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Type 1 Diabetes Research | Johns Hopkins

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I want to ask you about your research that's calling into question what we've understood for years about type 1 diabetes, which is no longer called childhood diabetes.

MF: Type 1 diabetes has long been called juvenile onset diabetes and was thought to be a disease that develops in childhood. If diabetes develops in adulthood, it becomes type 2 diabetes. However, it is now known that about half of all cases of type 1 diabetes develop just after age 20 or in adulthood after age 30.

A limitation of these early studies is that they were conducted in small clinics or one health system, so it's unclear whether this is just an issue at that particular clinic or if it applies to the broader general population.

Luckily, the CDC has collected new data on type 1 diabetes in the U.S. Some of the questions included in the national data were, “Do you have diabetes? If so, is it type 1 or type 2? And at what age were you diagnosed?”

This information allowed us to determine how age at diagnosis of type 1 diabetes varies across the U.S. population.

Are type 1 and type 2 diabetes different diseases?

ES: These are very different diseases with very different burdens, and although I’ve worked as a type 2 diabetes epidemiologist my whole life, I’m excited to be expanding my research into type 1 diabetes.

There are approximately 1.5 million adults with type 1 diabetes in the United States compared to 21 million adults with type 2 diabetes. Only 5-10 percent of all people with diabetes have type 1 diabetes. Even in the largest epidemiological cohorts, only a small percentage of people have type 1 diabetes. This means that type 1 diabetes does not have the same national data and epidemiological evidence as type 2 diabetes. The focus of our research is to understand and characterize the general epidemiology and population burden of type 1 diabetes.

What makes type 1 diabetes so difficult to diagnose?

MF: Symptoms vary depending on the age at which the disease is diagnosed. In children, symptoms tend to be very severe and are easy to diagnose. In adults, symptoms tend to be mild and are often mistaken for type 2 diabetes.

Some studies suggest that approximately 40% of adult-onset type 1 diabetes cases are initially misdiagnosed as type 2 diabetes. Understanding how often it is diagnosed later in life is important to correctly diagnose and treat patients.

Can you talk about the different treatments?

MF: People with type 1 diabetes require insulin. People with type 2 diabetes may also need insulin, but this is often only needed later in the disease as oral medications become less effective over time.

ES: Due to the prevalence of overweight and obesity in the general population, many people with type 1 diabetes are also overweight or obese. Type 1 diabetes patients have similar symptoms and manifestations as type 2 diabetes, which can lead to problems with misdiagnosis. Insulin resistance can develop as a result of weight gain metabolic syndrome. Some call this double diabetes (I don't like this term), the idea being that people with type 1 diabetes can also have characteristics of type 2 diabetes.

Type 1 diabetes was once thought of as a skinny person's disease, but that's no longer the case.

MF: Another paper also looked at the issue of overweight and obesity in people with type 1 diabetes, finding that about 62% of adults with type 1 diabetes are overweight or obese, roughly comparable to the general U.S. population.

However, an important disclaimer is that weight management in this population [with Type 1 diabetes] Not at all. You can't just decide to go on a diet, start jogging or do some rigorous exercise. That can be very dangerous.

There has been a lot of buzz about the GLP-1 drugs Ozempic and Mounjaro for people with diabetes and those who are overweight to lose weight and reverse diabetes. Where does this drug fit into this population?

ES: These drugs are used to treat type 2 diabetes associated with obesity. Ozempic and Mounjaro are incretin hormones. They promote satiety, suppress appetite, slow gastric emptying, and reduce energy intake. These are very powerful drugs that may be effective in type 1 diabetes, but do not have It is approved for the management of obesity and type 1 diabetes. At this time, there is no data to guide its use in people with type 1 diabetes, but I think we will see it being used more and more in people with type 1 diabetes.

MF: Another component of weight management is diet and exercise, which are considered fundamental for both type 1 and type 2 diabetes. However, there are no good guidelines for how to do this for people with type 1 diabetes, whereas large, rigorous trials have been conducted for people with type 2 diabetes. We are just beginning to understand how to change the lifestyle of people with type 1 diabetes to safely and effectively manage their weight, but I think this is an important area for further research.

ES: Weight management in type 1 diabetes is complicated by insulin use and the risk of hypoglycemia, or low blood sugar, an acute complication of exercise. For people with type 2 diabetes, there is strong evidence of what works: we know that modest weight loss helps prevent the progression and onset of type 2 diabetes and weight gain. For type 1, there is no such evidence.

Are there concerns about misdiagnosis or inappropriate treatment? Could a patient think they have type 2 but actually have type 1?

MF: I think so. Insulin is the biggest concern. In the obesity paper, they looked at what percentage of people said their doctor had encouraged them to exercise more or to lose weight. They found that people with type 1 diabetes were less likely to get the same advice from their doctor. I think health professionals are hesitant to say, “Just maintain an active lifestyle.”

That’s why it’s important to have studies and guidance like this in place to give patients and their healthcare providers peace of mind and help them improve their lifestyle management.

Where will this research go next?

ES: These studies make it clear that the burden of overweight and obesity is high and poorly controlled in people with type 1 diabetes. Going forward, clinical trials, clear clinical guidelines, and patient education will be needed to most effectively address obesity in the setting of type 1 diabetes.

This can be confusing for people with type 1 diabetes. You hear stories of people losing weight on these medications, and then you go to the doctor and they say, “Yeah, but that's not right for you.”

ES: I hope it will be handled with more caution. These drugs are being used by all kinds of people off-label, and I'm sure people with type 1 diabetes are taking these drugs. I think the question is, is there really a safety issue? This needs to be discussed with caution, and there needs to be actual evidence to ensure there are more benefits than harms.

MF: Dr. Selvin's group has published papers estimating that about 15% of people with type 1 diabetes take GLP-1, but there isn't enough data on what might happen to an individual.

Another big topic we hear about in diabetes is insulin and its price. Can you talk about your research on this subject?

MF: A survey asked, “Was there a time during the year when you did not use insulin because you could not afford it?” Approximately 20% of adults under the age of 65 said that there was a time during the year when they could not afford insulin and therefore engaged in what is known as “cost-saving rationing.” [of insulin].

Medicare currently covers less expensive insulin for people over 65, but cost is an issue for many. Can you expand on that?

MF: The fight is not over: Federal and state policies and manufacturer price caps do not necessarily mean that insulin is more affordable for those who need it most.

Recent research has shown that Annals of Internal Medicine We looked at states that implemented or implemented insulin copayment caps to see how that affected insulin use over time compared to states that did not. We found that while people paid less for insulin, insulin use did not change over time. The $35 cap is an improvement, but more needs to be done.

ES: There are still plenty of very expensive insulin preparations out there, and $35 a month is not cheap for someone who will be taking insulin for life.

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