Why the price of insulin is a danger to diabetics | Brooke Bennett

0:01This is TED Health. I'm Dr. Shoshana Ungerleider. On today's show, diabetes advocate Brooke Bennett shares her struggles with living with type 1 diabetes and calls for an affordable and humane livelihood for those with chronic illness. After the talk, join me for a journey down the winding pill trail from the moment your medication gets made to the moment you pay for it at your local pharmacy. We'll discover who gets to decide the cost of your drugs and explore what the government and some other companies are doing to disrupt the process and offer solutions for Americans right now. But who are these startups?

0:41And are they really the Robin Hoods Americans have been waiting for?

0:48It was October 6, 2012, and I would have killed for Wendy's Frosty. I'd been craving that frosty for about two days, but it always seemed just out of reach. See, after urgent care turned into tomorrow after school, which then became, we need to go back to urgent care now. And finally, in the car, on the way to the hospital, I realized that unfortunately, I would not be getting that frosty. because that frosty would have skyrocketed my blood sugar, signaling the beginning of a journey with an illness known as type 1 diabetes. The car seemed to hold an overwhelming silence that night, but the world outside was loud.

1:36Everyone outside seemed to be going on with their everyday lives, while my life seemed to be on pause as I tried to understand my new reality. I was hungry and upset and tired, and I made that well known by sprawling out in that back seat and whining just a little bit. I was only allowed one thing to eat. A green apple. Not a frosty. A green apple. But honestly, as much as I would have killed for that frosty, that frosty probably would have killed me. Now I'm sure you won't be shocked to find out that diabetes is expensive. There's my$5 ,000 insulin pump, the$250 a month for infusion sites for that insulin pump.

2:27And some insurances won't even cover the$1 ,500 every 90 days for a constant glucose monitoring system or CGM. On average, type 1 diabetics need 3 to 6 vials of insulin a month. Each one of those vials costs around$250. That's$750 to$1 ,500 a month for a drug that is vital for life. A drug that costs only$3.69 to$6.16 to produce. I'm fortunate enough to have insurance that covers most of these expenses, but I have a lingering fear that's shared by most young diabetics of turning 26, of aging off of my parents' insurance. I'm only 19, and yet my 26th birthday has been an ongoing conversation in my house.

3:24What are ways I can get insurance? How will I be able to afford my insulin? How can I keep myself alive? I experienced that delicate system in which diabetics operate on the night I dropped and shattered my last vial of insulin. It was a Sunday night and our usual pharmacy wasn't open. So my mom began the search for a 24-hour pharmacy near us while my dad attempted to get a hold of my doctor's office after hours in order to get my insulin prescription sent over to whatever pharmacy we were able to find. I was able to get enough insulin to last me to my next refill. My parents had the money to pay the$300 for that tiny vial.

4:14But the unlucky ones, the diabetics that can't pay, they have to worry about whether or not they will be able to afford their insulin every month. Sometimes they have to go without paying. Sometimes they have to go without their insulin. This is insulin rationing. It's exactly what it sounds like. It's skipping meals. It's skipping doses. It's taking less than you need or using a more unstable type of insulin just because it's cheaper. Between 2017 and 2019, 14 type 1 diabetics were identified as dying from diabetic ketoacidosis, a deadly complication of high blood sugar, also known as DKA, due to insulin rationing.

5:08I want to take a moment for them. Monique Moses. Shane Boyle Ontavia Wershman Jesse Lukin Alan Revis Micah Fisher Megan Carter Stephen Elford Kayla Davis Josh Wilkerson Jada Lewis Jess Amaya Scherer Jeremy Crawford and probably so many more but tonight I want to tell you the story of just one of them Alex Smith when he turned 26 he could no longer be covered by his parents insurance his job however didn't provide insurance he decided just to go uninsured. His insulin and supplies cost almost half of his salary, so he resorted to rationing his insulin. Less than one month after going off of his parents' insurance, Alec died from DKA.

6:32He instead paid for the price of insulin with his literal life. But odds are, you know about the price of insulin. Odds are, you know it is considered one of the most expensive liquids in the world. The price of insulin is something you can at the very least conceptualize. $1 ,000 a month's worth of insulin? That's a new phone. $5 ,000 every four years for an insulin pump? Those are some really nice vacations. These numbers, while large, aren't foreign. They're bad, but not completely abstract. On my arm is my CGM. It has saved my life more times than I can count. Knows my blood sugar every second of every day.

