PELICAN RAPIDS, Minn. (Valley News Live) - "The doctor walked in. And the look on his face is like – oh no. And that's when he's like, 'Unfortunately, we found some glucose in her urine and she might have Type 1,'" recounts Billy Milbeck.
"They sent us down to the pharmacy to pick up all of her insulin. And when we got down to the pharmacy – I don't remember if they told us it was $1,000 or $1,200 – just for the supplies that she'd need on a daily basis. And we looked at each other like, 'Wow,'" says his wife Lindsay.
The Milbeck's pay nearly $1,700 every three months for their daughter Londyn's insulin. When they add in her other medical supplies – the family pays about $7,000 every 90 days to keep Londyn alive.
"Just depending on what supplies we need at that time, it could be anywhere from $30, $500, to $2,000 that she needs to live, so we need to figure it out and come up with the money," Lindsay says. “We do whatever we have to. I work two jobs as well.”
“It does consume about half of my income. So at one point, it’s like, gosh – is it worth working outside of the home or am I better off quitting my job so that we can qualify for some assistance and I can be at home to take care of her?” says Linsday.
And they're not alone in their struggle.
"I actually encounter this problem every day. I've already taken two phone calls about this problem already while I've been here," says Douglas Gugel-Bryant, PharmD, BCPS, a Medical Home Pharmacist with Sanford Health. "I have another patient who has had to switch her insurance companies because price is a problem. And her first month – she was going to have to pay $1,800 for all of her diabetes meds, and that's just the diabetes meds alone."
The Milbeck's say the government needs to step in and start holding drug companies accountable.
"It's a four-year-old little kid that's left holding the bag because she needs this every single day to live with no choice – to raise the prices like that?" Billy says. "It's a lot easier to just vote in a board room on raising it a little bit if it's going to make investors happy."
"We live in the United States of America. It's supposed to be one of the greatest places in the whole world. So I think part of it has to be the drug companies being held accountable," he adds.
"It's a combination of the drug companies and the legislation. And I really feel the legislation needs to start backing some of this," Linsday says.
And there are new efforts underway to do just that. After talking with us in December, State Senator Tim Mathern introduced legislation to study diabetes and its costs in North Dakota.
At the federal level, U.S. Senator Amy Klobuchar from Minnesota has also introduced bills to help families afford their medications.
In a statement, she says, "The skyrocketing prices of prescription drugs have made many lifesaving medications unaffordable for the people who need them. This bipartisan legislation offers a commonsense solution for lowering the costs of prescription drugs. It's long past time that Congress put patients before pharmaceutical companies and help Americans get the critical medications they need."
And there are efforts to lower drug prices in the private sector as well. Sanford Health just joined Civica RX, which is a non-profit generic drug company. The group hopes to start making its own generic drugs by April - which could force drug companies to compete and lower their prices.
"They kind of came out and said that some of these current manufacturers are charging an arm and a leg to try to get these medications. And so these health systems are working together to kind of help fund and start up a pharmaceutical company that essentially at the end of the day is a non-profit organization. And so profit is no longer the end goal," Gugel-Bryant says. "The end goal should be to share the medications and make it affordable because at the end of the day, health is what we want – not a dollar."
"Knowing that a hospital is now going to try to manufacture its own meds and have its own supply, will then create a demand within the actual manufacturers and it's now a competitive market," he adds.
While the new efforts are appreciated, the Milbeck's say time will tell if they will truly make a difference for local families.
"The only way that change can happen is to believe and to fight for change," says Billy.
"I guess I'm always hopeful that something could change in the future but at the same time, it seems to only be getting worse," Lindsay continues.