My name is Deborah Withrow and I have interstitial cystitis, a chronic and painful bladder condition that has very much altered my life. My doctor worked with me to find the medication that would help me the best. Eventually, we found Elmiron, the only medication that has been effective in treating my symptoms.
Unfortunately, Elmiron costs $800 per month. The manufacturer covers it for me for 11 months out of the year, but that last month is a bank-buster all on its own. I most definitely don’t have $800 laying around, so I do my best to save in the months leading up in order to afford it. I am grateful the manufacturer is helping me out this year, but I don’t know if they will help next year. It’s scary to have to rely on that charity.
In the past, I have not received assistance, so I had to set up a GoFundMe in hopes that friends, family, and strangers would be able to help me afford the drug. I worry every day that my assistance will change and I’ll be stuck in the position I was in last year.
I am on Social Security and a fixed income, and I know that I can’t just shell out $800 on a whim. I also know that there are thousands of other seniors who wouldn’t be able to either. I am raising my voice on this issue for myself and for others who face the difficulty of affording their medications.
(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 Scarlett Woodard and I am a multiple sclerosis patient. At 57 years young, I expect to have many more full years ahead of me. But as my circumstances have changed, I have had to readjust my expectations.
I’m now living on a fixed income and staying on my own in Georgia in order to be close to family. I was formerly an office manager, but I had to stop working because of the increasing severity of my multiple sclerosis. The nerve pain I deal with on a daily basis is excruciating. It has affected my ability to drive, my mobility, the use of my hands — even my ability to smile.
I can’t smile because I can’t afford Lyrica. Lyrica is a medication that treats nerve pain, and it would help with the stinging in my mouth and the effect the nerve pain has had on my taste buds. The cheapest I could find this medication was $240, but depending on my coverage, it would sometimes be $400. Before my divorce, my husband’s insurance would help me pay for it. It really improved my health and made me feel so much better. But now I only have Medicare, and they just don’t cover the Lyrica — so I simply can’t afford it.
If I were able to pay for the Lyrica, I would be able to crochet and paint like I used to love doing. I would be able to smile and better enjoy the foods I love. I know there are thousands of others suffering from multiple sclerosis who are in the same situation as me. I wanted to speak up and share my story not only for myself, but for others dealing with these horrible drug prices.
My name is Donna Renfroe and I was diagnosed with acid reflux in 1997. In addition to that, I also suffer from high cholesterol. Thankfully, my doctors have always worked with me to find the best medications to treat my conditions.
I have been on Nexium for a number of years for my acid reflux, but I recently found out that my insurance company won’t cover it anymore. I thought it would be no problem and I could just pay for it myself because some years ago, it was $126 a month without insurance. I was surprised when I found out it is now $700 a month. Nexium is the only thing that controls my symptoms, but I can’t afford the $700 price tag. And Nexium is not the only medication I have had trouble affording. My doctor prescribed me Repatha for high cholesterol, and there was no option but to go without it due to the price.
What would you do if you were told it would cost $1,000 for just two shots of Repatha? I know most people I know would simply not take it, and that was the case for me. I simply could not afford it.
I am a patient who will continue to face the life-altering symptoms of my conditions, and I wish I could afford the medicines that made my quality of life so much better. I am sharing my story to show that patients are not alone in their struggles. There are everyday people, just like me, who are struggling to scrape by and keep their good health. We deserve better.
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 name is Jacqueline Means and I am a longtime resident of Portland, Oregon. I want to tell you my partner’s story.
He was diagnosed with leukemia many years ago and had a bone marrow transplant in July of 2017. It was wonderful that he was able to receive this treatment, but the side effects brought on several other health issues.
He developed a severe eye infection and was promptly prescribed Jadenu, a little blue pill that comes at an exorbitantly high cost. We were told it retailed at $89,000 a month.
We were stunned. Who could afford that? Our insurance told us that they would not cover it, so we lived with constant worry that we would not be able to access the drug. We simply wouldn’t be able to afford something like that. Thankfully, we found a specialty pharmacy that sold the medication at a cost we could afford, and were ultimately given assistance by a private program. But patients shouldn’t have to jump through these hoops to access medication they desperately need.
We are senior citizens living on a fixed income. We want to enjoy our retirement, not experience sticker shock when we go to pick up my partner’s necessary medication.
We fear for the day when this happens to us again, and maybe our medication isn’t covered by the specialty pharmacy. What will we do then? We know there are thousands of other Oregonians experiencing the same hardship, and we encourage others to raise their voices and fight back.
My name is Ann Neilson, and I am a retired nurse with chronic dry eye syndrome. I have been prescribed Restasis for some time now, but I haven’t taken it as prescribed due to the horrendous cost. A full dose would cost me more than $2,700 per year out of pocket. It is so important that I take the drug regularly so that I can keep my corneas healthy. Without proper treatment, I could do permanent damage to my vision.
I have ordered Restasis from Canada in the past because it only costs $1,137 per year there, one sixth of the total U.S. price. But it just isn’t fair. I shouldn’t have to get medication from another country just because the drug company, Allergan, continues to raise prices here at home. Restasis is not a new drug. Allergan has employed a variety of methods to keep generic competitors off the market, meaning that there is no check in place to keep Allergan from raising the price year after year. Worst of all, there is no way to know how they justify their price increases.
But high drug prices don’t only affect me. My husband must take Xarelto as prescribed for AFib and to prevent fatal blood clots. It’s $435 each month total, with an out-of-pocket cost presently at $174 a month. We should not be getting priced out of the drugs we need to survive.
As a nurse, I know there are lots of other stories out there. When working in home health, I discovered scores of patients taking only half of their prescribed doses or skipping doses altogether due to limited incomes –– ultimately causing poor health outcomes. I deserve to know why my drug prices are increasing, and so do the patients I used to serve in the hospital. I need Restasis to protect my sight, but some of my patients need their medications just to survive.