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MNAAP Newsletter

Minnesota Pediatrician is published quarterly and is written by pediatricians for pediatricians. The newsletter is mailed and emailed to over 1,000 members.

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September 23, 2019

Sheldon Berkowitz, MD, FAAP

MNAAP President-Elect Sheldon Berkowitz, MD, FAAP, attended the May 2019 signing ceremony of the bill which formed the Rare Disease Advisory Council. His attendance was at the request of the family who advocated for its creation, and he shares these thoughts with Minnesota Pediatrician.

“I’m not sure if you remember me, but I am Chloe Barnes’ mother.” This was the beginning of an email I received in March 2019. To be honest, I vaguely remembered the name but once I looked up her medical record, it all came back. This family came to see me for a second opinion nine years earlier with concerns about their daughter’s lack of walking ability and muscle strength. I examined her and agreed with her parents that yes, her gross development was delayed and she had some hyptonia. I thought further testing was indicated. We talked about whether the parents wanted to have this done with their primary care physician (to whom I would send a copy of my notes) or have me start it, and they requested I order the tests. A neurology referral, brain MRI and subsequent workup showed that she had a severe neurologic disorder. She eventually underwent a bone marrow transplant, but succumbed to her disease a few months later. Other than the initial clinic visit and a preoperative exam for her MRI, along with a few other phone calls along the way, my involvement in her care was very limited.

Fast forward nine years to the email I received from her mom that ended with, “Thank you for your dedication to these little ones.” There were other emails we traded over the next two months, including one where this mom wrote me that “your clinical judgment gave Chloe a chance” and others where we discussed the bill she had been working on to get additional resources and funding for a Rare Disease Advisory Council from the Minnesota Legislature. We talked about how the Minnesota Chapter of the American Academy of Pediatrics had already signed a letter of support for the bill. Finally, I received an email inviting me to join the family and others for the signing of this bill by the governor. Next thing I knew, I found myself in the Minnesota Capitol Rotunda greeting Chloe’s mom with a big hug.

What I heard from her that day, as well as from Chloe’s father when I reintroduced myself to him at the actual

signing, was how significant my involvement had been for this family. They talked about how important my listening to their concerns and taking them seriously and then acting on them had been.

In addition, they talked about how even though their child eventually died from her disease, my assistance in getting a diagnosis made and treatment provided, gave them extra time with her and allowed them to feel that they did everything they could for her.

I write this not to pat myself on the back as I really don’t think I did anything that remarkable. But to this family I did, and that is a very humbling feeling. As pediatricians, we are allowed into family’s lives and learn intimate details about both their children and often the parents. We are expected to guard that information carefully and to act on it for the best interests of the child we are caring for. Sometimes, that relationship develops over years or decades, while other times it may be a single or a few visits and phone calls. We can never know what impact our involvement in a child or young patient or their family’s life will be. But we should always be aware that it may end up being an incredible experience for everyone involved and make sure we do everything we can to make that happen.

About the Author

Sheldon Berkowitz, MD, FAAP, is the president-elect of the MNAAP. Dr. Berkowitz is a pediatrician in the General Pediatrics Clinic in Minneapolis and also the Medical Director for Case Management, Utilization Management and Clinical Documentation Improvement for Children’s Minnesota.

September 18, 2019

The American Academy of Pediatrics has called upon pediatricians to take an active role in screening for food insecurity in clinical settings and connecting families to food resources. Implementation of screening for food insecurity has accelerated rapidly over the past few years, but many questions remain, including where and how to screen, and what to do once a family screens positive. Jonathan KenKnight, MD, FAAP, and Gretchen Gretchen J. Cutler, PhD, MPH, share screening practices from two different settings.

In the clinic | Dr. Jonathan KenKnight

As pediatricians, we are all acutely aware of the stress and burden food insecurity places on our patients and families, and we need to be screening for problems.  Bright Futures recommends routine screening for food scarcity along with other socioeconomic factors at our well visits. The Minnesota Department of Health also added this to its Child and Teen Checkup requirements in 2017.

At Essentia Health, where I practice in Duluth, we have developed an automated screening questionnaire that is given to families prior to well visits. These are completed in privacy after the patient is roomed.  Depending on responses, these are flagged for follow- up with our community health worker, who then reaches out to families to assist in finding resources.

