GRAND RAPIDS, Mich. (WOOD) — The Lockwood family was desperate.
“This is life or death,” said Rachael Lockwood from the family room of her Gowen home on Wednesday afternoon. “It’s not optional. My kids need (insulin) to live.”
And it’s not just one kid, either.
“Us three were diagnosed with type 1 diabetes,” explained Brady, 12, referring to himself, his 7-year-old brother Cyrus, and his 16-year-old sister, Joci.
Lockwood told Target 8 she was notified in the fall that Medicaid would no longer cover the kind of insulin her children use.
When she checked the out-of-pocket price, she was shocked.
“A one-month supply of Novolog is $606 — and that’s for one kid,” Lockwood said.
The soaring price of insulin, which quadrupled over a decade, has been the subject of recent Congressional hearings, and Republicans and Democrats alike are working with President Trump to find solutions.
“There’s been a lot of pressure on drugmakers and a lot of discussion in Congress about what to do about those prices,” said Marianne Udow-Phillips, who is the executive director of the University of Michigan’s Center for Health and Research Transformation.
“But there hasn’t yet been real action to lower those drug prices,” she continued. “We see pharmacy manufacturers voluntarily coming out and making some changes. Eli Lilly, just in the last few days, came out and said they’ll be offering a generic alternative to their most popular drug that will be half the price.”
But that’s still out of reach for the Lockwood family, who recently traveled three hours to Sarnia, Ontario to purchase insulin at a pharmacy 2 miles over the border.
“We purchased a year’s supply of the same exact insulin no longer covered by our insurance in the U.S,” Lockwood said. “We bought (it) without a prescription for approximately 12 percent of the U.S. price. We saved over $6,500. When I can buy the same exact thing for 11 or 12 percent of the cost in Canada, then something’s wrong. Something is very wrong with the way we are pricing things in the U.S and the way our healthcare works.”
Udow-Phillips said Canada has much lower drug prices because its government regulates them, unlike the United States.
“The big issue with insulin drugs (in the U.S.), and with many other high-cost drugs for consumers, is, frankly, it’s the lack of competition and the lack of generic alternatives,” Udow-Phillips explained.
“In the U.S. we have the patent system that was designed to help encourage drug makers to test new drugs,” she continued. “It makes sense that when a drug actually works after going through all the extensive years of development and testing, that the manufacturer would get some patent protection. But those laws have also been used in ways that extend patents for many more years than they were originally intended and that really inhibits competition.”
In addition, the pharmaceutical industry has a long and complex supply chain which includes manufacturers, wholesalers and the pharmacies themselves, among others.
“In the middle you have pharmacy benefits managers who are negotiating between the health plans and those wholesalers,” Udow-Phillips said. “So it is a very complex supply chain and there are a lot of add-ons that go on through that supply chain. We could simplify a lot of that with a different kind of approach.”
Udow-Phillips wants leaders to look for ways to change the patent process to allow for more competition.
But she says Congress and President Trump are currently focused on getting rebates to customers and forcing price transparency, among other potential solutions.
Whatever solutions are ultimately adopted, Udow-Phillips said a fix won’t be quick and still could be years away.
Meanwhile, the Lockwoods will keep traveling as needed to maintain their insulin supply.
The Lockwoods have eight children in all, three of whom are adopted. The three youngsters with type 1 diabetes are biological children.
“Our budget is tight. We have eight children on one income and we are stretched and we have to give up other things in order to get the things that keep my kids alive and it’s not right,” Lockwood said. “It’s not right. We live in the United States. We’re supposed to be the most advanced country and yet we’re putting people’s health at risk for profit.”
At age 7, Cyrus was diagnosed with type 1 diabetes six weeks ago. When that happened, his brother Brady hugged him tight, sad that Cyrus would have to go through the same ordeal he experiences.
“(I was) crying,” Brady explained. “Because I felt bad for him.”
Below are the statements received by Target 8 from Eli Lilly, NovoNordisk and Sanofi, three major insulin manufacturers in the United States.
“Lilly is been working to provide a variety of resources for people. In August, we announced the opening of the Lilly Diabetes Solution Center, which allows people to consult with live, U.S.-based operators on cost-saving solutions that may be available (currently more than 10,000 people each month are finding significant savings through the Solution Center and other options we are offering). It would be great if you can broadcast the phone number so your viewers can be made aware of potential help for their situation.
Earlier this month, we also announced an authorized generic version of Humalog which will be priced at 50 percent less than branded Humalog.”
“While many can access and afford their medication through insurance coverage, we know that as the healthcare system has changed, a growing number of
Americans with diabetes struggle to pay for their healthcare, and this can include paying for medicines produced by us.
In 2016, we made a commitment to keep annual list price increases below 10%, and we’ll continue to take actions that we believe help patients access the medicines they need. Today, our single biggest investment to ensuring patients can afford our medicines comes via rebates and discounts (64.1% in 2017) to make our medicines widely available on drug formularies.
For those seeking help, we offer a variety of support options at NovoCare.com and anyone in the US in need of insulin can buy Novo Nordisk human insulin at many retail pharmacies nationwide for $25 per vial.
We, and most others in the healthcare system, agree that what we currently have needs to change in order to find long-term ways to reduce the burdens for patients. We’ve offered policy ideas (H.R.4978 / S.2410) like having high deductible health plans offer chronic disease prevention services before patients satisfy their deductible and get the help they need to afford their diabetes medications. We look forward to continuing to
work others in the supply chain on this important issue for patients.”
“Please know that 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.
Sanofi is the only insulin manufacturer to offer a program that provides one set price $99 for a 10mL vial of insulin or $149 for a box of insulin pens for patients exposed to high retail prices. Sanofi also offers co-pay programs that commercially insured patient can use to limit out-of-pocket expenses sometimes to $0. There is no related income criteria for either of these programs. The only people ineligible for our programs are those insured by federal programs, including Medicare and Medicare Part D, due to federal rules. Sanofi supports changes to these rules that would allow all patients to benefit from assistance programs.
Since 2012, the net price of our insulins have declined by 25 percent yet out of pocket costs for patients have continued to rise. Sanofi supports reforming the current healthcare system so these savings are passed on to patients.”
**Correction: The original version of this article misspelled Rachael Lockwood’s first name as Rachel. It also misspelled Novolog as Novalog. The errors have been corrected. We regret the mistakes.