I like my endocrinologist, but she's not enough

Every day, patients with type 1 diabetes must check their blood sugar, take insulin, monitor their food intake and exercise to keep their blood sugar levels in a healthy range. Their pancreas has stopped making insulin due to a reaction from the immune system. The result is a chronic condition that must be managed and can be very physically and emotionally taxing. Most people with type 1 diabetes see a specialist called an endocrinologist to help with disease management, but for many, bi-annual doctors visits are not cutting it.

A blood test called the HbA1c (or A1c) is administered at least twice a year to patients with diabetes to measure their average blood sugar control over the previous 3 months. The American Diabetes Association recommends an average A1c of less than 7.0% for patients with diabetes. But, based on the reports from 25,000 individuals with type 1 diabetes online at T1D Exchange, fewer than 1 in 5 patients met this goal at their last appointment.

Many studies have linked lower A1c numbers to a decreased risk of developing complications like eye, heart and kidney disease later in life. A “normal” A1c result for people without diabetes is between 4 and 6%. People with diabetes are encouraged by their doctors to keep their A1c readings as close to this range as possible. Of the patients with type 1 diabetes in the T1D Registry, the average A1c was 8.3%. Somewhere between the recommendations and reality, management of type 1 diabetes is not meeting the marks for most patients.

To put the onus of responsibility solely on the individual is shortsighted. Numerous studies have linked blood sugar control, measured by A1c, to factors like socioeconomic status and ethnicity. This suggests that there are factors at play that go beyond patient behavior. Use of technology has also been shown to improve diabetes control. When given access to these resources, as well as high levels of information and support, people with type 1 diabetes can and do experience better control.

Steve Richert is a rock climber, educator and founder of LivingVertical – a website and community with the mission of changing the perception of diabetes and its limitations through films and climbing projects. As a type 1 diabetic and type 1 diabetes advocate, Richert shares personal insights around his experience with A1c and where he feels care for type 1 diabetes can be improved.

Blood glucose measurement: getting the whole picture.

“The A1c is like a report card. People put a lot of stock in those grades,” said Richert. “We forget how many people are completely in the dark about their day-to-day blood glucose levels.” He’s right – the A1c is like a report card because it summarizes the past three months in one number. It does not give the patient information about their day to day or hour to hour blood glucose levels, which are key to maintaining control. These numbers give someone the ability and information they need to earn a “good grade” or a lower A1c.

Indeed, only 7% of type 1 diabetics currently use a device that gives the wearer blood glucose readings every 5 minutes, called a continuous glucose monitor. Most rely on finger pricks throughout the day to monitor their blood sugar levels. Wearing a CGM has proven to be effective in bringing down A1c levels. Half of all participants in one study saw A1c decreases of at least 1% in the first 3 months of using a CGM.

Access to advances in care – like continuous glucose monitoring technology – is one part of why many people with type 1 diabetes do not meet A1c recommendations. In many cases, there are more and better resources out there than patients are able to afford or insurance willing to cover. Indeed, people who lack adequate insurance coverage are also more likely to report extremely low blood sugars or diabetic ketoacidosis, a serious condition that comes from very high blood sugars.

For Richert, access to technology falls into the category of “hard skills and assets” that patients need to succeed, but might not have. Put plainly, he feels that “people are missing their A1c targets because they have no idea what their blood sugar does between huge time intervals,” like the hours between meals or during sleep. “Not having a continuous glucose monitor,” he argues, “is like having someone take a driver’s test with a burlap sack over his or her head.” 

The importance of empowerment.  

In addition to the physical resources patients might be missing out on, Richert cites a psychological element to why type 1 diabetic patients fall short of A1c recommendations. For him, the second aspect to this issue is a lack of patient empowerment that comes from the medical treatment model. “Many people,” he explains, “won’t change their insulin dose or won’t change their diet because they are not empowered to optimize their own care.”

Because 1 in 14 U.S. doctors faces a lawsuit every year, medical professionals might fear giving patients the liberty to make their own care decisions. But, endocrinologists often don’t have the time or resources to devote more than 30 minutes every 6 months to patients with type 1 diabetes. “A lot of doctors would probably say, ‘I wish I could do better. I wish I could do more,’” to help type 1 diabetic patients, said Richert. When providers cannot devote enough time or attention to ensure the best outcomes and patients aren’t empowered to take control of their chronic illness management, patient care – and average A1c readings – suffer.

No one party is to blame for poorly controlled type 1 diabetes. Patients and doctors interact in a system that does not support chronic disease management. Advocating for doctors to promote education and empowerment is one way to bring A1c levels down and improve patient quality of life.

Where to turn when clinicians aren’t enough.

In the meantime, many are finding support elsewhere. “I really do think that the best solution is to outsource it [beyond clinicians],” Richert suggests. Many online communities, forums, and support groups around type 1 diabetes provide resources and advice from peers. These groups give people information and strength to take control of their diabetes management in a way that a doctor’s appointment might not. On MyGlu.org, a type 1 diabetes online community, “questions of the day” spark conversation around diet, exercise, and care options. Individuals share tips and insight for overcoming the day to day challenges of managing diabetes. Doctors should be realistic about their limitations and willing to connect patients to these resources.

Closing the gap between A1c recommendations and realities will require giving patients the physical resources they need, helping them to become empowered, and referring them to outside peer groups. Together, these strategies will enable patients to take control of their own type 1 diabetes management.