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'Nobody was happy about it': Michigan family moves to Ohio to lower insulin costs

Their move comes before a proposed bill that would 'cap' insulin costs
Posted at 7:11 PM, May 06, 2021
and last updated 2021-05-10 08:50:55-04

The Rising Cost of Insulin
Since the 1990s, diabetes advocacy groups estimate the cost of insulin has gone up by over 1,200 percent. The drug is used primarily by Type 1 diabetics but can also be used by a small number of Type 2 diabetics, depending on their condition.

Type 1 is a chronic condition in which the pancreas produces little or no insulin. As a result, those with Type 1 need to take insulin, a life-saving drug that regulates blood sugar levels to keep people alive. Despite the need for overall quality of life and health, insulin is often considered the "poster child" for price gouging.

T1 International, a diabetes advocacy group, reports that most insulin can be manufactured by pharmaceutical companies for less than $7 per vial, but some patients find themselves paying upwards of $300 to $400 for one vial of insulin. Most patients need two to three vials per month, in order to meet their bodies' needs.

The price per vial varies largely by the type of insurance held, but even those that are fully insured often find themselves fighting with insurance companies to cover costs.

Differences between insulin
There are three different kinds of insulin: rapid-acting insulin, long-acting insulin, and super-fast-acting insulin. Some diabetics use just one kind of insulin, while others use a combination between rapid-acting insulin and long-acting insulin, which are taken at different times of the day such as after a meal.

Three manufacturers produce roughly 90 percent of the insulin globally available: Eli Lilly, Novo Nordisk, and Sanofi.

When a diabetic becomes accustomed to using one type of insulin, they typically try to remain on it if it's doing its job successfully. With insurance companies regulating which insulin types are covered and which aren't, many are forced to switch despite the damaging effects it may have on their health.

Diabetics forced to search for lower costs
Because of the struggle to find affordable insulin, many diabetics will turn to other methods to take the life-saving drug. Before the pandemic, many were traveling to Canada, where insulin would be offered at a fraction of the price with a prescription at any pharmacy across the border.

Others turn to the "black market," which operates as a mutual aid bucket for those who need insulin urgently. Those who have excess insulin that will expire "donate" the vials to those who can't afford or have access to insulin.

Legally, the black market surrounding insulin is a gray area. Technically, no one is allowed to distribute drugs for financial gain, but those who donate or receive insulin through this method do not exchange funds. Those who are looking to gain monetary, we are told, are banned out quickly from the system that typically communicates over social media.

Unfortunately, those who have no other way to reduce costs or gain access to insulin will ration, or take less than the recommended amount of insulin per day to stretch their supply over time. The strategy is dangerous, with multiple deaths occurring as a result.

Surveys conducted within the diabetic community find that roughly 25 percent of diabetics ration insulin or have rationed in the past to stay alive.

Michigan family moves in search of lower insulin costs
Originally from Greenville, the Lockwoods never imagined they would move from the state. Rachael and Jim met during a camp job in Michigan and raised their family in the Wolverine State up until recently.

Together, Rachael and Jim have eight children. Five are biological, and three of their biological kids have Type 1 diabetes. The first diagnosis came as a complete shock because the disease had never run on either side of their family tree before.

"Without having diabetes in either of our family trees, the first diagnosis was a complete surprise to us," said Rachel. "We had no idea. Really, we didn’t know what it was and the seriousness of it. And we certainly didn’t realize that there would be a higher probability of other children in our family becoming Type 1 as well."

Brady was the first to be diagnosed at age 2. His older sister Joci was diagnosed at age 12. Cyrus was last to be diagnosed at age 7.

The struggle to find insulin has been a 13-year journey for the Lockwoods, with the last diagnosis only emphasizing the difficulty and the cost. At the time, the family was on Medicaid because Rachael and Jim worked in the nonprofit sector that did not offer employer-sponsored health insurance.

The type of insulin the children were using was suddenly pulled from coverage under Medicaid.

"They are not all the same, and it can be tricky to figure out how the body reacts. So one unit, compared to another, can drastically make a difference in your blood sugar."

When Rachael asked the pharmacist what the out-of-pocket cost would be so her children could stay on the insulin that was working for them, she was told it would be more than $600 per child.

"It feels unfair when you know something is just behind that counter at the pharmacy, but it’s unattainable," said Rachael. "It might as well be across the country because it is just not feasible. You can’t afford it. But to know that it’s within reach, and right there, is extremely frustrating and discouraging and seemingly unfair."

The Lockwoods began making regular trips to Canada to get the insulin needed for their kids at a fraction of the cost. When the pandemic took hold, Canada shut its border. The option to travel for cheaper insulin was no longer possible.