7:26It knows what I need even when I don't. It has the most obnoxious beeping noise. Think worse than a fire alarm. for when my blood sugar's low. And when that alarm goes off in the middle of the night, I would kill for it to have a snooze button. But it doesn't. So I drag myself out of bed, drink juice, and deal with that beeping until my blood sugar comes up. This device saves me because I can't detect the signs of low blood sugar, the shaking, the world feeling fuzzy, the feeling of a body that's no longer mine when I'm asleep. And if I were to drop too low, I'd seize and I'd die. Now, there's a more subtle notification for when my blood sugar is high, unobnoxious vibrating.

8:28But if I were to spike too high, it's DKA. And this device on my arm that's saving my life, it's considered a luxury. It's considered something that I could live without. To put my CGM on, I first clean and prep my skin. Then I stick an inserter to my skin and press a button that releases a needle. That needle punctures the skin and retracts, leaving a wire behind. Then I remove the inserter and click a transmitter in on top. It's a similar process for my pump. Clean, stick, stab. Two little puncture wounds, two little scars. My body is covered in those little scars. Each one representing the CGM or pump site that had been stuck to my body.

9:32each one representing the needle poke that went with it and the wire or cannula that needle left behind. Imagine years and years and years worth of scars in the anticipation of all of the years to come. Little pokes over and over and over again. now imagine those pokes don't go the way they're supposed to every time imagine you hit a vein and now blood is dripping down your leg or you hit a muscle and it burns the needle doesn't retract and get stuck the sticky doesn't stick now you have to do it all over again or the tubing gets caught on a door handle ripping itself out. Do it again. The CGM loses signal to it again.

10:32Even if those things don't happen, I still have to do it again. Every three days for my pump site and every 10 for my CGM. Somehow, I've managed to go nine years without any major incidents. But I know just how much I hate experiencing the highs and the lows. But I know that I am one miscalculation, one CGM or pump failure, one misstep, one mistake from paying the ultimate price. I've mentioned DKA a few times as a deadly consequence, but I want to walk you through what that looks like. You are literally dealing with blood that is toxic. Blood that feels like it's on fire. Blood that feels too heavy for your body.

11:28Your body is turning against you again. Then organs shut down one by one, usually the kidneys first, then the rest to follow. A domino effect in slow motion. If you were rationing insulin, maybe you could delay this. But you have one more thing to consider. If you take that insulin now, you won't have enough to take when you eat tomorrow. And that was the way Alex Smith died. And every other diabetic who's had to make that decision for themselves. Now, I have the privilege to pay most of these tangible prices, but I still experience the smaller prices every day. I've talked about some of those physical scars, but I want to talk about the ones that aren't visible.

12:33Imagine running out of class, missing part of a lecture to grab a juice from the fridge, missing out on high-carb meals because I just know that I'll mess with my blood sugar, delaying a workout because my blood sugar's not in range. Even worse, stopping in the middle. Being in the heat skyrockets my blood sugar and swimming drops it. Being sick makes it do weird things, and any medication they put me on when I'm sick only makes it worse. I'm spending so much mental energy doing math, calculating every second of every day from the literal prices to the prices that I pay because I miss moments, so many moments.

13:14Look, standing here and trying to describe these parts of my life is hard. I experience these things on a daily basis and yet I can't seem to find the right words to try and describe to all of you what it's like. The words I do seem to find don't fully depict the gravity of these situations, what it feels like to be in them. Situations that I got one singular day of education for. One day to account for a lifetime of managing a chronic illness. Now I can tell you the exact cost of that frosty. 99 cents. 54 grams of carbohydrates 9 units of insulin and a heck of a headache when my blood sugar spikes it was a price I didn't understand 10 years ago it was so much more than I could have ever guessed but now I know that every time I eat food I am paying both the literal and metaphorical prices of insulin it was a price I was willing to pay 9 years ago but now I get it so much more intimately than I did the first time.

14:27And some of these prices, like the financial ones, are ones we shouldn't have to pay because we pay enough prices already. Exactly 100 years ago, insulin was tested on a human for the first time. And type 1 diabetes went from being a death sentence to treatable. We took giant steps forward in improving the quality of life with diabetes. And yet, diabetics are still losing their lives to the astronomical cost of something that we can't live without. The idea of affordable insulin isn't revolutionary. It's 100 years old. Every day, myself and millions of diabetics experience the roller coaster that is type 1 diabetes.

