Diabetes in Real Life

Public, professional education needed about type 1 diabetes symptoms

In this issue, Susan Weiner, MS, RDN, CDE, CDN, talks with Tom Karlya, father of two children with type 1 diabetes, syndicated columnist Diabetes Dad and one of the leading voices against the missed diagnosis of type 1 diabetes.

What is Reegan’s Rule?

Karlya: The short answer is that Reegan’s Rule is a law that was passed in North Carolina encouraging medical professionals to supply parents with diabetes education at each yearly visit of a child up to the age of 5 years. The more accurate answer is that Reegan’s Rule is a law passed in response to a grassroots effort to get children diagnosed before they experienced complications of type 1 diabetes.

Susan Weiner

The campaign was a response to several cases in which extremely ill children with undiagnosed type 1 diabetes saw a medical professional once, twice and even three times, and they were sent home with mistaken diagnoses of stomach flu or virus-like symptoms. In reality, the patients were past the diagnosis of type 1 diabetes; they were in full-blown diabetic ketoacidosis (DKA), an acute metabolic complication of diabetes characterized by hyperglycemia, hyperketonemia and metabolic acidosis. DKA occurs mostly in type 1 diabetes. It causes nausea, vomiting and abdominal pain, and it can progress to cerebral edema, coma and death.

As more and more children were harmed by misdiagnoses, several groups began initiatives to gather some scientific proof that this was occurring and, ultimately, to effect policy change. What started as smaller than a completely grassroots effort has now turned into a full-court press by many to get the word out, not only to medical professionals, but also to parents.

When I started at this fight years ago, I felt so alone. So many policymakers and health care professionals told me that nothing would ever change the paradigm for pediatric diabetes testing. But after Reegan died at 16-months old, the initiative picked up speed quickly. Reegan’s mother was on a mission, and I was glad to be part of the passing of that law. I never expected us to be where we are now, and we have so much further to go.

Why do you think there is a rise in the missed diagnosis of type 1 diabetes?

Karlya: This question seems almost ridiculous to ask, but it addresses a reality. One study showed that from 1998 to 2012, the incidence of DKA at the time type 1 diabetes was diagnosed in children in Colorado increased by 55% (Rewers A, et al. JAMA. 2015;doi:10.1001/jama.2015.1414). So, there is solid proof that the problem exists; the reason is much harder to pinpoint. Is the world a different place, adding more stress to individuals than ever before, or is it that accessibility to insurance coverage has lessened to the point that people believe they cannot afford to “go with their gut” that something is indeed wrong with their child so that they wait to seek help, sometimes too long? I’m not versed enough in public health policy to understand why it is happening, but I have yet to discuss this with any medical professional who has not stated that undiagnosed diabetes is absolutely on the rise.

Tom Karlya

I also believe there is a void in education about diagnosing the disease. Why is it that if someone comes in with a sore and scratchy throat it is an immediate response to test for strep throat? It is a problem when a child who is vomiting or having severe nausea pains is not given a simple urine test or finger prick to determine whether more testing needs to be done to check for type 1 diabetes. No one has given me a reasonable explanation as to why this is not, or should not become, standard operating procedure. I do not mean to sound overly dramatic, but people have died while in DKA, and a simple test could have saved them. Does it take a child of someone well-known to bring this out of the darkness? It is all so completely avoidable. I get angry.

Why do you think people are becoming more aware?

Karlya: Two words: social media. There has been so much written lately regarding the cost of EpiPens and how much the price has risen. It is in the mainstream press, so it has entered the consciousness of the mainstream public. Yet, people have been exclaiming about the rise in the cost of insulin for years. Why is no one hearing? Because the rising cost of insulin has not crossed over into mainstream media. The power of social media to keep a topic alive until action results is tremendous.

I cannot tell you how lonely it was when people thought I had two heads when I would scream about a missed diabetes diagnosis and another child dying. As social media grew, so did this initiative to raise awareness. Should someone die from a missed diagnosis and the story hits a newspaper anywhere, in a very short time social media will have it out there for all to see. Each time, someone else who can make a difference stands up and takes notice. A person, a small group, an elected official, an organization — the movement to change procedures is indeed growing. Social media is keeping it going until it can cross into the mainstream media.

What initiatives are currently available to help the medical community and the community at large recognize the symptoms of diabetes?

Karlya: Our advocates have become more focused as we have become more knowledgeable. I think the focus now is on medical professionals — the pediatrician’s office, the family physician’s office, EDs — the schools and the general public. Out-of-the-box thinking will make a difference. I stated earlier that we needed concrete proof that underdiagnosis is a problem, proof grounded in recognized methods. MyGlu.org and T1D Exchange have recently finished a comprehensive survey with institutional review board approval. We will have proof, and these organizations will be shaping the next steps to take. These groundbreaking data can help formulate initiatives for the years to come.

The National Association of School Nurses has notified its membership about how crucial their role is as community leaders in recognizing this problem. Already we know that a nurse’s intervention when a child presents with stomach flu or virus-like symptoms has identified type 1 diagnosis before DKA occurs — and that is the goal. The organization Beyond Type 1 has begun an important campaign to educate the public about the signs of diabetes and what to do about them, to ask for a simple urine test or finger prick. They are also working with medical professionals to help in this initiative. We need industry partners to step forward with capital and outreach. It’s my hope that companies will come to the table, as Insulet has, and ask, “How can we help?” Insulet recently sponsored a think-tank gathering to vet new ideas.

Anyone in the diabetes world can help by giving a few dollars or resources to this initiative. Many individuals are helping raise awareness, but we cannot stop until there is a comprehensive plan in place to change this paradigm. Because if another child dies from something so avoidable, then shame on all of us.