There was still an alternative to have the insulin shipped from a Canadian pharmacy, but as Rachael continued researching different options, it became clear it was not guaranteed that the insulin would be shipped within a temperature-controlled environment. The issue became a point of worry because insulin is only good at room temperature for up to 28 days.

The Lockwoods had been searching for better insurance for a little while when a new job opportunity presented itself in Ohio. The difference in coverage would ease the stress of wondering how the family would be able to get insulin at an affordable price each month.

"The choice to leave a job that you absolutely love, and a place that you love... A choice to leave home--that’s a pretty monumental choice. That’s a significant choice to have to make, but a choice that every caring parent would make and a certain choice that we have made," said Jim.

The couple broke the news to their kids, who were devastated by the decision and questioned if there was no other option available.

"Nobody was happy about it. I think everybody was hoping to find a different solution, like do we really need to do this? Is this really important? But I do think we try hard to explain to our kids and our family that everybody gets what they need, not what they want. In our opinion, this was a need that our family had, so I think eventually everybody was understanding of that need."

Rachael can now get insulin from her local pharmacy. The amount comes to $0 per child each month, with the insurance covering more than $600 of the cost.

"I almost cried on the way home because I thought, I kind of told myself, inside, 'We did it.' We made it work, and we got this insulin in our town 5 minutes from our home, but what did it take to get there?"

New Michigan legislation proposed to limit insulin costs
Representative Cambensy, D-Marquette, proposed legislation in the Michigan House that would cap co-pay costs for insulin. Other states have already passed similar bills in states. Michigan would be the 17th state if it passes.

HB 4346 passed the Michigan House with bipartisan support and multiple co-sponsors in late March.

The bill would "cap" co-pay costs at $50 per month for any insulin prescription for those that are state-sponsored insurance plans. Those who are self-insured or those who work for small businesses that offer insurance are most likely to qualify, if the bill gets the green light.

People that would not be eligible under the way the bill is currently written includes: those on Medicaid, Medicare or who work for large companies that create their own employer-sponsored health care plans.

A Type 1 diabetic herself, Representative Cambensy says it's the least legislators can do to ease the cost of insulin for those who are struggling to afford it.

"These families have been suffering to the point where they're looking at all the other alternatives. They're looking at if they can go to Canada to purchase it cheaper," said Representative Cambensy. "Why should we have them do that when you know we're not doing the work here as the representatives. So, it's been rewarding. I know it's... you know it's a tough sell on a lot of the industries that have been able to make money off of it, so it's gonna be a tough push, but it feels good when you get that feedback from your colleagues on both sides of the aisle that that see the merit in this bill."

Criticism over the bill
The bill has received criticism from economic organizations such as the Grand Rapids Chamber of Commerce. The Michigan Association of Health Plans also testified during discussion of the bill in the Michigan House in opposition of the bill's passing.

Dominick Pallone, executive director for the Michigan Association of Health Plans, is concerned the bill will have an adverse effect on premiums, especially for plans that are affected in this bill.

"If that premium goes up for that employer, and then employer is forced to make the choice to provide, to no longer be able to provide coverage to their employees, what may look like a help to that individual may actually cost them their entirety of their health care coverage," said Pallone.

Pallone argues the brunt of the cost would be on small businesses who offer insurance rather than the pharmaceutical companies that set the astronomical drug prices.

"We would much prefer to work with the advocates in this space on trying to address real reform and trying to get real savings, and not just cost shifting, which unfortunately, this bill does," said Pallone.

Pushback in the diabetic community
There has also been pushback in the diabetic community regarding the bill, with advocates saying the bill would not help enough people reduce their insulin costs. Current estimates say that roughly 40,000 to 50,000 diabetics would be impacted by the insulin co-pay cap legislation if it passes.

"That’s the thing about diabetes. It’s like you have this disease--you have the same disease as everyone. It’s so hard, and then you have to qualify to get aid. It’s like, it’s already hard as it is, but then maybe you don’t qualify this way or that way," said Lauren Tripp, a Type 1 diabetic from Hastings.

Because Tripp is self-insured, she would qualify. She currently pays $100 for a one-month supply of insulin. If the bill is successful, it would reduce her cost to $50 per month. However, those aren't the only costs to maintain her health.

Tripp currently budgets for up to $30,000 for her diabetes costs between her premium, office visits, supplies and insulin.

Tripp is in favor of a "price cap" on insulin, which would force the drug companies to "cap" the list price at a certain amount. That method would mean every diabetic would benefit from some kind of price reduction.

"I have insurance, and I can afford my insulin. I would prefer to see legislation and all the energy put into legislation that helps more people," said Tripp.

Representative Cambensy agrees that there should be a price cap but says that mandate would have to come from federal legislation, saying state legislators can only do so much to reduce pharmaceutical costs.

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