My name is Denise and I’m from Ludington, Michigan. I was diagnosed with type 2 diabetes in 1995, and ever since I’ve been trying to figure out how to pay for all the medications I have to use to control the condition.
The first medication I tried was metformin, but in 2010, my blood sugar levels got to a point where I had to switch to Lantus. Though Lantus was working well for me, it wasn’t covered under my Medicare plan, so I was put on Novolin and an oral gliclazide.
A few years ago, my doctor wanted me to try Trulicity. It was incredible for my health — my blood sugar levels were always stable and within normal range. I could get up and do the things I wanted, and eating something sweet wouldn’t result in a spike.
However, Trulicity was more than I could afford. A month’s supply cost around $250, and it eventually threw me into the Medicare donut hole. I began relying on the Trulicity samples that the manufacturer sent to my doctor. But since the COVID-19 pandemic, there have been far fewer shipments of samples, and I haven’t been able to access Trulicity for months now.
Coming off of Trulicity has been so difficult — I gained 25 pounds in one month and felt hungry all the time. I’m back on Novolin and am still taking the gliclazide. While it costs just $50 a month now, it’s much harder to manage my diabetes. I struggle with my diet and the fluctuations in my blood sugar levels. It feels like my diabetic neuropathy has gotten worse — my legs and feet feel numb more often, and I’ve lost my balance and fallen a few times.
I get depressed because I can’t do the things I used to, and my life a year ago when I was taking Trulicity is so different from my life today. It’s hard to keep up with my grandkids because I can’t feel my feet, and the numbness in my body affects everything. I used to be very active and loved dancing and swimming, but now I can barely go up and down the stairs. When I go to the bathroom, I have to make sure my feet are planted before I take a step and map out everything I can hang onto.
If it weren’t for the cost, I would switch back to Trulicity in a heartbeat. But it’s hard to justify paying so much for one drug when my husband and I have to think about all the other medications we need as well, including those for high blood pressure, high cholesterol, restless leg syndrome, and seizure prevention.
I was a nurse for decades before retirement, and now I can’t access the drugs that I used to help provide for my patients. A few times, my husband and I couldn’t afford our groceries, and we had to go to the food bank in order to pay for our medications.
It’s hard to believe that with all of the advances in medicine, I still have to think about what I can and can’t afford instead of taking what works best. It seems like these medical advances are really for just the few — and Washington isn’t doing anything to help people like me.
My name is Lija Greenseid, and I’m one of the thousands of parents whose children live with type 1 diabetes in the United States. When my daughter was first diagnosed, I was shocked –– first by the diagnosis itself and then by the economic cost that came with it. My daughter takes insulin, a drug that has increased by over 1000% in price over the past decade. We hit our insurance out-of-pocket limit for the year with just the first visit to the pharmacy to pick up my daughter’s diabetes medications and supplies.
A few years after my daughter was diagnosed, I heard Nicole Smith-Holt talk about losing her son, Alec, after he rationed his insulin because of the price. I knew then that I needed to get involved. Nicole’s story was similar to other people’s stories, and I worried it could be mine too if someday my daughter couldn’t afford or access her insulin.
Four years ago, my family and I traveled around the world and bought insulin at one-tenth or less the price we paid at home. I grew frustrated thinking of all the families like mine who were paying unreasonably high prices for our insulin, and especially of the families like Nicole’s who had lost loved ones because of the price gouging on insulin. The United States is unique, in a bad way, in how expensive insulin is here. Other countries pay a fraction of what we pay for our insulin. I started sharing my story and took an active role in the fight for affordable insulin.
Though I work part-time as a program evaluator, I began spending more and more of my time advocating for affordable drugs and health care changes. Living in Minnesota, just five hours from Canada, I and several other people with diabetes organized a cross-border trip to raise awareness of the unaffordability of insulin and to purchase the drug at one-tenth of the US price. There have been multiple of these “Caravans to Canada” trips and they have gained national media attention, pressuring elected officials and drug companies to acknowledge the unreasonable price gouging on insulin. Additionally, it brought attention to the thousands of people every year who travel to other countries just to afford their life-saving medications.
When it comes to cheaper insulin prices, Canada isn’t an outlier. Their prices could be our prices here in the United States. If our lawmakers allowed Medicare to negotiate with drug manufacturers as the Canadian public insurance does, the price would decrease significantly. We need lawmakers with the courage to prioritize patients and work to decrease the cost of prescription drugs like insulin.
