'Just trying to get through the week’

Type 1 diabetes care is expensive and unending. For people who need it, there is a little bit of help out there.

By Patrick Sullivan | Jan. 7, 2017

Ryan Dobry Hunt had to cancel the first interview.

She’d agreed to meet to talk about her nonprofit that helps people who are financially struggling with Type 1 diabetes.

But she had a blood sugar emergency.

A malfunctioning insulin pump caused her to get too much of the synthetic blood-regulating hormone, and she woke up with a dangerously low blood sugar level, which caused her to voraciously eat in an effort to get it back up. She wound up eating too much and found herself with a blood sugar level that was perilously high.

“When you get this up and down and up and down in a day, it fatigues you, it weakens you, it affects your cognitive thinking,” Dobry Hunt said. “I don’t dare drive my car anywhere (in that condition) for fear that I might have an accident behind the wheel. I certainly don’t want to hurt somebody else.”

Dobry Hunt, who was diagnosed with Type 1 diabetes in 1977 at the age of 23, knows the ups and downs of struggling with the disease. That’s why she started a nonprofit to help people overcome the financial, physical and emotional hardships it brings to their lives.

NOWHERE TO GO

Dobry Hunt is comfortable now — her insulin pump was under warranty and she was rushed a new one; she’s got insurance that covers most of her expenses and can afford the cost of the rest — but there was a time when she struggled.

She remembers being a single mom who was trying to get started as a country music DJ, a job that pays little enough to make it a challenge for someone who is single and healthy.

“There were times when I was taking from the rent money just to buy the supplies to stay alive,” Dobry Hunt said. “When I got to a position in my life where I was comfortable financially, I wanted to help other people that were in the same position, because there was really nowhere to go.”

She started the Ryan Dobry Diabetes Charity in 2000 with her husband, James Hunt, a Traverse City attorney. It’s a modest nonprofit that holds an annual golf fundraiser and another event or two each year to raise money to help people who are having trouble paying for the cost of Type 1 diabetes treatment.

Type 1 diabetes strikes out of nowhere, often in children, unlike Type 2 diabetes, which is tied to lifestyle. The origin of Type 1 diabetes remains a mystery. That means the people who get it and their families are often left scared and feeling alone.

Dobry Hunt’s charity has sent children to diabetes camp, donated supplies to struggling patients, and supports northern Michigan health clinics and diabetes education at Munson Medical Center.

The charity also holds group support meetings every month for people with Type 1 and their caregivers. The December meeting saw 21 people attend.

“In the 15 years, we’ve had good years with donations and we’ve had bad years with donations,” she said. “This started with a handful of my friends and it’s still just a handful of my friends. Everybody works. Nobody gets paid.”

SO MUCH TO PAY

Diabetes care is expensive. The costs pile up every day and add up month after month and year after year.

One source of frustration and anger among diabetes patients is the incredibly high cost of the one thing they need to stay alive — insulin.

“When I was diagnosed in 1977, I paid $7 for a bottle of insulin, and now it’s about $300 a bottle,” Dobry Hunt said.

The cost of test strips to measure blood sugar, the insulin pump, and the materials needed to make it work add up to additional hundreds of dollars per month.

Much of her costs are covered by her insurance. For diabetes treatment alone, Dobry Hunt estimates she pays $944 per month, including her insurance premium. That doesn’t include doctor’s office visits or the medications she has to take for secondary health problems that are caused by diabetes.

She used to have a more expensive health plan that covered more of her costs; she’s experimented over the years with different kinds of plans. She said she’s determined that it’s important to have good health insurance because diabetes spurs other health problems that require even more medical treatment.

Dobry estimates she pays $15,000 per year in health care costs because of diabetes. She said that cost would double or triple if she didn’t have health insurance.

“It’s a tough disease to deal with. When I was diagnosed in 1977, I certainly thought that by 2000 we would be on the road to a cure, and here it is, almost 2017, and there’ve been a lot of news on social media regarding an artificial pancreas, but what they’ve come out with are a couple of different types of insulin pumps, but they are not an artificial pancreas,” she said. “It would be great. It would be great to make the disease go away.”

CRUSHING HEALTH CARE COSTS

Brooke and Jesse Beardslee’s 7-year-old daughter Alexandra was 3 when she was diagnosed with Type 1 diabetes.

It’s been emotionally and financially trying ever since. Brooke estimates the health-care costs for her daughter in 2016 reached $35,000. Fortunately, her husband has good health insurance and they are responsible for just a fraction of that.

“I can’t imagine if he didn’t have good insurance, how it would be,” she said. “If we didn’t, I don’t know. It would be very, very difficult.”

For example, Alexandra is eligible for Medicaid because she suffers from a chronic disease, which helps the Beardslees supplement some of the co-pays for doctor’s office visits and insulin.

If they didn’t have primary insurance and had to depend on Medicaid alone, they would be swamped in monthly bills because Medicaid won’t cover the costs of supplies for Alexandra’s insulin pump or her blood sugar monitor, which she needs in order to be able to go to school.

“I find it crazy that they don’t pay for that,” Brooke said. “If that’s all they have for insurance, Medicaid won’t help cover that for people, and I really think it should.”

Alexandra is doing well despite the tough circumstances.

“She has a really good personality, so that helps,” Brooke said.

Beardslee met Dobry Hunt when she came into the dentist office where Brooke works and they started talking. The Beardlees have found a lot of comfort in her charity’s monthly meetings.

“We do enjoy going; we don’t even always talk about diabetes,” she said. “I think knowing everybody’s in the same boat helps.”

THRIVING DESPITE DIAGNOSIS

Aubrey Chartier was the first child the nonprofit sent to diabetes camp.

That was 15 years ago. Today, Chartier is 23 and has been accepted to medical school. She wants to become a pediatric endocrinologist.

She believes having diabetes will make her better at treating children with the disease. She said her doctors never really understood what she was going through.

“I think there might have been one dietician later in my adolescence (who had diabetes), but no, my doctors didn’t have the same perspective that I did,” Chartier said.

Chartier said it was a big deal to be able to go to camp with other kids with diabetes.

“I think the biggest thing was realizing I wasn’t the only one with diabetes,” she said. “At the time in Traverse City, I was like the first person to teach my school system how to deal with it. I went to support groups, but no one was my age.”

Camp was a revelation. She attended for seven years and made good friends she was able to relate to in ways she couldn’t with most other people.

Being able to go to camp and having a very supportive family enabled Chartier to thrive despite her diagnosis.

She said that Dobry Hunt, whom she’s remained close with, taught her how important it is to help people who are struggling to cope with diabetes. Sure, it’s fine to donate to research organizations that are searching for a cure, but until that cure comes, there are people who are suffering.

“It’s one thing to look for a cure and all that kind of stuff, but it’s a completely different ballgame to help families with the challenges they deal with,” she said. “It’s like, yeah, a cure would be great, but I’m kind of just trying to make it through this week."

PHOTO: Jesse and Brooke Beardslee’s daughter, Alexandra, has Type 1 diabetes. Brooke estimated health-care costs for Alexandra reached $35,000 in 2016. KAYLA KEENAN/FOR THE EXPRESS