Medicare’s $35-a-month insulin cap still leaves many residents out of luck

• More than 100,000 Michigan diabetics on Medicare are covered by a $35 monthly cap on insulin, which took effect on Jan. 1 
• But many with private insurance still struggle to pay for insulin and other critical medications
• Nearly a third of adults in Michigan stopped taking medications as prescribed because of cost

Among some Michigan seniors, there was ample reason to celebrate the new year.

As of Jan. 1, Medicare put a $35-a-month cap on the cost of insulin — a boon to an estimated 122,000 diabetics in Michigan on Medicare, many of whom struggled to pay for a life-saving medication that can cost up to $2,000 a month.

But there’s a catch: The shift in Medicare coverage leaves out most of more than 900,000 diabetics in Michigan who don’t qualify for Medicare. For many of them, the cost of insulin and related medical expenses remain a financial challenge.

Related:

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• Medicaid review could drop 400,000 Michigan residents from coverage

And even for diabetics covered by the insulin price cap, the costs of other medications can be a gnawing source of anxiety.

Kent County resident Pam Bloink had been paying about $80 a month for two types of insulin she needs to keep her diabetes at bay. She’s grateful for the insulin cap she now gets through Medicare.

“Every little bit helps,” she told Bridge Michigan.

But Bloink takes nine other medications for a variety of ailments, including pills for high blood pressure, cholesterol, depression and heart issues. She spent more than $7,000 on medications last year — Medicare’s so-called “donut hole” of uncovered prescription costs once participants lose coverage for their drug expenses.

Bloink also picks up medical costs for her diabetic daughter, Amanda Beilfuss, which include another $80 a month for a glucose monitor. The strain can be overwhelming. 

“I have no savings,” Bloink said, “this house is falling down around my ears. We live month to month.”

Citing cases like Bloink’s, health analysts say the gap in coverage for insulin is just one part of the much broader challenge of high-priced medications.

“Prescription drug affordability continues to be a major hole in our health care system. Life-saving drugs are only lifesaving if people can afford them,” said Emma Golub, a policy analyst at the University of Michigan’s Center for Health and Research Transformation.

Nationally, AARP has estimated that 28 percent of U.S. adults 19 to 64 years old skip medications because of their costs. In Michigan, the problem appears worse, as AARP estimates 32 percent of Michigan adults — nearly 1 in 3 — forgo medications due to cost.

The drive to cap the cost of insulin — diabetes is the eighth-leading cause of death in Michigan —  has been underway for years, sparked by soaring prices over the past two decades. One type of insulin, Humalog, went from $21 a vial in 1999 to $332 a vial in 2019. U.S. insulin prices in 2020 were more than eight times as high as costs in 32 high-income nations, according to a RAND Corporation study.

In Canada, for instance, insulin is one-tenth the cost of what it is in the U.S., which is why diabetics have continued to cross the border at Detroit and other U.S. cities to buy supplies of a drug they can’t afford in the states.

Most people who take insulin are Type 1 diabetics, a chronic condition in which the pancreas makes little or no insulin, a hormone the body needs to allow sugar to enter cells to produce energy. Those with Type 2 diabetes, the more common form, can often control their blood sugar levels with healthy eating and exercise, though some also need insulin.

The outcry over rising drug prices in recent years hasn’t been confined to insulin. 

In 2015, then CEO of what was known as Turing Pharmaceuticals (and which in 2017 became Vyera Pharmaceuticals) Martin Shkreli stirred outrage when the firm jacked up the price of the  life-saving drug Daraprim that treats a rare parasitic disease that strikes those with compromised immune systems such as cancer and AIDS patients and pregnant women, from $13.50 to $750 a pill.

Shkreli, who was imprisoned in 2018 for securities fraud, was ordered in 2022 to repay $64.6 million in profits that he and his former company reaped from raising the price of the drug and barred for life from the pharmaceutical industry.

Pharmaceutical giant Mylan (now part of Viatris) faced similar pushback when it raised the cost of EpiPen, a self-injecting device for a drug that neutralizes a severe allergic reaction, from just over $100 in 2009 to $608.61 in 2016.

Responding to rising political pressures, Congress last August approved the $35 monthly cap for insulin for Medicare patients enrolled in its prescription drug plan known as Part D, as part of the $700 billion Inflation Reduction Act. But Senate Republicans blocked a provision that would have extended the price cap to diabetics on private insurance. Earlier this month, President Biden called on Congress to expand the $35-a-month insulin cap to all Americans. 

The law passed last summer, however, does include significant future restrictions on other prescription drug costs. 

Beginning in 2025, Medicare will set a $2,000 annual limit on out-of-pocket spending for all medications for Part D beneficiaries.