Disclosure: Karlya and Weiner report no relevant financial disclosures.

In this issue, Susan Weiner, MS, RDN, CDE, CDN, talks with Tom Karlya, father of two children with type 1 diabetes, syndicated columnist Diabetes Dad and one of the leading voices against the missed diagnosis of type 1 diabetes.

What is Reegan’s Rule?

Karlya: The short answer is that Reegan’s Rule is a law that was passed in North Carolina encouraging medical professionals to supply parents with diabetes education at each yearly visit of a child up to the age of 5 years. The more accurate answer is that Reegan’s Rule is a law passed in response to a grassroots effort to get children diagnosed before they experienced complications of type 1 diabetes.

Susan Weiner

The campaign was a response to several cases in which extremely ill children with undiagnosed type 1 diabetes saw a medical professional once, twice and even three times, and they were sent home with mistaken diagnoses of stomach flu or virus-like symptoms. In reality, the patients were past the diagnosis of type 1 diabetes; they were in full-blown diabetic ketoacidosis (DKA), an acute metabolic complication of diabetes characterized by hyperglycemia, hyperketonemia and metabolic acidosis. DKA occurs mostly in type 1 diabetes. It causes nausea, vomiting and abdominal pain, and it can progress to cerebral edema, coma and death.

As more and more children were harmed by misdiagnoses, several groups began initiatives to gather some scientific proof that this was occurring and, ultimately, to effect policy change. What started as smaller than a completely grassroots effort has now turned into a full-court press by many to get the word out, not only to medical professionals, but also to parents.

When I started at this fight years ago, I felt so alone. So many policymakers and health care professionals told me that nothing would ever change the paradigm for pediatric diabetes testing. But after Reegan died at 16-months old, the initiative picked up speed quickly. Reegan’s mother was on a mission, and I was glad to be part of the passing of that law. I never expected us to be where we are now, and we have so much further to go.

Why do you think there is a rise in the missed diagnosis of type 1 diabetes?

Karlya: This question seems almost ridiculous to ask, but it addresses a reality. One study showed that from 1998 to 2012, the incidence of DKA at the time type 1 diabetes was diagnosed in children in Colorado increased by 55% (Rewers A, et al. JAMA. 2015;doi:10.1001/jama.2015.1414). So, there is solid proof that the problem exists; the reason is much harder to pinpoint. Is the world a different place, adding more stress to individuals than ever before, or is it that accessibility to insurance coverage has lessened to the point that people believe they cannot afford to “go with their gut” that something is indeed wrong with their child so that they wait to seek help, sometimes too long? I’m not versed enough in public health policy to understand why it is happening, but I have yet to discuss this with any medical professional who has not stated that undiagnosed diabetes is absolutely on the rise.

Tom Karlya

I also believe there is a void in education about diagnosing the disease. Why is it that if someone comes in with a sore and scratchy throat it is an immediate response to test for strep throat? It is a problem when a child who is vomiting or having severe nausea pains is not given a simple urine test or finger prick to determine whether more testing needs to be done to check for type 1 diabetes. No one has given me a reasonable explanation as to why this is not, or should not become, standard operating procedure. I do not mean to sound overly dramatic, but people have died while in DKA, and a simple test could have saved them. Does it take a child of someone well-known to bring this out of the darkness? It is all so completely avoidable. I get angry.

Why do you think people are becoming more aware?

Karlya: Two words: social media. There has been so much written lately regarding the cost of EpiPens and how much the price has risen. It is in the mainstream press, so it has entered the consciousness of the mainstream public. Yet, people have been exclaiming about the rise in the cost of insulin for years. Why is no one hearing? Because the rising cost of insulin has not crossed over into mainstream media. The power of social media to keep a topic alive until action results is tremendous.

I cannot tell you how lonely it was when people thought I had two heads when I would scream about a missed diabetes diagnosis and another child dying. As social media grew, so did this initiative to raise awareness. Should someone die from a missed diagnosis and the story hits a newspaper anywhere, in a very short time social media will have it out there for all to see. Each time, someone else who can make a difference stands up and takes notice. A person, a small group, an elected official, an organization — the movement to change procedures is indeed growing. Social media is keeping it going until it can cross into the mainstream media.

What initiatives are currently available to help the medical community and the community at large recognize the symptoms of diabetes?

Karlya: Our advocates have become more focused as we have become more knowledgeable. I think the focus now is on medical professionals — the pediatrician’s office, the family physician’s office, EDs — the schools and the general public. Out-of-the-box thinking will make a difference. I stated earlier that we needed concrete proof that underdiagnosis is a problem, proof grounded in recognized methods. MyGlu.org and T1D Exchange have recently finished a comprehensive survey with institutional review board approval. We will have proof, and these organizations will be shaping the next steps to take. These groundbreaking data can help formulate initiatives for the years to come.

The National Association of School Nurses has notified its membership about how crucial their role is as community leaders in recognizing this problem. Already we know that a nurse’s intervention when a child presents with stomach flu or virus-like symptoms has identified type 1 diagnosis before DKA occurs — and that is the goal. The organization Beyond Type 1 has begun an important campaign to educate the public about the signs of diabetes and what to do about them, to ask for a simple urine test or finger prick. They are also working with medical professionals to help in this initiative. We need industry partners to step forward with capital and outreach. It’s my hope that companies will come to the table, as Insulet has, and ask, “How can we help?” Insulet recently sponsored a think-tank gathering to vet new ideas.

Anyone in the diabetes world can help by giving a few dollars or resources to this initiative. Many individuals are helping raise awareness, but we cannot stop until there is a comprehensive plan in place to change this paradigm. Because if another child dies from something so avoidable, then shame on all of us.

Disclosure: Karlya and Weiner report no relevant financial disclosures.