Michelle Berman Talks Life-saving DKA Campaign
Beyond Type 1: Why did you make T1D/DKA awareness your mission?
Berman: When I first learned of children, teens and adults tragically losing their lives due to undiagnosed/missed diagnosed Type 1 diabetes, I was in disbelief. I was devastated to learn this was happening to many families, year after year. Among others, I learned about the deaths of 5-year-old Kycie Terry, a resident of Utah, 16 month-old Reegan Oxendine, a resident of North Carolina, and 9-year-old Jordan Weiss, a resident of Massachusetts, who all died as a result of complications related to undiagnosed Type 1 diabetes. I remember knowing something had to be done before another family loses a loved one.
I was also frightened by the fact that this could have happened to my son. He was my 3rd child, and yet I knew nothing about T1D or any of the warning signs. For over a decade, as a parent, I read every parenting book, baby book, and pediatric pamphlet and never once saw anything about Type 1 diabetes. In retrospect, my son had several of the warning signs. However, I dismissed these glaring symptoms and chalked them up to the plights of childhood. Right before being diagnosed at age 7, my son had increased thirst, new-onset bedwetting and weight loss. I just thought he was very active, drinking too much and not eating enough! The morning my son fainted, I decided to take him to his pediatrician just to check his blood pressure. That decision, I now realize, may have saved his life.
He hadn’t fainted because of his blood pressure. My son was severely dehydrated and entering the beginning stages of diabetic ketoacidosis (DKA), a metabolic complication of T1D. I remember his pediatrician smelling his breath as I wondered what was going on. After smelling his breath, she performed a urine test and a finger stick blood test. Afterward, she took me aside into another room to tell me my son likely had Type 1 diabetes. I had no idea what that meant. None. How could I have absolutely no knowledge of a fairly common illness that has multiple obvious warning signs?
Luckily, my son had not yet reached the later stages of DKA and wasn’t displaying the life-threatening symptoms such as vomiting, headache, severe lethargy, confusion and unconsciousness. But in many families, children go undiagnosed for far too long because of a lack of awareness of these warning signs and these signs are just chalked up to the flu or other childhood illnesses. Luckily, my child was able to get a urine test and finger stick in time. Many children, teens and adults are not getting diagnosed in a safe and timely manner.
It quickly became clear to me that this was an education and awareness issue. Although Type 1 diabetes awareness and research is becoming more mainstream, I hope the CDC starts to differentiate between the different types of diabetes so that we can begin to assess the increasing incidence of T1D and track when diagnosis interventions occur. As a result of the lack of awareness, the early (and late) warning signs are being missed and lives are being needlessly lost. Left untreated, DKA at diagnosis of Type 1 can lead to death. The public needs to be made aware of the signs of DKA and what to do when their child is exhibiting these signs. Physicians must be reminded to consider T1D as a possible diagnosis when early warning signs present AND when late warning signs present or when parents relay symptoms to triage nurses on the phone. I never again want another parent, family member, friend or adult to have to experience the guilt and of having to ask, “Why didn’t I know the warning signs of Type 1 diabetes?”
Beyond Type 1: How did you become involved with the DKA awareness campaign?
Berman: In December, 2015, I learned that Deb Healy (a parent advocate whose son has T1D) was interested in pursuing a legislative approach with her Senator (Senator Patrick Browne) to bring T1D education and awareness to Pennsylvania (similar to Reegan’s Rule legislation in North Carolina), and we joined forces. Deb Healy and I first met with Vicki Wilkins, Legislative Counsel to Senator Browne, who supported our efforts and arranged a follow-up meeting in Harrisburg with Dr. Rachel Levine, PA Physician General, Mr. Neil Malady, Director of Office of Legislative Affairs of Pennsylvania Department of Health, Mr. John Nikoloff, Partner and President, ERG Partners, and Mrs. Suzanne Yunghans, Executive Director, Pennsylvania Chapter of the American Academy of Pediatrics (PAAAP). Also in attendance on our behalf was pediatric nurse practitioner, Terri Lipman, PhD, who was instrumental in creating the first pediatric Type 1 diabetes registry in Pennsylvania, and parent advocate Michelle Fox.
During this meeting, it was determined that we would not be pursuing a legislative approach at that time, but instead we were encouraged by Dr. Rachel Levine, who shared a deep concern and passion for this topic, to pursue a statewide education campaign. Suzanne Yunghans, Executive Director of PAAAP, suggested working together on education efforts to create an online T1D awareness campaign for their membership and PA families. Around the same time, I connected with Sarah Lucas and Thom Scher from Beyond Type 1 who shared similar concerns and goals. Sarah Lucas suggested the possibility of expanding efforts to include a fully-funded statewide campaign, consisting of warning signs posters, patient handouts, audio/video education, and a physician portal for all PAAAP members. By the summer of 2016, a partnership was formed between PAAAP, Beyond Type 1 and parent advocates. In November of 2016 (in conjunction with NDAM) the first official statewide DKA awareness campaign launch took place in Pennsylvania educating parents about the warning signs and reminding physicians to consider a T1D diagnosis. The campaign was a great success, so much so, that we all agreed to expand the campaign nationwide with individual state chapters of the AAP.