15:23we worry enough about keeping ourselves alive we shouldn't have to worry about whether or not we can afford our insulin because I want to eat that frosty and have to worry about only one price that headache that's sometimes worth it thank you

15:53Hey, listeners, it's Dr. Shoshana again. It's no secret that the price of prescription medications in the U.S. are up to four times the price in peer nations like Germany and Canada. And costs are on the rise. As of 2020, Americans paid an average price of about$1 ,300 per person per year for prescriptions, more than any other country in the world. As a result, the crippling costs of prescriptions have forced some Americans to make a tough choice. Sink into debt, skip meals, or stop taking their life-saving medication altogether. Even as a doctor, I've wondered why prescription medications cost so much in this country.

16:38Given the excessive costs and the life and death implications, it seems like more transparency around this issue could benefit everyone. So I decided to find out by doing a little digging. To understand prescription costs, we have to follow the pill trail from the manufacturer to your medicine cabinet. Every step of the process is manipulated by a key player. Let me talk you through each step. I'll start at the beginning. Pharmaceutical manufacturers have total freedom to price their drugs. This manufacturer price is called the wholesale acquisition price, or the sticker price of the drug. But companies like Pfizer or Johnson & Johnson, for example, rarely get their sticker price.

17:24That's because distributors use rebates and negotiations that take place behind closed doors to get a lower one. So pricing transparency is lost early on. And this is just the first of many negotiations that influence price. The range of drug prices grows wider and wider at each step. Next, pharmacies negotiate prices with distributors. And no two pharmacies negotiate the same buying price. This is why, if you've ever swapped pharmacies, you'll find completely different costs between them, even if they're located on the exact same street. But it's not time to walk away with your medications just yet.

18:04When a pharmacy sends the drug bill to your insurance company, the insurance company doesn't negotiate directly with the pharmacy. Instead, it goes through a prescription benefit manager. PBMs are third-party organizations that manage prescription drug benefits for insurers. They play a major behind-the-scenes role in deciding which drugs you get and how much they cost. And PBMs don't always act in the consumer's best interest. That's because they make money based on rebates they negotiate from drug manufacturers. And often they get the biggest rebates for the priciest drugs. Even with those big discounts, brand name drugs still end up being more expensive than cheaper generic drugs.

18:53And the burden of that cost typically falls on you. And without much transparency on how you ended up with the bill you got. Since these decisions impact so many people, you might wonder why the government isn't stepping in to make prices more approachable and reliable. Well, they are and they aren't. Unlike some European governments that negotiate costs directly with drug makers, the U.S. hasn't regulated the cost of prescription medications. However, in more recent years, legislation has made some attempts to help. In August, President Biden signed into law the Inflation Reduction Act of 2022.

19:36Starting in January of 2023, Medicare patients will benefit from a$35 cap on a month's supply of insulin. The act also requires the federal government to negotiate prices for some drugs covered under Medicare Part B and Part D beginning in 2026. Not surprisingly, drug manufacturers have opposed proposals to lower costs. They argue that maintaining high ticket prices are necessary to fund the development of cutting-edge medications. But one recent study found that the average research and development cost for a new drug was over a billion dollars lower than what the pharmaceutical industry claims.

20:15So innovation costs may not be enough to justify such high prices. In the meantime, innovative startups offer a glimmer of hope for consumers. GoodRx allows people to compare drug prices from different pharmacies and offers free coupons that can save patients up to 80 % off the list price of medications. This platform has become a staple for people without insurance, and it's also available for people with it. However, if you use a GoodRx coupon instead of your insurance, the amount paid for your medication won't automatically be applied to your deductible. Other companies are stepping in to offer similar savings.

20:54Earlier this year, billionaire Mark Cuban, the co-host of Shark Tank, launched Cost Plus Drugs. This company allows people to buy generic prescriptions with transparent pricing. Cuban says every product is priced the same way. His cost, plus 15%, plus the pharmacy fee, if any, and a$5 shipping fee. That savings and cost might mean saving lives. Imatinib, a leukemia therapy drug with a retail price of more than$2 ,500, is just$14.40 at Cost Plus Drugs. And that price is offered to everyone, with or without insurance. Companies like GoodRx and Cost Plus Drugs aren't solving the underlying issues driving prescription costs.

21:42But with the cost of everything on the rise right now, companies like this offer a much-needed sigh of relief. And as a physician, I'm grateful that smart, innovative entrepreneurs are coming up with solutions that are making a difference for my patients, regardless if they're fixing the underlying problems of our fragmented healthcare system or just finding a way around them.

22:08Thanks so much for listening today. This episode was produced by Joanne DeLuna and fact-checked by Ted. And special thanks to Anna Phelan, Maria Lajas, Michelle Quint, Grace Rubenstein, and Colin Helms. I'm Dr. Shoshana Ungerleiter. Stay well, and I'll talk to you next week.