Fortunately in Duluth, we have several food banks locally and many organizations built to help families address this increasingly common problem. However, given that we take care of a large area ranging from Northeastern Minnesota, Northern Wisconsin, and the upper peninsula of Michigan, sometimes finding local resources is challenging. Fortunately, we have a social worker present in our office space. She is available to speak with families and connect them with resources in person during the visit and can follow up as needed to ensure our children and families have access to food and any other social needs – housing, safety, etc. We also have pamphlets present in our exam rooms with lists of local resources that are freely available to take.

Jonathan KenKnight, MD, FAAP, is a pediatrician with Essentia Health in Duluth, MN.

In the emergency department | Gretchen Cutler, PhD, MPH

I’ve had the unique opportunity to co-lead a research project with Caitlin Caspi, ScD, from the University of Minnesota Department of Family Medicine and Community Health that has tried to tackle questions regarding food insecurity screening with a research team including investigators from Children’s Minnesota (Anupam Kharbanda, MD, MSc), the University of Minnesota (Marissa Hendrickson, MD), and HCMC (Diana Cutts, MD). This study was supported by a research grant from the University of Minnesota’s Clinical and Translational Science Institute, Child Health Collaborative Grant Program, a partnership between the University of Minnesota and Children’s Minnesota.

In February 2017, Children’s Minnesota started screening for food insecurity in our Minneapolis and St. Paul emergency departments (EDs) with the aim of examining a universal electronic medical record (EMR) based screening process along with a text message system for providing follow-up community food resource information.

The validated 2-item Hunger Vital Sign was embedded in the EMR along with other rooming assessment questions. After an 8-month period of verbal screening by nursing staff, only 4 percent of caregivers were screening positive, which was surprising as other studies have found food insecurity rates as high as 40 percent in urban pediatric EDs. Screening was also only being completed in a little over half of patient visits, and nursing staff was raising concerns about difficulties with asking questions directly as written and patient discomfort. We had chosen an EMR-based screening method in order to screen as many families as possible, but this method was not reaching all patients, and was not accurately identifying all families experiencing food insecurity. With a few months of study funding left, we decided to test whether the number of positive screens would go up if we switched to a private, electronic tablet-based method. Over a five-month period this new process resulted in a four-fold increase in the percentage of positive screens, increasing from 4 percent to 16 percent.

During the two-year study, we identified 2,272 families as food insecure and provided each with a food resource handout. A subset of 265 caregivers completed a more comprehensive screen, which showed that over half of these families were classified in the most severe category of food insecurity. These caregivers were also randomized to receive a food resource handout or a handout plus a series of text messages with community food resource information.

Food insecurity status was slightly improved in families at a three-month follow-up, but this did not differ by delivery method of food resource information.

The increase in screening for food insecurity in health care settings is a crucial step towards treating all factors that influence a child’s health, and our finding highlight the importance of choosing the correct screening method. Food insecurity is a stigmatizing condition, which can make verbal disclosure difficult, especially when children are present or in an ED setting when there is rarely an established relationship with a family. To accurately identify all families in need screening methods should be consistently monitored, adjusted when needed, and should incorporate feedback from impacted families.

Gretchen J. Cutler, PhD, MPH is a Scientific Investigator with the Children’s Minnesota Research Institute and an Affiliate Assistant Professor with the Division of Epidemiology, University of Minnesota.

Angela Kade Goepferd, MD, FAAP

While nearly 3 percent of Minnesota high school students identify as gender diverse, many of them do not know where to turn when it comes to finding culturally sensitive, gender-affirming care. And despite recent advances in health care, transgender and gender-diverse youth continue to face significant health disparities, including higher rates of harassment, discrimination, homelessness, and suicidality.

As part of Children’s Minnesota’s commitment to provide equitable and inclusive care to all children, we launched the Gender Health Program in April. This personalized and comprehensive pediatric multispecialty clinic provides transgender and gender-diverse children and their families with medical care and support from pediatric experts they can trust, including experts in pediatric gender health, endocrinology, and gynecology.

About the program

Each family that comes to the Gender Health Program will start with a gender consultation with one of our physicians. During this initial consultation, children and their families meet with a gender health expert to discuss developmental questions or concerns about gender identity and develop a personal care plan. Each family comes to the program at a different place and with a different path, so this consultation helps to answer questions, discuss goals, and think about next steps. Often youth—especially teenagers—and their families come to this initial consultation with different questions and goals. Our team is committed to helping understand what each child, parent, and family needs before moving forward. We can often help youth and families understand each other and learn to speak a common language as they navigate future steps on their journey.

