Joe Garcia was only 10 years old in 2009 when he was diagnosed with type 1 diabetes. At that time, the monthly cost of his insulin was $363.42.
Fortunately, his parents, Laurie and Tony Garcia of Osakis, had good insurance and didn’t have to shoulder the brunt of the cost. Prescriptions cost them the $40 copay, and their deductible wasn’t a factor.
Ten years later, because of a change in insurance plans and the ever-increasing cost of their son’s insulin – along with his other supplies – the Garcias were hit with sticker shock. The out-of-pocket cost last month? $1,300.
“That was a huge shock,” said Tony, who was the one to pick up his son’s insulin and supplies from their local pharmacy. Joe is on an insulin pump, which means there are plenty of supplies, including test strips, syringes, cartridges, prep wipes, tape, batteries and more.
Joe said he uses at least 100 units of insulin per day and, on average, four bottles every 40 days.
Tony’s insurance recently switched and the family no longer has a copay for prescriptions. Instead, there is a $2,700 deductible per person, which means the family has to pay the first $2,700 for each family member before insurance kicks in. When it does, they will still have to pay a certain percent instead of a copay, Tony said.
Joe, a 2016 Osakis graduate, is now 21 years old and currently on his dad’s insurance. However, the family recently started discussing their options. Joe will be attending college this fall and more than likely living on his own, and could qualify for medical assistance. The Garcias are leary about it, though, because they don’t know how the state-funded plan works and are afraid their son wouldn’t get the necessary meds, or worse yet, have to pay even more.
The Garcias have also discussed other options for Joe’s insulin and supplies, which include heading to Canada, where they said the cost of his insulin is much cheaper.
Throughout the last decade, Joe has used a couple different brands of insulin – whichever the insurance company will pay for, even though Joe prefers one over the other.
Laurie said the cost of her son’s insulin has increased randomly, including a big increase in 2014. Last month, the cost of just the insulin itself was nearly $900 – almost triple what it was 10 years ago.
Joe can change the setting on his insulin pump to give him a lower dose, but hasn’t because not getting the appropriate amount of insulin can be dangerous. The Garcias have heard of people who have done it and that scares them.
Joe will be insulin dependent for the rest of his life in order to live due to type 1 diabetes. His mom said only about 10 percent of diabetics are type 1, while the rest are type 2. Joe explained that with type 1, a person’s body does not produce insulin. With type 2, a person’s body makes insulin but it can’t use it. Type 2 diabetes can often be controlled through diet and exercise, whereas the Garcias said type 1 cannot.
Regardless of the type, the Garcias said when people are diagnosed with the disease they should do a couple different things – do the research and become educated, and see an endocrinologist, a doctor who specializes in diabetes, among other health issues.
Laurie highly recommends for parents to send their child to Camp Needle Point in Hudson, a camp that is dedicated to children with diabetes.
Local professionals offer help
Dr. Bruce Evink, a physician and medical director at Sanford Health Broadway Clinic in Alexandria, said the cost of medications is not an easy one. The bottom line, he said, is that alternatives can often be found that may help patients find an insulin regimen they can afford. Some of the newer insulin products are great, he said, but are more expensive.
“There are older insulin products whose release mechanism is not as favorable, but will typically be less expensive,” said Evink. “Working closely with the health care team is important to take advantage of reduced cost programs or finding an insulin regimen that is more affordable is important.”
Joy Andersen, a licensed practical nurse at Sanford Health Broadway Clinic, shared advice for diabetics. She said patients with supplemental insurance should make sure their medication is on the formulary, which is an official list of medicines that may be prescribed. If not, she said to talk with their doctor to see if the medication can be changed to one that is on the formulary, so insurance would be more likely to cover it.
Bev Paul, a diabetic educator at Sanford Health Broadway Clinic, said assistance programs are available for people not on Medicare. However, high deductibles from some insurance companies may make it more difficult to get assistance. And those with Medicare Part D programs don’t fit the requirements for many assistance programs, Paul said.
Andersen also suggested patients contact the drug manufacturer directly because it may be able to offer assistance.
At the advice of their pharmacist, the Garcias did exactly that and were provided with a coupon to save them $100 each time for the next year that the prescription for Joe’s insulin is filled.
Other suggestions from Andersen included contacting the Lily Diabetes Solution Center at 1-833-808-1234 for patients using Humalog, Humulin or Basaglar, or using GoodRx.com to help compare prices.
She also said drug companies such as Ozempic and Tresiba have savings cards, and to contact them directly. For patients with no insurance, she suggested contacting the county’s Social Services department or checking out insulinsvalyou.com.
Legislation in the works
On June 21, U.S. Sen. Tina Smith (D-Minnesota) announced plans to introduce legislation to hold insulin manufacturers accountable for excessive increases in the price of life-sustaining insulin.
A member of the Senate House Committee, Smith made her announcement at a Minneapolis community health center. She was joined by Minnesotan Nicole Smith-Holt, who lost her son, Alec, when the high price of insulin forced him to ration his supply.
Smith said her new bill, “Emergency Access to Insulin Act,” would be introduced in remembrance of Alec Smith and would provide emergency access to insulin for people who can’t afford the skyrocketing price of the drug they need to stay alive.
In a press release from her office, Smith said her bill would:
Establish State Insulin Assistance Programs by providing federal grants so states can set up SIAPs, which would provide a short-term insulin supply for uninsured and underinsured patients and help patients identify state, federal and private options to improve insulin affordability long-term.
Ensure insulin manufacturers have skin in the game and take part in ensuring people can access the insulin they need by holding manufacturers accountable to fund SIAPs.
Penalize insulin manufacturers for their history of excessive insulin price spikes, and for future increases in insulin prices beyond inflation.
Promote insulin market competition by reducing exclusivity periods for insulin and other medications from 12 years to seven years to bring “generic” or biosimilar insulin to market faster.