Utah mom enlists Mark Cuban in fight for daughter’s access to insulin

NORTH SALT LAKE — It's a battle reminiscent of David versus Goliath.

A Utah mom is going up against a major drug company, trying to keep a type of insulin on the market that she says is essential for her family.

Alison Smart of North Salt Lake knows it’s a gargantuan task to get the attention of a $500 billion pharmaceutical company. But she’s hopeful.

“It sounds ridiculous,” Smart conceded, “but yet it’s real. I think, why could this not happen? Why not?”

Managing diabetes

Alison Smart’s 15-year-old daughter, Ruby, is busy. She plays tennis, suiting up last season for Woods Cross High School.

Ruby also has diabetes, which makes life more complicated.

“You always have to be aware of what your blood sugar is at and how you're doing,” Ruby said.

She takes a type of insulin called Levemir produced by Denmark-based company Novo Nordisk.

“It’s one of the few insulins that has helped me be able to stay steady while I'm doing exercise,” said Ruby.

But the Smarts were stunned to learn Levemir is being discontinued. The company said this was due to several factors including “global manufacturing constraints, significant insurance formulary losses impacting patient access effective in January 2024, and the availability of alternative options in the U.S. market.”

Alison Smart said none of the insulin alternatives on the market are as good as Levemir.

“They’re not as flexible. There are some side effects that we don't like,” she said. “This one is just right for us.”

[gallery ids="633429,633435,633434,633433,633432,633431,633430"]

Pushing for extra time

Alison Smart is fighting back. She created the Alliance to Protect Insulin Choice, a volunteer organization. She recently traveled to Washington, D.C. twice, lobbying lawmakers to urge Novo Nordisk to keep producing Levemir for a few more years, to give patients more time to find a long-term solution.

“When you're a company that produces a life-sustaining drug that people depend on, it's not OK to just stop that,” Alison Smart said. “We need their help.”

She has also enlisted the help of billionaire Mark Cuban, who founded a company providing low-cost medication.

Cuban confirmed his involvement with Smart’s effort, telling KSL TV in an email, “we would be happy to partner with Novo Nordisk to make sure patients can still get their insulin.”

Alison Smart said Cuban has given her “legitimacy” in speaking with the nation’s lawmakers.

“We'd start to tell our story,” she said, “and eyes might start to kind of glaze over a little bit, and then we mention that we're in contact with Mark Cuban, and they'd always perk up and say, 'OK, well what's next? What can we work on?'”

KSL TV asked Novo Nordisk about Cuban's willingness to help.

“Novo Nordisk continuously explores innovative ways to make our products available and accessible to more patients,” a company spokesman said in an email. “New additions to our distribution channels are always fully and responsibly explored.”

Alison Smart hopes the company will listen.

“We’re doing everything we can,” she said. “It just seems reasonable that they would give us a few more years.”

Related topics