One key component for most families is appropriate mental health assessment and referrals as needed. Our program includes a social worker/care navigator who participates in the initial intake assessment for each family to help determine what resources are needed. We can connect parents with resources and support for their questions, and can connect youth with individualized support systems. Our goal is to optimize care and outcomes for each patient, by supporting the mental and physical well-being of the whole child and the whole family.

The onset of puberty can be difficult for many transgender and gender-diverse adolescents, and Children’s offers both pubertal and menstrual suppression. These reversible interventions pause puberty and/or menstruation for patients as necessary. Patients may also meet with a pediatric gynecologist for a consultation to discuss options to preserve fertility prior to beginning pubertal suppression and/or gender-affirming treatment.

For patients who are in middle-to-late adolescence, gender-affirming hormone treatment may be appropriate. This hormone treatment creates changes in the body to align with the patient’s gender identity. The decision to move forward with such treatment is made with one of our gender health experts, along with a readiness assessment by a mental health professional to optimize outcomes—and to gauge the support and obtain the consent of parents.

Gender-affirming surgeries are most often performed for patients who are over the age of 18 and are not done at Children’s Minnesota. While Children’s Gender Health Program does not perform these surgeries, we can refer patients to plastic surgeons in the community as needed.

Tips for primary care physicians

While transgender and gender-diverse children and adolescents may come to the Children’s Gender Health Program for specialized and expert care related to their gender identities, they will continue to receive their primary care (including well-child exams, immunizations, and ill-child visits) through their primary care offices. Primary care clinicians often have questions about how to best provide supportive and affirming care to transgender patients and their families.

Ask each child the name they would like to be called, and the pronoun they use, and be sure to use this name and pronoun at each visit.                       

Educate staff about how to ask each patient what name they would like to be called and what pronoun they use, so that they can do the same; this is especially important for those answering phones, checking in, and rooming patients. It’s also important to remember that we all make mistakes, even when we are trying to do our best. When mistakes happen, we should acknowledge them, apologize, and commit to continuing to get it right in the future.

Often, mistakes in calling a patient the correct name or using the correct pronoun are made due to limitations and barriers of the electronic medical record (EMR). Primary care providers should find out the best way to optimize their EMR system to visibly display the preferred or declared name of each child, as well as the pronoun they use. Being misgendered when seeking medical care is a common fear of transgender and gender-diverse patients and their parents, and anything we can do to ensure a smooth and affirming patient care experience will allow children and families to relax and focus on the medical reason for their visit.

Parents often struggle to know how to best support their kids on top of dealing with their own feelings of grief, anger, disappointment, or fear. Primary care clinicians can affirm to parents that asking questions is OK, and seeking supportive resources is encouraged. Parents often need just as much, if not more, room to ask questions and seek support as they learn more about their child’s identity. Parental rejection is a significant risk factor for poor physical and mental health outcomes for transgender youth, including a significantly increased risk of suicide, so clinicians should always encourage parents to consistently reassure their children that they love them, even when they are struggling to understand their expressed identities. Unconditional parental love is the single biggest protective factor to keep transgender and gender-diverse kids healthy and safe.

Although positive steps have been taken in recent years, transgender and gender-diverse youth are still a medically underserved population, experiencing a variety of health disparities. The Children’s Gender Health Program offers transgender and gender-diverse children and their families a place to go for exclusively pediatric, comprehensive, compassionate medical care when they have questions about their gender. With this program, Children’s continues to strive to be every family’s essential partner, and to ensure that transgender and gender-diverse children can grow up happy, healthy, safe, and strong.


About the Author

Angela Kade Goepferd, MD, FAAP, is the medical director of Children’s Minnesota’s Gender Health Program, the director of Medical Education and vice chief of staff for Children’s Minnesota, and a general pediatrician in the Children’s Minneapolis Primary Care clinic. An advocate for advancing equitable health care for all children, Dr. Goepferd works to ensure a positive human experience for patients, families, and professional staff, and has been an engaged member and leader on several committees, strategic planning teams, and other initiatives across the organization.

Lori DeFrance, MD, FAAP

I am grateful to have a cabin on Ojibway Lake just outside of Ely, Minnesota. It is a very quiet lake with a Boundary Waters-like landscape where I can truly relax and recharge. I hope that all of you have had the opportunity to do the same over the summer.