Beyond Type 1: How many states have been approved so far?
Berman: Since the first launch in Pennsylvania in November, 2016, over the past 18 months, the campaign has been approved in 22 state chapters of the American Academy of Pediatrics and we are currently in the review phase in several additional states. We are in the introduction phase in remaining states – with a goal to complete AAP campaign launches throughout the remainder of 2018. We are committed to raising awareness of Type 1 diabetes and Diabetic ketoacidosis. To date, materials have been distributed to 28,000 pediatric offices that serve over 90 million patients annually. In 2017, the campaign launched in New Zealand, and over 1100 general practitioners received the print campaign. The NZ Doctor magazine provided a campaign insert for their 2700 subscribers.
Beyond Type 1: What is involved to launch the campaign in each state?
Berman: As national parent advocates, Debbie and I reached out to family advocates interested in becoming family leads in their respective states. We work with the advocates by helping them to follow the Pennsylvania model with the introduction to their local AAP chapter with Beyond Type 1 providing all presentation assets for AAP leadership review and approval at monthly board meetings. Once approved, the state advocates connect with two Type 1 families in their state who are willing to share their diagnosis stories for the patient handout that highlights warning signs. We then seek the endorsement of selected pediatric endocrinologists in each state. Beyond Type 1 fully funds the campaign, prints all materials, and creates a customized physician portal that includes warning signs in multiple languages and a PSA video and audio recording from Victor Garber, BT1 Leadership Council member living with T1D.
It is truly a labor of love for family advocates and a remarkable collaborative effort between state chapters of the AAP and Beyond Type 1. The response from individual chapters of the AAP has been amazing. Meeting with family advocates and executive directors from states across the country, for me, has been so gratifying. To see families and friends affected by Type 1 diabetes coming together to raise life-saving awareness and children with Type 1 helping to prepare the mailing really speaks to the strength and caring spirit of the entire community. The overall involvement from families and friends in this community is the greatest asset to the campaign being launched in each state.
Beyond Type 1: What states have approved the campaign?
Berman: The states that have approved the campaign are as follows:
- New Jersey
- North Carolina
- West Virginia
(*approved with special requests pending)
Beyond Type 1: Does the campaign only target pediatricians?
Berman: While that was our initial goal, since working with Beyond Type 1 and individual AAP chapters, the campaign outreach has expanded in many states to hospital Emergency Rooms, Urgent Care clinics, family medicine practices, school nurses, teachers and med students. For example, in Colorado we partnered with The Barbara Davis Center. Most recently, Michigan Children’s Hospital houses framed warning signs posters in English and Spanish for even more public awareness. In New Jersey, the campaign has recently been added to pediatric office websites and patient portals. In June, 2018, the campaign will have a presence within the Utah Optometry Association. We are constantly receiving and expanding more opportunities for education and awareness thanks to the amazing partnership among the AAP, Beyond Type 1, and family advocates.
Beyond Type 1: How do others get involved?
Berman: There are many ways to get involved. For more information on the campaign, or how to get involved in your state or country, email firstname.lastname@example.org. Visit Beyond Type 1’s DKA Campaign page here. If your state is in process or not yet launched there are several options, from becoming a state family advocate, offering your diagnosis story to be included in the patient handout or volunteering with the mailing process, and more! If your state has already launched, you can reach out via email to be added to the list of volunteers for future T1D/DKA awareness efforts in your state.
Beyond Type 1: Is there anything else you would like to share about the campaign?
Berman: I would like to extend my sincerest gratitude and appreciation to all involved. This is truly a nationwide community effort, and I am so grateful for the initial opportunity to begin education and awareness with Deb Healy, Dr. Terri Lipman, Senator Browne’s team, Dr. Levine, and PAAAP’s executive director, Suzanne Yunghans. Immeasurable appreciation goes to Sarah Lucas, Thom Scher and the entire Beyond Type 1 team for spearheading this campaign. Their vision, goals and dedication to solving the education and awareness problem so that no more lives are lost to new onset Type 1 diabetes in DKA, along with the remarkable support and endorsement from individual chapters of the American Academy of Pediatrics, is something I hope every organization in the medical field will emulate. Nobody should be blamed due to lack of awareness. Everyone can step up and implement the education that is desperately needed to save innocent lives – from the public to medical schools to physicians, physician assistants, nurse practitioners, school nurses, triage nurses, hospitals, urgent care clinics and more. I will never forget the response I received from one of the Massachusetts Pediatric Endocrinologist’s endorsing the campaign, “If we can save just one life, then these efforts are worth it.” Not only can we save one life, we can help eradicate new onset Type 1 diabetes in DKA, and save endless lives by doing so.