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 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.
(SPANISH BELOW)
My name is Maria Sanchez, and I am a longtime resident of Atlanta, Georgia. I do my best to manage a number of medical conditions, including diabetes. My illnesses are stressful to me because of the havoc they wreak on my body and on my bank account.
I remember my mother always telling me she didn’t have any money in retirement, and I didn’t understand why until now. Now that I am retired and on a fixed income, I see how medical costs can add up. My insulin is constantly rising in price.
In the last six months alone, my Metformin went from $10 to $50. That is a huge and unexpected change to my budget. My Toujeo, a long-acting insulin that I need, has also increased in cost. In order to buy all of my medications, it usually costs me between$120 and $160 per month. In order to be able to pay for all of my medication I often skip out on buying my diabetic test strips. I only check my blood sugar in the morning, which can be very dangerous to my health — but it’s the only choice I have.
I have decided to share my story because I know that I’m not alone. There are countless other Georgians who are dealing with the same hardship I am enduring. My prescription costs may not seem like a lot to some, but I could use that $150 to buy healthier food for my family or visit my grandchildren more often. Instead, I constantly worry for my health.
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Mi nombre es Maria Sánchez y resido desde hace mucho tiempo en Atlanta, Georgia. Hago lo mejor que puedo para controlar una serie de condiciones médicas, incluyendo la diabetes. Mis enfermedades son muy estresantes para mi por los estragos que causan en mi cuerpo y en mi cuenta bancaria.
Recuerdo que mi madre siempre me decía que no tenía dinero en la jubilación y no entendía por qué hasta ahora. Ahora que estoy jubilada y con un ingreso fijo, veo cómo pueden sumarse los costos médicos. El precio de mi insulina aumenta constantemente.
Solo en los últimos seis meses, mi metformina pasó de $10 a $50. Eso es un gran cambio enorme e inesperado en mi presupuesto. Mi Toujeo, una insulina de acción prolongada que necesito, también ha aumentado de precio. Para poder comprar todos mis medicamentos, por lo general me cuesta entre $120 y $160 por mes. Para poder pagar todos mis medicamentos, frecuentemente dejo de comprar mis tiras reactivas para diabéticos. Solo me reviso mi nivel de azúcar en la sangre por la mañana por lo cual puede ser muy peligroso para mi salud, pero es la única opción que tengo.
He decidido compartir mi historia porque sé que no estoy sola. Hay muchos más Georgianos que se enfrentan a las mismas dificultades que yo estoy soportando. Los costos de mis medicamentos recetados tal vez no parecen mucho para algunos, pero pudiera usar esos $150 para comprar alimentos más saludables para mi familia o visitar a mis nietos con más frecuencia. En cambio, me preocupo constantemente por mi salud.
My name is Travis Paulson and I am from Eveleth, Minnesota.
I have been a Type 1 diabetic for many years, but affording insulin wasn’t that difficult as a child –– it was about $8 a vial. The problems came when I was in my late twenties and early thirties. I was working in finance full time and going to college full time, and my insurance had a deductible of $7,500. Insulin at the time ranged from $300 – $350 a vial, and I was requiring about 5 vials a month.
There were times I couldn’t scrape together $5.00 and was just plain poor due to these costs. On several occasions I starved myself and took less insulin than I was supposed to so my vial would last longer. Unfortunately, even doing that I would run out of insulin. I wasn’t involved in diabetes groups and knew no other diabetics. I don’t even think there was a name for rationing insulin at the time. I thought I was in a unique situation, so I didn’t reach out for help.
I would stay in bed sick and call into work sick until my paycheck cleared the bank. I’d then force myself up and get to a pharmacy and get insulin. It’s really hard to move when your blood sugar is that high. I remember feeling like I wasn’t going to make it, but somehow I did. 10-15 years ago I had never heard of anybody dying from rationing insulin, so I figured that while it wasn’t a good thing, it wouldn’t go so far as to kill me. I’ve learned since that I was just very lucky at the time –– I easily could have died.
It was during the financial crisis of 2007-2008 that I was forced to ration insulin again. Times were tough for lots of people. I remember camps of ex-financial services workers living in tents. But aside from just finding housing during the financial crisis, I had an additional problem. I had to afford my insulin. I traveled around the country working odd jobs to afford insulin and rationed what I had, living a meager existence and working warehouse jobs wherever I could.
