Advocacy and empowerment: how one Oklahoma woman is managing her diabetes diagnosis
Oklahoma ranks fifth in the nation for deaths due to diabetes, and Native people are three times as likely to be diagnosed with the disease than their non-Native peers. One woman in Oklahoma City is determined not to let the disease get in the way of her activism.
The first thing you need to know about Frances is that the last name she goes by is Danger.
Sporting all black, donning horn-rimmed glasses and beaded bat earrings that matched her socks quite well, Frances showed me around the gallery she and her mother own in Oklahoma City showcasing Indigenous artists. It's called Carpe Artem, a name her mom came up with referring to "seize the art."
"I like to say that this is what would happen if the Paseo and the Plaza got together and had a baby," she laughed, talking about two popular neighborhood entertainment districts in Oklahoma City.
"We're kind of in the middle of both, and that's where you get the best of both worlds at Carpe Artem," said Frances.
Frances is an artist, a writer and is active in politics. But, late last summer, she noticed she wasn't feeling well. She felt a lump in her breast that hurt and was hot to the touch. She immediately sought medical care at the Indian Health Service clinic in Oklahoma City, where she's gone her entire life.
"I have breast cancer on both sides of my family," said Frances, noting that her mother had a very aggressive form of breast cancer. "So, I take this very seriously and when I feel a lump, I go."
Frances says normally this IHS clinic is very good about follow up and communication, but what ensued felt like a nightmare for her. A diagnostic mammogram that was ordered and marked urgent never materialized. She kept feeling worse. Finally, she sought care elsewhere.
Frances has private insurance and says she was tired of waiting for IHS to get her a referral. So, she walked into a local hospital and finally found out what was wrong after blood was drawn.
The doctor at the hospital said something very shocking.
"He said, 'your blood sugar is over 700,'" recounted Frances. "You are in a situation where you could potentially have a stroke and die."
She had been told she was pre-diabetic, but was staying on top of her health.
Frances spent days in the hospital, but got better, only after being pumped full of antibiotics and insulin. She found out she was diabetic, something she felt IHS should have caught in one of her previous visits.
Several factors lead to high rates of diabetes for young people, including lack of access to fresh, healthy food and the introduction of commodity and high starch foods. According to the Centers for Disease Control and Prevention, between 1994 and 2004, the rate of people 35 and older that were diagnosed with diabetes doubles. In 2004, tribal leaders from across the country brought their concerns about the disease that was devastating their communities to congress. That same year, the Indian Health Service launched the Special Diabetes Program for Indians in cooperation with the CDC.
The Citizen Potawatomi Nation administers their own program to combat the disease. It's called BEAD, which stands for Building Education about Diabetes. Citizens participate in a class where they share their own experiences about the disease, how it's affected their lives and families.
Katie Brown, the tribal nation's diabetes program coordinator, says that one part of the class that has had the most impact is just learning how to eat healthier.
"I think they expect me to say we're all going to eat kale salads every day for the rest of our life, and we'll be good," joked Brown. "But, I've had patients bring in recipes or things that they want to try differently, or they'll bring in something that their family really likes."
Aside from the health risks and the constant care-there's also the cost of diabetes medication-which can be very expensive. Last summer, Congress passed the Inflation Reduction Act, which caps the cost of insulin at $35 per month for Medicare recipients.
That's why Brown advocates for things like CGM, continuous glucose monitoring.
"If we can decrease long term complications, which have the biggest cost impact on our health care system, we can better manage our blood sugar," said Brown.
For now, Frances needs that medication. Even though she said she had difficulty getting her prescription filled at the IHS clinic in Oklahoma City. Despite that, Frances says she will continue her care there. The biggest reason is that her medication is covered there.
"It costs a lot of money to be diabetic, and I don't have a lot of money, so I can get my insulin covered at the clinic. I can get my metformin covered at the Indian clinic-like it costs me nothing," she said.
Frances says she feels lucky because she has the time and the will to call attention to things she sees as wrong, like getting what she felt like was the runaround from Indian Health Service in Oklahoma City.
KOSU reached out to IHS, but didn't receive a comment about the allegations Frances made.
For now, though, she says she's going to make some changes to her lifestyle, like healthier eating, drinking more water and more exercise.
"I love to dance," said Frances about the kind of exercise she enjoys.
She'll continue to advocate for her health and her work advocating for Native voices.