Because of our advocacy in Minnesota, some insurers in our state have capped their prices, allowing some people to only pay $25-30 a month for insulin. Additionally, we passed the Alec Smith Insulin Affordability Act which provides a safety net for Minnesotans who can’t afford their insulin. But this is not enough. Insulin is just one drug. We need solutions both at the state and national levels to address the system-wide greed of drug companies. Drug companies continue to charge ridiculous prices, further exacerbating already existing racial and economic inequities in our health care and prescription drug systems. High prices disproportionately affect black and brown communities, the same people hit hardest by the COVID-19 pandemic. In such a critical moment in our country, I’m inspired to refocus my activism and continue advocating for a more just system.
My name is Nancy Geiler and I am a long-time resident of Lemay, MO. My husband, Dan, and I have celebrated many healthy and happy years with our two sons and five grandchildren –– two boys and three girls. We hope to celebrate many more birthdays and holidays, but we are worried about our future due to the ever-increasing costs of our insulin.
We both have type 2 diabetes and are insulin-dependent. Dan was diagnosed 30 years ago, and I was diagnosed 10 years ago. These diagnoses have made our lives unrecognizable. Dan isn’t able to do woodworking as a hobby anymore because of his neuropathy. We have also had to worry about the constantly increasing price of our life-saving insulin. In January of 2018, we went to get our Novolog and Humalog filled and the bill was $1,800. We simply couldn’t afford it.
At this point, Dan decided he would just not take his needed insulin. No one should ever have to consider this. Dan managed to find an alternative for one of his insulins at Walmart for $60, but it’s an older version of the drug, and it’s not as safe.
I tried contacting Eli Lilly, but because we have Medicare, they wouldn’t assist us. Insurance wouldn’t cover our Lantus either, so we were forced to find an alternative. But when our doctor prescribed an alternative, we found out we wouldn’t be able to afford that insulin either.
We have also fallen into the donut hole, the nickname for the coverage gap in Medicare where patients pay a large share of their drug costs. At that time, we were spending around $400 on his and $150 on my medications.
It is now 2020 and things haven’t gotten easier. Dan is on dialysis and he has a new diabetes doctor who wants him to take Toujeo. When I went to pick it up, I found out it would be $700 for one month. We couldn’t afford it, so we were told to get Walmart insulin temporarily. Our doctor was able to get us approved for help. We have to reapply every year, so we fear for the day that we don’t get approved and have to put Toujeo on a credit card. We still get Novolin R for $25 each vial, adding up to $100 for his needed 4 vials. All of these costs add up. I don’t know a single senior who could afford it.
We worry for our future because we have been first-hand witnesses to skyrocketing insulin costs. We want to be able to enjoy our retirement and be able to be there for our children and grandchildren.
My name is David Undlin and I am a longtime resident of the Saint Paul, Minnesota area. Before I retired, I worked as a pharmaceutical sales rep for 20 years. I was happy to be able to contribute to society by selling medications that would be helpful to people. Unfortunately, times have changed since then, and it’s happened at the expense of patients like you and me.
I recently had a pulmonary embolism that caused a bit of lung damage, and so I was prescribed blood thinners by my doctor to prevent another blood clot from forming in the future. But when I went to fill my prescription, I was stunned at the cost.
Both Xarelto and Eliquis cost me around $300 for a three-month supply. That may not seem like a lot to some, but I am retired and living on a fixed income. I have to skimp on my medications or give up other necessities in order to be able to afford them.
These medications are necessary to protect my good health. I urge my lawmakers to listen to patients and work to lower drug prices for all those in this country.
In 2018, I was Ramae Harmin –– a 47-year-old single mother, long distance runner, and high school math teacher. Then I was diagnosed with an incurable blood cancer called multiple myeloma. Now, for the rest of my life, I will be a cancer patient.
I took a leave of absence from my job as a teacher to undergo several surgeries, radiation, an induction chemotherapy regimen, and a stem cell transplant. My slow recovery from the transplant coupled with the intense fatigue from my daily maintenance regimen has prevented me from returning to work. I have just enough energy to take care of myself and my son.
