How To Find Good Diabetes Care
Key takeaways:
- People with diabetes face a range of challenges, which include finding a healthcare provider who stays current on the latest therapies and technology.
- Experts recommend asking healthcare providers about continuous glucose monitoring and other diabetes tech for improving diabetes management.
- Resources for finding good care include online guides, certified diabetes educators, and support groups.
When Zachary Jones, a 27-year-old living in Austin, Texas, noticed he was steadily losing a pound or two a month, he called his primary care doctor and made an appointment. Jones is 6 feet 3 inches tall, typically weighs 190 pounds, works out daily, and watches what he eats. But the weight loss continued. After losing 30 pounds, he began to feel very sick.
When Jones met with his doctor, his fasting blood sugar was 289 mg/dL and his A1C was 11% (the CDC recommends an A1C level of 7% or less). The doctor diagnosed him with diabetes, but wasn't sure if he had type 1 or type 2, Jones recalled. He received a prescription for metformin and Ozempic, both medications used to treat type 2 diabetes.
Like many people with diabetes, Jones faced barriers to finding good health care. It would be several months before he could get an appointment with a specialist and receive a diagnosis of type 1 diabetes.
Luckily for Jones, Anastasia Albanese-O’Neill, director of community screening and clinical trials education for Breakthrough T1D (formerly JDRF), was a family friend. When Jones told her what he experienced, she told him he had type 1 diabetes and urged him to go back to his primary care provider and demand a prescription for insulin.
On his return visit, Jones was given only long-acting insulin and a blood glucose meter. When he first checked his blood sugar at home, it was well over 400 mg/dL. He reached back out to Albanese-O’Neil, who helped him get a referral to an endocrinologist who started him on a fast-acting insulin and a continuous glucose monitor (CGM).
“It took two to three months to get the right medication and get back on my feet where I started to feel normal again,” Jones said. "With CGM, I've woken up a number of times thanks to the [low blood sugar] alarm on my phone," Jones said. "It would have made my life so much easier from the outset."
Challenges: From diagnosis to ongoing care
Albanese-O’Neill said about 40% of adults with type 1 diabetes are initially misdiagnosed with type 2. She encourages primary care doctors to start CGM use right away and then expedite referrals to specialists.
"Two to four months is too long to wait for insulin," she said. "If there hadn’t been an intervention in the plan of care, and Zach had stayed on metformin and Ozempic, he probably would have ended up in the ER."
Doctors and researchers say people with diabetes face a number of challenges when diagnosed with type 1. Their primary care physicians are often unsure how to treat the disease and unfamiliar with current drug therapies and technologies that lead to better blood sugar management.
And in some cases, patients ask for access to new diabetes technology, but can't get it either because of difficulty with insurance coverage or health care provider lack of familiarity with the technology.
"In his case, Zach asked for a CGM, but the primary care team didn’t feel comfortable prescribing it," Albanese-O’Neil said. "Having to wake up all night and check and not being able to see nocturnal hypoglycemia coming was very stressful for him, as you can imagine. Zach had adequate insurance – he just needed the prescription."
Resources for locating good care
Michelle Yost, a medical scientific liaison in diabetes care for Abbott who also has type 1 diabetes, said finding effective diabetes care can be challenging. She often advises people to advocate for themselves when seeking current diabetes therapies and technology, including CGM and automated insulin delivery (AID) systems.
"Find a provider that keeps up with their diabetes training, as well as the latest advancements in diabetes technology and pharmaceutical agents," Yost advised. "Above all, find a provider that you feel comfortable with, someone who supports you along your diabetes journey.”
For help finding nearby diabetes healthcare providers, see the list of resources below. Some may offer direct assistance and others can help in the search for good care.
Speak with a diabetes educator. Contacting a nearby certified diabetes care and education specialist (CDCES) can help find an experienced primary care doctor or specialist. A CDCES can also offer ongoing support for managing diabetes treatment and are trained in the latest technology.
Find a diabetes self-management education and support (DSMES) program via the Association of Diabetes Care & Education Specialists. The American Diabetes Association's Find a Diabetes Education Program may be helpful for this, too. Yost also recommended reaching out to local medical centers to see if they have a diabetes program.
Connect with a diabetes support group. The Defeat Diabetes Foundation provides a list of diabetes support groups by state. These groups offer people with diabetes and caregivers a place to share their experiences, support each other, and share knowledge about treatment and management. They can also be a good source of recommendations for local healthcare providers.
See recommendations for a doctor. A number of volunteer organizations maintain member-provided lists of recommended physicians for various needs. Here are just a few:
- The Juicebox podcast endocrinologist list
- Loop and Learn's loop-friendly healthcare providers list. Loop and Learn is managed by a team of volunteers who support users of DIY hybrid closed loop systems online.
- Diversity in Diabetes' provider search tool. This nonprofit organization works to create awareness and provide support around underrepresentation in the diabetes field.
The bottom line
People with diabetes often find it difficult to locate good care for managing their condition, including refusals when seeking current technology for blood sugar management, such as CGM and AID systems.
Certified diabetes educators, online guides, and diabetes support groups can all be helpful in locating proper healthcare and getting started with diabetes tech. Yost recommends casting a wide net to locate good care.
"Ask your current healthcare provider, family, friends, or even a local diabetes support group for recommendations," Yost said. "Check a provider’s website to view their bio and see if they have a diabetes certification or experience with tools like CGMs or automated insulin pumps. And call your insurance company to see if they can recommend a clinic or provider that is covered by your plan."
She also recommended talking to other users of diabetes technology. "If you see someone wearing a CGM, introduce yourself and ask if they are willing to share their experience."
Learn more about finding good diabetes care here: