Congress tries to cap insulin costs as diabetics ration supplies

There is another proposal that could make it into the Senate budget deal that would cap the cost of insulin. More than 7 million Americans with diabetes use insulin and about 1 million put an enormous amount of their paycheck toward that medication. We spoke to some of those who are affected by this crucial medicine's high prices and how a legislative proposal could impact their lives.

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  • Lisa Desjardins:

    Kimberly Cavanaugh takes pains to eat healthily, carefully planning, prepping, and cooking three meals a day. The key? Keeping her blood sugar in check. That starts with a dose of calculation and a shot of insulin.

  • Kimberly Cavanaugh, Diabetes Patient:

    I can always tell when my blood sugar is low or high without even testing it. My eyesight gets a little blurry or I'm sweating.

    What I usually use is everything in here.

  • Lisa Desjardins:

    The Virginia resident is alive and stays alive because of insulin. In her early 20s, Kimberly slipped just briefly in monitoring her blood sugar and missed that it was spiking.

  • Kimberly Cavanaugh:

    I definitely could have died from it. Your blood sugar gets so high that the sugar turns into acid in your blood, and it can be fatal. So I actually was in a diabetic coma for three days. It was very scary. And that was just from not taking insulin for maybe two days.

  • Lisa Desjardins:

    In the past, she's rationed her doses because she couldn't afford a full supply. The result? Kidney and vision issues.

  • Kimberly Cavanaugh:

    I have had a lot of laser surgeries.

  • Lisa Desjardins:

    A 2018 survey found that a quarter of diabetics in America rationed their insulin. Meantime, black markets and insulin exchanges have become commonplace in some areas and online. Kimberly is well covered now, but, even so, the costs are daunting.

  • Kimberly Cavanaugh:

    Even with insurance, it's still costing me about $120 a month just for the insulin. That's not needles or test strips, going to the doctor. I go every three months. It's a lot. It's a lot of maintenance, but it's prolonging my life, so it's necessary.

  • Lisa Desjardins:

    More than 37 million Americans live with diabetes. That includes an astounding one in three seniors. Some seven million Americans depend on insulin.

    Untreated, diabetes is a monster disease, causing nerve damage, heart disease, stroke, loss of limbs, and it is a leading cause of death in America. Despite such need and 100 years of existence, insulin list prices soared last decade.

    The idea of capping insulin costs is popular with voters, but it has taken years to get this far, now on the table as part of Senate Democrats' proposed climate and health care bill.

    Why is it so hard to get what seem on the surface to be very popular health care policies passed through Congress?

  • Andrew Mulcahy, RAND Corporation:

    The complexity of all of these systems. And it is really, truly complex, how there are different stakeholders.

    I do this for a living, and I'm confused all the time.

  • Lisa Desjardins:

    Andrew Mulcahy is a health care economist with the RAND Corporation.

  • Andrew Mulcahy:

    So, there's really a lot of variation and a lot of unknowns in our U.S. health care system, and that makes it hard for anyone considering a policy alternative to know how it's going to play out in real time.

  • Lisa Desjardins:

    Just look at the insulin system. Pharmaceutical companies set one price, a list price. That doubled between 2012 and 2017, according to the Health Care Cost Institute. It has decreased slightly in the past two years.

    Next, though, an unusual industry, pharmaceutical benefit managers. Those are go-betweens who negotiate a different and lower price for health insurers. How much exactly is often secret, as is their cut, which critics say is now a big part of the problem. All of this leads to a host of prices at the pharmacy. And it depends on how and if you are insured.

    Overall, in the U.S. what patients pay for insulin is:

  • Andrew Mulcahy:

    Seven times plus higher than those in other countries. So, that's an enormous difference.

  • Lisa Desjardins:

    Senate Democrats' plan would add incentives to boost competition and a $35 cap on out-of-pocket costs for a 30-day supply, cutting costs for about a quarter of patients with insurance, but giving no help to those without.

  • Mila Clarke, The Hangry Woman:

    Insulin for me is like air to anyone else. I use insulin around six to seven times a day, just depending on the day.

  • Lisa Desjardins:

    Thirty-two-year-old Mila Clarke turned her diabetic coping mechanism into a business.

  • Mila Clarke:

    This looks great.

  • Lisa Desjardins:

    As The Hangry Woman, her videos spoon out recipes and pinches of get-real advice for tasty, healthy food, and navigating the medical system.

  • Mila Clarke:

    Through all of my videos, I try and answer questions that I know that I have had about diabetes management, but that I also know that people struggle with.

    And so we have got a bunch of good stuff here.

  • Lisa Desjardins:

    She fears there's an element too few understand, disparity in the system for the uninsured and people like her.

  • Mila Clarke:

    I think, in general, patients of color, and specifically Black patients and Black women, we have kind of seen that stories about how hard it is to get listened to in the health care system. It took me four years to really convince doctors that I was doing the things that they told me to do and that it just wasn't working.

  • Lisa Desjardins:

    Black and Hispanic adults are 60 percent to 70 percent more likely to have diabetes than their white peers, and even more likely to suffer consequences.

    Dr. Joshua Joseph is an endocrinologist at Ohio State University Wexner Medical Center.

  • Dr. Joshua Joseph, Ohio State University Wexner Medical Center:

    When we think about the impact of diabetes and the higher prevalence of diabetes in minoritized populations here in the United States, it really — you have to think upstream, and is really due to the structural inequities that we see in the United States and comes down to the social determinants of health.

  • Lisa Desjardins:

    For diabetics, health and life depend on stability.

    So, to Kimberly Cavanaugh, a price cap on insulin is a start.

  • Kimberly Cavanaugh:

    We're talking about $35, period, end of sentence, like, I could not be more grateful for that. But if it's just for someone who's insured, I don't think that's good enough.

  • Lisa Desjardins:

    There are more people like Kimberly and Mila diagnosed with diabetes everyday. Grateful for any action, they also say Washington needs to prep many more ingredients to tackle not just the cost of insulin, but the crisis underneath.

    For the "PBS NewsHour," I'm Lisa Desjardins.

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