FARGO, N.D. (Valley News Live) - "Imagine picking up a prescription for 90 days to keep your child alive with the retail price of $3,900. Right here in Fargo," says Danelle Johnson, whose daughter has type 1 diabetes. "That's my two girls, and that's why I do this. The one on the left is the one that has Type 1. The one on the right is her older sister, and I want them to be able to live a long, healthy life together without all of these burdens and worries."
Johnson says the rising cost of insulin hurts her family financially and emotionally. Last year, her insurance company paid a total of $30,000 dollars for the medication and the prices keep climbing.
"Her insulin for 90 days is $3,946.99. That's the retail price. In our case, we pay 20% - well, 20% of $4,000 every month is a lot. It adds up very quickly," she says. "It's heart breaking to see in America that people who need this to live are charged that kind of money. If you don't have insurance, how on earth would you pay that for 90 days?"
It isn't just the families of diabetics who are paying the price for high insulin costs.
"So then the next year, we pay higher premiums – as do all of the other employees. As does your business, who carries insurance for their employees. So it is definitely a drain on the funds in society," Johnson says.
"It's something that is driving health care costs. So we have the micro issue of the individual family, and the macro issue of how it's impacting our entire health care system," says State Senator Tim Mathern, (D – 11th District). "Everyone is impacted because the cost – millions and millions and millions of dollars, just in North Dakota – for the care of persons with diabetes, is really spread amongst all of us."
Now, Johnson is teaming up with Mathern - to stand up for all North Dakota families.
Mathern introduced Resolution 4002, which wants diabetes and its treatments studied.
"It has been my experience in North Dakota – it's difficult to get legislators to pass legislation – especially if it's going to cost the money. And so the first step has to be some education," he says. "It makes me hopeful. It takes it from this legislator understanding from this family what the problems are – to 18 legislators in a study group to understand the bigger issues. When you have more legislators understanding this, then there's a greater chance for action."
Mathern says there's no timeline for this process, leaving some families with mixed feelings.
"It takes a long time. And for these families that have family members with diabetes – it's too long. For them, it's catastrophic. But the reality is, it takes that long for the legislature to understand the issue and take action," Mathern says.
"It was great to have the initiative introduced to the legislature – but it's really just studying it, which is going to give two years to people to see what we already know. We know families are suffering," says Johnson. "I want all the legislators to know that I am 100% certain that every one of them has someone in their district that deals with this disease. They may not know them, they may not know about them – but if they start asking, they're going to hear stories about what it has done to families. We can't just give up and say it's going to take too long."
We reached out to the two drug companies who recently raised the price of their insulin - Novo Nordisk and Sanofi.
In a statement, Novo Nordisk says:
"We haven't had a chance to review the resolution so it wouldn't be appropriate for us to provide any comment. However, our data suggests that 78% of people in non-high deductible commercial health plans pay $50 or less for a prescription of one of our insulin analogs, and what people with insurance pay for our medicines is due, in large part, to benefit design. We know that the list price may affect those who are underinsured, uninsured or are in the Medicare Part D coverage gap. For patients who are not in a government-insured plan, we offer discount programs via co-pay cards and, if they qualify, patient assistance. Those in Medicare Part D can apply for our patient assistance program to see if they qualify.
Additionally, Relion, a Wal-Mart brand using Novo Nordisk human insulin, has been available at less than $25/vial for more than 10 years. And people can sign up for programs offered by CVS and ESI (Express Scripts) to buy human insulin for approximately $25/vial at those companies' affiliated pharmacies.
For those seeking help, we offer information about a variety of support options at NovoCare.com."
In a statement, Sanofi says:
"Sanofi shares concerns regarding people living with diabetes who are having trouble accessing the medicines they need.
About 85% of people who manage their diabetes with Sanofi insulins pay less than $50 a month for their Sanofi medicine. However, the tragedy of patients skipping or rationing their insulin due to financial hardships is one of the many reasons Sanofi is committed to making our insulins more affordable to all patients. We encourage anyone who is prescribed a Sanofi medicine, and who may be having financial challenges or trouble navigating their insurance, to call Sanofi Patient Connection at (888) 847-4877 where eligible patients can be connected to the medicines and resources they need at no cost.
In 2017, Sanofi announced one of the industry's most progressive policies in terms of pricing. The policy includes three pillars – 1) a clear rationale for the launch price of a new medicine; 2) limiting price increases in the U.S. to no greater than medical inflation as determined by the U.S. National Health Expenditure growth rate; and 3) greater transparency on the average list price increases and net increases (or decreases) of our portfolio of prescription medicines. The result of these concrete actions is a very modest list price increase of only 1.6% and a net price decrease of 8.4% in 2017 across all of our products.
It is estimated that the biopharmaceutical industry pays over $150 billion in discounts and rebates to PBMs and health insurance companies annually. For example, over the last five years, the net price of Lantus, the most prescribed long-acting insulin, has actually declined due to significant discounts and rebates given to pharmacy benefit manufacturers. Unfortunately, these savings are not consistently passed through to patients in the form of lower co-pays or coinsurance which could be the result of changes to insurance design. In some cases, these discounts and rebates have increased at a higher rate than the list price.
As a company, we take this access and affordability issues seriously and continue to explore innovative ways to find solutions to help eliminate or significantly reduce the out-of-pocket expenses for patients, including those who are uninsured, underinsured or on high deductible insurance plans. For example:
• The Insulins Valyou Savings Program offers all uninsured and commercially insured patients – regardless of income level – one set price ($99 for a 10 mL vial or $149 for a box of pens) to help lower out-of-pocket costs for Sanofi insulins (Lantus, Toujeo, Admelog, and Apidra). For some patients with diabetes, the program could offer a savings of up to $3,000 per year.
• We also have co-pay programs which may limit out-of-pocket expenses – sometimes to $0 for commercially insured patients in the U.S., regardless of reimbursement status on an insurance plan. This aims to ensure cost-sharing is not a barrier to medication access.
• We provide medications at no charge for qualified low-income, uninsured patients through the patient assistance component of the Sanofi Patient Connection program."
Experts tell us, the statements don't tell the whole story. A lot of families have high deductible plans, so not everyone is able to get a $50 rate for their insulin medication.
Doctors say the discounted insulin is also an older formula, which is less reliable and requires more shots per day.