I also have just enough money to live. For now, I receive long-term disability from my former employer and from SSDI. I am currently still on my private insurance plan through Cobra, but I will make the switch to Medicare at the end of the year. My only income is 60% of my former teaching salary and some child support that will end when my son turns 18. I also have two college-aged daughters that I help to support as well.
Other than a high yearly deductible and the monthly Cobra premiums, I have paid very little out-of-pocket for my medical treatments and medications. My maintenance drug, Revlimid, is not fully covered by my insurance plan, but I do qualify for $25 copays through my drugmaker’s assistance program. The drug maker charges my insurer between $15,000 and $25,000. My assistance will evaporate once I start on Medicare. I’m terrified.
Myeloma patients on Medicare are paying as much as $3,000 out-of-pocket per month for Revlimid and other drugs. There are grants available for some, but not all qualify. I don’t know if I will qualify or if the grant money will be there when I need it. What I do know is that I won’t be able to afford this monthly cost without selling my home and using every penny I’ve managed to save –– and even that will only last so long.
My wife Carol and I are longtime residents of Juneau, Alaska. We were born and raised on the East Coast, but we made Alaska our home after Carol moved out here to marry me. She has always been my teammate, and we have faced a great deal of hardship together.
Unfortunately, the latest hardship we’re facing is the cost of our diabetes medications. We were disheartened to find that the vials of Novolin N and Novolin R we need would cost us anywhere from $130 to $600 per month. Doctors wanted to put me on a new medication for my diabetes, and I was told it would be $2,147 for a month’s supply. I didn’t even bother to ask the doctor for the drug name; I just knew I couldn’t afford it. We have to look for coupons and discount cards in hopes that they will lower our out-of-pocket costs, but we are never certain what each month’s payment will look like.
We spend more on meds than we do on food –– and that is without buying pricey diabetes supplies. We have to get our food from food banks. The food we get isn’t always healthy, but with the cost of our prescriptions, we have to take what we can get.
When my wife and I were first diagnosed, it didn’t cost us more than $150 a month to get everything we needed to treat our diabetes. Since our diagnoses in the 1990s, the cost of our medications have nearly tripled. I just turned 70 and Carol is 64. We wish I could be enjoying retirement, but we both still work every day in our community as school bus drivers and doing our best to help the children in our neighborhood. If our medication was more affordable, our lives would change completely. There is no reason people should be getting priced out of their insulin. We are sharing our story to fight not only for ourselves, but for others as well.
My name is Patricia McKenzie and I am from Lithonia, Georgia. I love to read, go to the movies, go to church, and work in the community with my sorority, Sigma Gamma Rho. I also live with high blood pressure as well as insulin-dependent diabetes.
I am on Medicare and live off a fixed income. I am very money conscious, because I need to stretch out my budget in order to afford my medications, housing, food, and other necessities. Before I was eligible for Medicare, my insulin would have cost me $1,200 every 3 months. When I found out, I was stunned. I could not afford that.
I worked as a public health nurse for the local health department and knew many seniors who couldn’t afford their medications. At the time, I had no idea I would eventually end up in their situation –– risking my health by buying an alternative insulin rather than the one my doctor prescribed me.
Fortunately, now that I am on Medicare, I am able to afford the copays for my insulin. However, I worry with the prices continuing to rise that I will be forced, again, to make the tough decision to go on the less safe insulin. Seniors like me should not have to decide between eating and taking their drugs.
My name is Barbara Bultman, and I am a resident of Faribault, Minnesota. I’ve got a big family –– 8 kids, 19 grandchildren, and 8 great grandchildren. When I’m not with my family, I love to spend time with my longtime group of girl friends.
I have issues with my lungs, so my doctor wrote me a prescription for multiple inhalers. I never expected to have to worry about the cost of medicine, but it’s now something that is constantly on my mind. Trelegy Ellipta is an inhaler that has worked wonders on my breathing –– but it costs $353 out of pocket. I couldn’t afford that, so I had to borrow money from people to get the inhaler I need to breathe. The Augmentin I take on top of my inhalers is also expensive.
I ration my inhaler and it affects my health and my lungs. I know there are so many others going through this. I get scared and it causes stress, which only worsens my health. I worked in manual labor all my life, and it has taken its toll on my body. I’ve been left with osteoarthritis and scoliosis.
Life is hard when you’re sick and aging. I hope every day that I will receive help and be able to afford my medication.