of Primary Care and Subspecialty Pediatrics and will lead pediatric practice-related initiatives and programs for AAP members. Dr. Waldron was named senior vice president of Child Health and Wellness. She will direct the AAP programs and initiatives related to child health promotion and safety, developmental pediatrics and preventive services, and children with special health needs.
I would like to especially thank Dr. Edwards for her years of service to our chapter, particularly for her leadership as president and most recently as chair of MNAAP’s policy committee.
We begin a year filled with potential challenges and a great deal of uncertainty but also with promise and possibilities for our patients and their families. It is unclear what implications the new political dispensation in our state and at the national level will have with regards to access to health care for children. Nevertheless, opportunities exist to work together with our elected officials to advance the care of children and to maintain the access to health care available to the most vulnerable in our society through programs such as Medicaid, the Children’s Health Insurance Program (CHIP) and at least for now, the protections provided to children and families by the Affordable Care Act.
By Mike Severson, MD, FAAP
Registering for this year’s Pediatricians’ Day at the Capitol, set for March 21, generated a reflection on my 20 plus years of advocacy.
I have always enjoyed Peds’ Day but recall early on the anxiety that visiting with my legislator brought. Visiting an environment daunting in scope and history, coupled with a frenetic urgency by seemingly experienced participants can leave one feeling a bit inadequate. Then, of course, facing the reality of scheduled meetings with legislators and whether I’d be up to the task generated uneasiness in those early days.
What I came to realize is that addressing the challenge of these encounters is pretty easy for pediatricians. If you think about it, these brief visits are a lot like the office visits we perform multiple times each day. We have a very brief amount of time to develop a sense of trust and rapport to deliver specific information about topics we know well. Remember, the legislator has been elected to represent you and hear your opinion.
By Sheldon Berkowitz, MD, FAAP, MNAAP Board of Directors; Maggie Dreon, MS, CGC, Amy Gaviglio, MS, CGC, Sondra Rosendahl, MS, CGC, Minnesota Department of Health Newborn Screening Program
Minnesota has a long history of being a leader in newborn screening, often being one of the first states to tackle a new initiative or add a new disorder. Over the past year, Minnesota’s Newborn Screening program has been working to bring three disorders to Minnesota’s panel: mucopolysaccharidosis type I (MPS I), Pompe disease, and X-linked adrenoleukodystophy (X-ALD).
Adding a new condition always brings with it new challenges, and these three disorders present several novel issues not previously encountered in newborn screening. Because these conditions have variable severity, age of onset, and treatment efficacy, the role of the primary care provider (PCP) in follow-up of positive screens will be increasingly vital and ongoing.
Take X-ALD, for example. There are three types of X-ALD and screening cannot clearly distinguish among them: childhood cerebral, adrenomyeloneuropathy, and Addison’s disease only. Furthermore, diagnostic testing is often unable to determine type until symptoms present. In X-ALD, treatment isn’t usually initiated until the onset of symptoms, which can take years to develop. Even individuals with the childhood cerebral type (the most severe and earliest onset type), may not show symptoms prior to four years of age. This means that PCPs will need to work with specialists to monitor their patients for symptom onset for longer than they have had to do for newborn screening conditions in the past. This later age of onset puts families—and PCPs—in a “sit and wait” situation. The risk is that families will become complacent with waiting, will stop following up, and then miss the key features of the disorder that show onset has occurred. Once onset occurs, the impact of the disease is irreversible, making the goal of catching symptoms early essential and the relationship between the family and PCP critical.
By Heidi Moline, MD, MPH, pediatric resident, University of Minnesota
Microcephaly. Elevated lead levels. Acute respiratory distress. The past few years have reminded us that pediatricians are at the front line of public health emergencies in our communities and across the globe.
We find ourselves entrenched in outbreaks during their infancy, without case definitions, laboratory guidelines, or media coverage — only patients with curious symptoms.
In early 2015, Brazil experienced a recognized surge of both Zika virus and Dengue virus cases across the country. Several months later, pediatric neurologists Drs. Vanessa van der Linden Mota and Ana van der Linden noted an increase in the number of infants with microcephaly in their Northeastern Brazil clinics.
While in a normal month the might see one microcephalic infant, they were now seeing up to 5-7 per day. The Ministry of Health was notified, and by October, their province which usually has 10 cases of microcephaly per year, had registered 141 cases. Previously known only to cause rash and mild illness, with the aid of observant pediatricians, Zika virus was soon linked to microcephaly and other congenital malformations.