Every day, I watch my teenage son, Chris, manage his diabetes.

He has to prick his finger four to five times a day to check his blood sugar level and inject insulin at every meal and bedtime. Too much insulin can lead to dangerous lows; too little insulin can lead to dangerous highs, and long-term health complications.

While managing diabetes is not easy, insulin treatments have improved dramatically in recent years, helping people like my son maintain stable blood-sugar levels better than ever.

But these innovations aren’t meaningful if people can’t afford them.

This is a deeply personal issue in my home, just as it is with families here and across the country. That’s why the ongoing conversation in Minnesota about patients’ difficulty affording their insulin and what lawmakers can do to help is so important.

Given the complexity of a chronic disease like diabetes and the day-to-day challenges of managing it, patients shouldn’t have to worry about affording insulin. Yet far too many patients do.

We in the biopharmaceutical industry believe it’s our responsibility not just to make great medicines, but to make sure people can afford them. We believe there are concrete steps that policymakers and the industry can take.

First, biopharmaceutical companies that research and develop insulin offer patient assistance programs to help with the costs of insulin and other diabetes medicines.

For patients struggling to afford their insulin treatments now, our companies have robust programs, like Eli Lilly and Company’s Lilly Diabetes Solution Center, Novo Nordisk Inc., and Sanofi’s Insulins VALyou Savings Program. Tens of thousands of patients have been able to find help affording their insulin every month by utilizing these programs.

Furthermore, PhRMA recently launched the Medicine Assistance Tool (MAT) to provide patients more information about their medicine costs and help patients, caregivers and health care providers learn more about the resources available through biopharmaceutical industry programs.

This year, lawmakers in St. Paul considered creating a state-run insulin assistance program that would have largely duplicated existing programs, which are already available to help people today.

We think the focus should instead be on policies that can fix the health care system so it works better for patients.

Right now, patients’ out-of-pocket costs for their medicine continue to increase despite growing discounts and rebates paid to insurers and other middlemen like pharmacy benefit managers (PBMs).

Those discounts aren’t always directly shared with patients at the pharmacy counter, which means patients can actually pay more for their medicine than their insurer pays.

For insulin specifically, these negotiations can lower the net price of insulin by 70% or more. Despite this, patients’ costs continue to go up.

That’s not right and it needs to change.

We believe the pharmaceutical supply chain needs to change so that more of the $166 billion in negotiated rebates and discounts are used to lower costs for patients at the pharmacy counter.

We urge Minnesota to require state-regulated health insurers to pass rebates and discounts to patients at the pharmacy, instead of calculating a patient’s cost sharing based on a list price that is much higher than what the insurance company pays for the medicine. We support a similar change to the Medicare prescription drug program.

We also think insurance should work like insurance again.

Right now, if a patient has a high-deductible health insurance plan, she must front the cost of her medicines out of pocket until she reaches her deductible, which could be thousands of dollars.

The Department of Treasury/Internal Revenue Service can make changes that would instead give patients in these plans coverage for their insulin and other medicines before they go through the expense of meeting their deductible. Lawmakers could also push for a set copay amount for insulin for patients receiving subsidies in Minnesota’s health care exchange, MNsure, instead of subjecting them to a deductible.

These changes would result in patients having more predictability and the cost of their insulin covered on day one of their insurance coverage, instead of having to reach their deductibles before any coverage of their medicine kicks in.

Health insurance companies aren’t currently required to count the cost of medicines purchased through third-party programs, like Blink Health and GoodRx, toward the maximum amount patients’ have to pay out of pocket for their health services every year. They should be.

These are real solutions that will help patients afford their insulin. We want to work with lawmakers and other stakeholders to make these changes a reality.

 

Stephen J. Ubl (@steveubl) is a Minnesota native and president and CEO of the Pharmaceutical Research and Manufacturers of America (@PhRMA).