‘Insulin or death’: With prices skyrocketing, diabetes patients navigate obstacles to obtain lifesaving medicine

  • Ella Mattocks, a sophomore at the Williston Northampton School, was diagnosed with Type I diabetes last summer. STAFF PHOTO/KEVIN GUTTING

  • Ella Mattocks, a sophomore at the Williston Northampton School, was diagnosed with Type I diabetes last summer. She holds a pair of insulin injection pens at her Shutesbury home on Friday, Jan. 3, 2020. —STAFF PHOTO/KEVIN GUTTING

  • Ella Mattocks, a sophomore at the Williston Northampton School, was diagnosed with Type I diabetes last summer. She is photographed here at her Shutesbury home. Above photo, she holds a pair of insulin injection pens. STAFF PHOTO/KEVIN GUTTING

Staff Writer
Published: 1/28/2020 10:59:10 AM

Shortly after Ella Mattocks, 16, returned from the Junior Olympics this past July, she discovered she had Type 1 diabetes — a diagnosis that has affected her lifestyle, and left her family looking for cost-saving measures to avoid paying thousands of dollars for insulin.

Mattocks, a sophomore at the Williston Northampton School and a Shutesbury resident, is a strong swimmer and competed in the water polo tournament where she played in eight matches over the course of four days. A blood test the day after she returned showed her blood sugar level at 400 mg/dL — much higher than the average of between 80 to 120.

“I didn’t have the symptoms,” Mattocks said, which include frequent peeing, extreme hunger or unintended weight loss, among others. “I hadn’t experienced any of those things.”

She had originally gone to a CVS clinic to have a urinary tract infection checked out, which involved urine and blood tests. Within 24 hours of the results, she visited a doctor at Baystate Health’s pediatric endocrinology unit in Springfield who determined she had Type 1 diabetes.

There are almost 30 million children and adults in the United States who have diabetes, and nearly 1.4 million Americans are diagnosed with diabetes every year, according to the American Diabetes Association.

There is no known cure for diabetes, which comes in two types — 1 and 2. Both involve an imbalance of insulin, a hormone that helps regulate blood glucose levels. For Type 1 diabetics, the body produces little to no insulin. For Type 2 diabetics, the body has become resistant to insulin’s effects. While not all Type 2 diabetics take insulin, all Type 1 diabetics need it to live.

“It’s like air,” Mattocks said. “I need it to survive.”

Not only did the diagnosis surprise Mattocks and her parents, but the price of insulin came as a surprise as well. The price for a month’s worth of insulin, even with insurance, totaled $600. Without insurance, the price would have doubled to $1,200 per month, according to Mattocks’ mother, Kristin Mattocks.

Kristin Mattocks works for the U.S. Department of Veterans Affairs and gets her insurance from Blue Cross Blue Shield, but she found that most of the cost of insulin is not covered under her plan. Through researching online, she discovered coupons for both types of insulin, which brought down the price of each vial down to $25 each.

There are insulin manufacturers that offer coupons reducing monthly out-of-pocket costs, though not everybody qualifies for them. The American Diabetes Association connects patients to assistance programs through www.insulinhelp.org. Patients can look up drug prices at multiple drugstores and get coupons for discounts at the pharmacy at www.GoodRx.com.

“It’s completely ridiculous that you should have a coupon for something that saves your life,” Kristin Mattocks said. She noted that the coupons are only valid for people who have commercial insurance — like Blue Cross Blue Shield — and not covered by state or federal plans such as Medicare or Medicaid.

Ella Mattocks takes two types of insulin each day. One is short-acting and she takes it before meals while the other is long-lasting and she takes it at the end of the day.

It took Mattocks a few months to learn how to manage taking insulin and the effects it had on her, especially when playing water polo. Sometimes she would take too much or too little, and it would make her feel “horrible,” she said.

“If I had low blood sugar, I’d shake and have headaches and feel dizzy,” Mattocks said. “When I was playing water polo, I’d start to shake violently because I had taken too much prior to it … I’m better now, I can’t take insulin before I play or else my blood sugar is too low … Water polo is my passion and joy and I couldn’t do it as well before. Now I’ve gotten it under control and I’m back to where I was before I got diagnosed.”

Chelsea Gordner, an endocrinologist at Baystate, said Type 1 diabetics have to make over 200 decisions per day in order to maintain their blood sugar at healthy levels when considering the types of food they eat, the amount of stress in their lives, how much exercise they get, and even hormones.

The soaring costs of insulin are also a major concern that patients come to Gordner with.

In the past decade, the prices of insulin in the United States have tripled, according to IBM Watson Health, a healthcare technology company. In 1996, the price of a 10-milliliter vial of Humalog brand insulin — produced by Eli Lilly — was $21. The same vial now costs $275.

Eli Lilly, an American company, is one of three companies that dominate the global insulin market; Sanofi, of France, and Novo Nordisk, of Denmark, are the other two. The prices of the insulin produced by the other two companies have risen at similar levels. Vials priced at $35 and $40, respectively, in 2001 are now $270 and $289.

“Pharmaceutical companies determine how much to charge for their product,” Gordner said. “It’s not regulated by anyone.”

Ella Mattocks said she considers herself lucky because there are many other Type 1 diabetes patients who cannot afford the medication and resort to drastic measures to try to get their medication to last.

“People have to ration insulin, and without it, their bodies begin breaking down if you don’t take insulin, and they can have seizures,” Ella Mattocks said.

The start of the new year can be an especially difficult time for Type 1 diabetics who have high deductibles, noted Gordner. For them, rationing their insulin — meaning they try to make a month’s supply last longer than intended by taking less — or taking medication every other day can lead to very harmful and detrimental effects.

“I’ve had patients who have had a stroke, and one who lost a leg due to an untreated foot wound, and both of these patients were permanently disabled and had to go into nursing homes,” Gordner said.

Diabetics are at a higher risk of having untreated foot wounds due to bad blood circulation that causes them to lose the sensation of their feet due to damaged nerve endings. This loss of sensation can mean small cuts go untreated, which if they become infected, can require the amputation of a foot.

Even though there is a cheaper, generic form of insulin that can be found at Walmart for $25, there is a high risk of hypoglycemia, or low blood sugar levels, due to the generic insulin products being older forms of insulin that are not as effective as modern ones, according to Gordner.

She added, “When you have Type 1 diabetes, (insulin) is life-saving. Within a few days without it, you can die. It’s not an option. It’s insulin or death. Something has to change.”

Luis Fieldman can be reached at lfieldman@gazettenet.com.


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