Is Type 1 Diabetes Being Ignored?

Some people believe the type 2 diabetes epidemic is taking attention away from type 1 and needed research. Find out what's behind the controversy.

By Kristen Stewart

Medically reviewed by Pat F. Bass III, MD, MPH

What do you know about diabetes? If you've read an online news source or watched the nightly report lately, you probably know that this health condition is on the rise. Diabetes currently affects almost 26 million people in the United States, or over 8 percent of the population. However, many may not realize that there are two kinds of diabetes — type 1 diabetes and type 2 diabetes — and that there are significant differences between them. For this reason, some people active in the field of diabetes are calling for a name change for type 1 diabetes.

As similar as the two types sound in name, only about 7 percent of diabetics have type 1. Type 1 diabetes occurs in all ages, but it primarily develops in children and young adults. Those with type 1 diabetes do not produce any insulin, a hormone which is necessary to change food into energy.

Riva Greenberg, author of 50 Diabetes Myths That Can Ruin Your Life and the 50 Diabetes Truths That Can Save It, knows all about type 1 diabetes distinctions. She has been living with type 1 diabetes for 39 years.

Living With Type 1 Diabetes

Greenberg's experience has led her to believe that unless you or a family member lives with type 1 diabetes, it's hard to understand the intense management type 1 diabetes requires. "There's a tape constantly running in your head calculating what you're eating, when you'll exercise, how much insulin you need, and where your blood sugar is at any given moment to stay within a defined target zone to avoid diabetes complications," she says.

Like most people with type 1 diabetes, Greenberg pricks her fingers several times a day to test her blood's glucose level and gives herself multiple insulin injections a day, all to replicate what a normal body does automatically — maintain a relatively normal blood sugar level. And this delicate dance is repeated day after day and year after year to attempt to maintain just the right balance. Too many high blood sugar readings can cause long-term damage, including a shortened lifespan, while low blood sugars can result in immediate danger from hypoglycemia, which leads to confusion, disorientation, and in the worst case, death.

Type 1 diabetes exacts a psychological toll as well. "Living with type 1 diabetes causes emotional stress, a mental exhaustion, and sometimes anguish from doing this every day," says Greenberg. "There's also a certain amount of anxiety about the future and feeling nearly invisible to the public. Some days there is a very human desire to say, ‘Please see me and what I live with and how hard I work at this.'"

Facts About Type 2 Diabetes

Type 2 diabetes is much more common, but also requires less intense management. Unlike type 1 in which the body does not produce any insulin, those with type 2 either produce less insulin than normal or have insulin resistance — their body does not properly utilize insulin.

Type 2 diabetes is often found in people who are overweight, especially around the middle, though not always. Poor eating habits and little or no physical activity are other risk factors along with genetics, ethnicity, and having had gestational diabetes or a larger than normal size baby.

Whereas treatment for type 1 diabetes requires frequent blood monitoring and insulin injections or wearing an insulin pump, most people with type 2 do not need to test their blood sugar levels as frequently and are not nearly as vulnerable to hypoglycemia. Exercise, a healthier diet, moderate blood testing, and sometimes medication make up the usual course of prescribed action. Further, some people with type 2 diabetes are able to cut down on or stop taking medication if they lose weight. This is never the case with type 1 diabetes patients, who must take insulin for the rest of their lives.

What's in a Name?

Clearly, there is a significant difference between type 1 and type 2 diabetes. The question is, should their names be less similar as well?

Those in favor of a name change believe type 1 diabetes may now be overlooked with so much attention on the much more common type 2. By altering the name, proponents hope to change several things.

"Of course no one can predict," says Greenberg, "but the intended benefit of changing the name of type 1 diabetes is greater awareness of the condition for the purpose of gaining more funding to research a cure, gaining respect for what [people with type 1] live with and do on a daily basis to live as full a life as possible, and prompting the health care system to begin looking at ways to provide greater support and education for living with this life-long demanding condition."

The discovery of insulin almost 90 years ago was the last significant medical advance made in managing type 1 diabetes. So it's no wonder many want more research funding and advances for the disease. At the same time, however, there may still be benefits of keeping the name.

"Some say type 1 benefits from being under the media spotlight and umbrella of type 2 diabetes, and they may be right," says Greenberg. "Frankly, I don't know. If we did change the name there would need to be an educational campaign to explain to the public the difference and why type 1 diabetes needs its own urgent stream of funding for a cure."

But there's one thing everyone can agree on: the need for further medical advancement in diabetes research.