And in a notable policy change, the new law allows Medicare to negotiate prices on a growing number of drugs with pharmaceutical manufacturers beginning in 2026. It’s a move opposed by the pharmaceutical industry, which argues that price control measures will stifle innovation and curb development of new drugs.

“We have always assumed some form of price pressure is coming, including in the U.S.,” Merck & Co. CEO Robert Davis said in 2022 as Congress debated the Medicare drug measure.

“While I think we will manage it, I do worry about what it will do to innovation in the industry,” saying the plan would be “highly chilling.”

In the meantime, Michigan is undertaking its own steps to drive down the cost of insulin.

In October, Gov. Gretchen Whitmer issued an executive order focused on building an insulin manufacturing facility in the state for Michigan residents. She followed that by earmarking $150 million for its construction in her fiscal 2024 budget.

“I am calling for a bold investment to manufacture our own insulin and get it to people who need it to survive at an affordable price,” Whitmer said. 

State health insurers endorsed the plan, which is similar to a strategy in other states including California. 

“We applaud Gov. Whitmer’s recent executive directive that charts Michigan on a pioneering path to lower insulin prices in Michigan,” Dominic Pallone, executive director of the Michigan Association of Health Plans, said in a statement.

Health officials are also scrambling to assist patients who struggle to pay for  insulin, and a wide range of other medications.

Carrie Nelson, pharmacy director at Grace Health, a federally-funded community health center in Battle Creek, said the center works hard to ensure its low-income patients, some of whom are uninsured, get the medications they need. 

Nelson said even with its medication discounts for qualified patients, some may balk at paying $20 or $30 a month.

“Every day we have one or two patients where we have to reach out to one of our community partners for extra assistance. We have a relationship with the Salvation Army in Calhoun County for co-pay assistance.

“If somebody can’t afford their medication, we want them to take it, whether it’s a dollar co-pay or $50 co-pay.”

But for many diabetics, insulin’s cost may be the least of their expenses tied to the disease.

A 2020 analysis published in JAMA Internal Medicine concluded that people with Type 1 diabetes on private insurance had average out-of-pocket costs of $2,500 a year — and insulin was hardly the greatest expense.

Insulin accounted for just 18 percent of total out-of-pocket expenses related to diabetes, eclipsed by spending on diabetes-related supplies such as insulin pumps, syringes and glucose monitors.

“That is a bit shocking, right?” pediatrician Kao-Ping Chua, a researcher at Michigan Medicine's C.S. Mott Children's Hospital and the study’s lead author, told Bridge.

“But when we think of the affordability of healthcare, people with diabetes don’t just pay for insulin. Think about the supplies or the cost of an insulin pump or a continuous glucose monitor. The technology is quite expensive.”

He added: “The danger is that if you are solely focused on insulin, it doesn't help people with diabetes with their other expenses.”

That can lead some economically vulnerable patients to gamble with their health.

A 2022 medical survey found that 17 percent of adult U.S. diabetics — or about 1.3 million people — rationed insulin in the previous year. The percentage who rationed was even higher among those under age 65 — the age group not covered under the Medicare change, at 20 percent, and among Black adults, at 23 percent. Among uninsured adults, 29 percent rationed insulin, while 19 percent of people  with private insurance rationed insulin.

Failure to stay on regular doses of insulin can lead to persistently high blood sugar levels that can damage nerves, blood vessels, and lead to heart disease and kidney damage.

Donna Mimikos, a retired nurse and former patient care coordinator for Beaumont Health, now Corewell Health, and a Type 1 diabetic herself, for years saw first-hand the medical consequences when diabetics skipped doses. Some developed congestive heart failure or kidney failure or suffered loss of vision.

“If they had heating bills or grocery bills coming in, it was not unusual for them to decrease the dose to save the insulin,” she said.

“Diabetes can affect any organ in the body. If you don’t have controlled blood sugars, any number of chronic conditions can be exaggerated by uncontrolled diabetes.”

In her mobile home in Macomb County, Type 2 diabetic Rose Zook, 57, is fortunate to live for now without insulin. She has other worries.

Zook said she takes 18 medications for conditions that include arthritis, an immune system disorder, chronic depression, anxiety and obsessive compulsive disorder.

She recently qualified for Medicare, which is available to disabled people under age 65 who received federal disability payments for 24 months. She expects Medicare to pick up most of her medication costs.

But that still leaves her with a $300 bill every three months to have her medications delivered.

“I haven’t had a car since last May when the guy sold me a car with a cracked engine block,” she said.

“Honest to God, I don’t know how I am going to pay that $300. Right now, my bank account is negative. I paid at least $75 in overdraft fees the past couple weeks.

“I just have to have my medications, but I don’t know how I can afford it.”