At the 2019 American Academy of Pediatrics (AAP) Annual Leadership Forum, elimination of non-medical exemptions to vaccination was voted as the number one priority. AAP President Dr. Kyle Yasuda has stated, “Given the measles outbreaks, prioritizing the elimination of non-medical exemptions is a timely undertaking.”

The leaders of our chapter, along with our lobbyist, Eric Dick, and Immunization Work Group Chair Dr. Dawn Martin, kept the wheels turning this summer as we pursued a timeline for eliminating non-medical exemptions for vaccines in the state of Minnesota. This was identified as a chapter priority last year and will likely be a marathon undertaking. We have good news in that we have identified Minnesota legislators who are willing to co-author a bill. This will require no small measure of diligence and courage on their behalf as we move forward.  A highlight in our advocacy path was a telephone conference in July with Senator Richard Pan, who is a pediatrician and state senator in California.  Three years ago, he co-authored a bill that prohibited “any public or private elementary or secondary school, childcare center, day nursery, nursery school, family day care home or development center” from admitting children who have not been fully immunized against several diseases. His words to us during the phone call were a treasure trove of information on how to proceed.

Here are some pearls from the conversation with Senator Pan:

1) Science is important, but it isn’t always effective in winning the hearts or votes of legislators. The face of the bill should be families and children in our communities who are vulnerable to vaccine-preventable infectious diseases and who are fierce advocates of vaccinations.

2) He used the phrase “community immunity” rather than herd immunity. We like this catchy version!

3) Public health comes first and foremost. When anti-vaxxers start to talk about personal freedom, remember that state and federal law rightly allows the government to protect the health of the community.

4) Building a coalition of like-minded organizations, including those in health care, schools and business will be important in strengthening this mission.

The headlines regarding the measles outbreak of 2019 are winding down as I write this letter.  But one thing we know for sure is that another measles outbreak in Minnesota is only a matter of time. Other vaccine-preventable diseases are always on our radar, too. We must remain steadfast in protecting children from infectious diseases that may result in harm and death. I invite you to be a part of this chapter initiative. Please contact me or any of our board of directors members if you have families that would like to step forward and participate. Consider signing up for the MNAAP Immunization Work Group. Email your legislators to support this bill when it is introduced. Be available for testimony to the legislature. Become a MNAAP board of directors member!

All of your efforts have an indelible impact on the families and children that we serve.

Thank you,

Lori DeFrance, MD, FAAP

MNAAP President

Eric Dick, MNAAP Lobbyist

While the summer and fall of a non-election year are generally a quiet time for state legislators and advocates alike, it’s a perfect time to make or reinforce relationships with your legislators. Though the start of the 2020 Minnesota legislative session is many months away, the work of being an advocate for healthier kids, adolescents, and families does not take a vacation.

State legislators are back in their districts for the autumn and will be into the winter. Many legislators are hosting town hall meetings with constituents and knocking on doors to build support in anticipation of close races once the November 2020 election arrives. These are terrific opportunities to remind legislators to invest in child and adolescent health and safety.

The fall is also a terrific time to invite your legislator to your clinic or a neighborhood coffee shop to urge them to support the issues that matter to pediatricians and their young patients. I am always eager to assist with scheduling a visit or to offer background, talking points, or tips on being an effective advocate.

MNAAP leadership has been busy this summer advocating for stronger immunization laws. While the most recent and dangerous national measles outbreak lingered, MNAAP leaders have been meeting with key legislators and advocating within their clinics and health systems to support fixing Minnesota’s weak immunization requirement. MNAAP staff has been similarly busy meeting with potential allies, health care professional associations, patient advocates, and other immunization advocacy leaders. We face an uphill climb to fix the law, but the chapter has received an encouraging level of support.

Several MNAAP leaders held a conference call with California State Senator Richard Pan, a pediatrician and the author of legislation to repeal California’s personal belief exception (PBE). Dr. Pan shared with the group his experience, encouraging the MNAAP to build a broad coalition of advocates and allies. Read Dr. Lori DeFrance’s “Word from the President” (page 3) for specific takeaways from our conversation.              

To make a healthier Minnesota, we must start now. As autumn arrives and winter looms, take the time to make or build a connection with your legislator.  It’s as simple as an email, a phone call, or a cup of coffee and it matters.   

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