It was after I came back home to Minnesota to get back on my feet that I decided I would no longer tolerate the abuse and hold on my life Big Pharma had. I realized I could get insulin from Canada for less than a tenth the price I was paying in the US. From then on I have been getting my insulin in Canada and helping others do the same.
The unfortunate thing is that all those years of rationing insulin have caused diabetes retinopathy, insulin resistance, and long-term complications that never would have occurred if I had access to affordable insulin. My health is what paid the price.
My name is Kara Campuzano and I am a resident of Salem, Oregon. I have spent my life in various different roles: student, career woman, and even USOA Mrs. Oregon 2020. But my most important role has been as a mother and a carer.
My son Brody was diagnosed with Type 1 diabetes at 5 years old. He’s now 10. We were on the Oregon Health Plan at the time, so we didn’t have to worry too much about the cost. However, as my spouse and I began to see greater success in our career, we also began to earn more money, meaning we no longer qualified for the public health plan. That is when our costs for Type 1 diabetes care really started to go up.
Thankfully, our son’s Humalog is $35 per month on our private corporate insurance. However, that is only if it’s on prescription and not if we need an emergency dose.
One day, I received a phone call saying my son left his Humalog insulin at school. It was almost 5:00 pm and the school was closed.
I immediately panicked. Brody needs his insulin, so I called our local pharmacy to try to get the dose we needed to get through the evening. I was shocked to find out that it would cost more than $300 for me to go to pick up the emergency dose. I immediately started worrying about how I would pay for it. Would I need to pay on a credit card, or get the insulin at an ER?
No mother should have to worry about paying for their child’s necessary medication. There should be better options in place for families like mine. Insulin has been around for too long to be priced that high.
I am lucky to have a relatively small co-pay, but I know that there are countless others who struggle to pay even a $35 copay. And I know I’m not the only one who would struggle to shell out more than $300 for an emergency dose. Oregonians deserve better.
My wife, Patty, passed away from complications from insulin rationing on November 24th, 2019.
When my late wife and I were on private insurance, we were able to easily afford her insulin with low copays. When we switched from private insurance to Medicare, Patty’s insulin was priced at $700 per month, while we were only bringing in $1,500 per month in income. Simply put, we could not afford afford this lifesaving drug for my wife.
Patty’s doctors did their best to provide us with all of the samples they could to help alleviate the cost, and we looked into copay cards and assistance programs, but we didn’t qualify for any of them because of our coverage. Patty was forced to ration her insulin intake. Due to the rationing, Patty’s blood sugars would fluctuate in a life-threatening way. There were multiple times when her blood sugar reached dangerously high levels and we were forced to take her to the emergency room.
I took out a loan in order to pay for Patty’s insulin, but by the time the insulin was in our possession, it was too late. Patty’s liver had suffered so much damage from the rationing that she needed a replacement. There were no replacements available.
My wife of 44 years and the mother of my child passed away on November 24th, 2019. If her drugs were more affordable, she would still be with us today. I wanted to share Patty’s story so that no one else has to go through what my family and I have had to go through. It is time for there to be real change on drug pricing policy.
My name is Edward Hawley. I am 64 years old and am very active in my Portland community. But I live on a fixed income, and I know that there are many others in my position who are facing health care difficulties just like I am. I even moved to Portland to care for my sick and dying sister, who is experiencing difficulties managing her health and the costs associated with it.
I have type 2 diabetes, and I know that this is a condition that plagues the wallets of countless Oregonians. I am lucky to benefit from the VA, so I’ve rarely had to pay for the highest prices of insulin that you hear about on the news. However, I constantly think about and worry for those who do have to face the monthly cost of their insulin. I know how difficult it can be because I once faced paying the out-of-pocket price for my insulin.
When I lived in Arizona, my mail-order shipment of Lantus insulin came late and arrived unrefrigerated. That made the insulin unusable. Because this medicine is necessary for my health, I immediately went to my local pharmacy to replace it –– I didn’t have time to wait for a new mail-order shipment to come in. I was told it would be $250 to purchase that insulin out of pocket.
Who can afford that? I know that I, and other retirees like me, can’t. I was forced to put it on a credit card and pay it back on payments with interest. If this happens again, I simply don’t know what I would do. I don’t have a credit card anymore. I would have to make a decision between purchasing my insulin and purchasing other necessities like groceries. It shouldn’t be this way for patients.
I have heard of patients crossing US borders to get their insulin for much less. The United States should make importation of medicines legal, so that patients can receive their medications without hurting their pocketbooks like I had to.