Latest News | Mar 10, 2022

I am bewildered by the high price of my inhaler.

My name is Cynthia Tidrick and I live in Princeton, WV. I’m 60 years old, work as a contractor for a life science company, and live with emphysema.

Emphysema is a progressive lung disease that, even when treated, leads to shortness of breath and continued scarring. So that I can support myself, perform activities of daily living, and enjoy physical mobility, I need a long acting inhaler called Bevespi. This medication opens my airways and helps me breathe easier. However, Bevespi has become increasingly unaffordable.

Cynthia is sitting in a living room looking at the camera through black glasses. Her hair is white and worn short and she is wearing tree of life earrings.

I am a Technical Writer and for the last decade have worked as contracted labor. I continue to work contracts, usually six months at a time. Consequently, my health insurance is always precarious. Over the past few years, the cost for my inhaler has ranged by hundreds of dollars depending on my insurance plan. But over the last 18 months, which included two contracts and a period of unemployment, I have paid and continue to pay $449 for a 30 day supply. I am bewildered by the high price of my inhaler.

I have tried other long acting inhalers that were financially affordable, but the side effects were debilitating and required additional medications to treat.

Thus far, I am very lucky to be able to afford my inhaler despite this high cost. But all that has to happen is for my current contract to fail to renew, and I am in trouble. I budget around this cost and keep the price in mind every month. I am 60 and believe I would be better served by affordable medication and saving that $400 dollars a month for my pending retirement. The fewer services I need as a retired senior, the better for West Virginia and the United States tax payer.

Lower drug prices for long acting inhalers like Bevespi would bring peace of mind to me and countless other patients across the country. Having predictable costs over time makes budgeting easier, savings more robust, and we all know less stress makes for a happier public. 

Currently, Congress has the chance to pass meaningful drug reforms that would allow Medicare to negotiate lower drug prices, curb drug price increases that exceed inflation, and cap out-of-pocket costs for seniors. I need my Senator, Joe Manchin, to pass these reforms now. West Virginians like me can’t wait any longer for relief from high drug prices.

My name is Janet Schwartz, and I’m a retired nurse from Newark, DE. I’m 74 years old and was finally diagnosed with multiple sclerosis at 59 years old after experiencing symptoms, like nerve and joint pain, for a very long time. 

The price of my medications has tarnished what are supposed to be my golden years.

For several years, I was forced to rely on grants to afford Tecfidera, which carries a list price of over $8,200 per month. However, I haven’t had this medication for nearly a year because the drug maker now says there are no grants. It’s frustrating because I loved this medication. It drastically improved my quality of life and my symptoms. Now I’m no longer taking the medication, I’ve experienced intense hot flashes, leg spasms, double vision, brain fog, and chronic pain. I’m ready to give up. 

I also have type 2 diabetes and was forced to stop taking Trulicity because $200 a month was too much for me. I’m on another drug for the condition, but it doesn’t work as well at all. The switch also costs me time. I have to monitor my blood sugars extremely closely on this less-effective drug.

It is all so difficult to live with.

My lawmakers should know I live on Social Security — $1,600 a month. I would like to ask them how they’d feel if their mother or sister or someone in their family needed medications and couldn’t afford them? Medications should be for everybody, not just people who can afford it.

I have adult children and I don’t want them to have to pay for my drugs and worry about me. I didn’t have children because I wanted to be taken care of in my old age. I just want them to be happy. I just want to afford my prescription drugs.

My name is Brenda Dickason and I am a retired Tucson police department detective and middle school science teacher. I have asthma and am also allergic to both bee stings and latex. I am also a small business owner who sells specialty soaps and seasonal wreaths — in large part to help pay for the very expensive medications I need for my asthma and allergies.

I am supposed to carry an EpiPen with me at all times to avoid hospitalization for my severe allergies. I am 66 years old and recently switched to Medicare. I can’t believe how expensive my EpiPens are on Medicare — over $250 each and every time. Because of the price, I have a difficult time refilling my prescription.

There have been times where I could not afford to carry an EpiPen and ended up hospitalized with anaphylactic shock after being exposed to latex.

I have worked hard my entire life, giving back to my community as a detective and teacher and was looking forward to my retirement. I had no idea how crippling the costs of both my EpiPen and inhaler would be. I now rely on my small business sales in order to be able to afford the cost of my prescriptions. 

It is unfair that seniors like myself should have to worry as much as I do to afford our prescriptions. I shouldn’t have to spend my retirement praying that my small business sales go well so that I can finally purchase my EpiPen. It isn’t right. Something has to change. Drug prices must be lowered now.

My name is Holly and I’m from Rockville Centre, New York. In 2014, during my freshman year in college, I was diagnosed with stage 4 Hodgkin’s lymphoma. In a matter of days, my whole life changed from focusing on my new classes and getting used to being on a college campus to dealing with intense treatment.

I was only 18. My top focus should’ve been my health and treatment, but unfortunately with the high cost of my chemotherapy, the drugs’ costs were also something I had to consider. Just six months of chemotherapy and a variety of other prescription drugs I needed totaled over $200,000. Luckily, my insurance covered a large portion of the cost for the first few months, but after I lost insurance, the second half of my chemotherapy cost me over $100,000.

I was lucky I only needed six months of treatment to go into remission- most people need longer, but I couldn’t fathom such a large number and how my family and I would pay for it. How could the life saving treatment I needed come at such an unreasonable price? 

I finished treatment over six years ago, but still have felt the effects of this medical debt for years after. Because of the medical debt, it was difficult to acquire the student loans I needed to return to college.

The high prices of prescription drugs are something that unfortunately could follow me for the rest of my life because of the effects of chemo and cancer. Cancer not only left financial damage on my family, but I have to experience further costs for prescriptions for egg retrieval after the chemotherapy affected my fertility.

Even with insurance, the prescriptions needed for egg retrieval to potentially have children one day cost hundreds of dollars even with insurance and are priced at almost $4,000 without insurance. And in addition to the egg retrieval drug costs, I will have to pay for hormone therapy treatment starting in my 30’s and continuing for likely the rest of my life. 

A cancer diagnosis shouldn’t come with tens of thousands of dollars in medical debt. I shouldn’t have to pay hundreds of dollars even with insurance for prescriptions so that I could potentially have kids if I decide to one day. It shouldn’t mean that for the rest of my life I’ll be paying expensive prices to pharmaceutical companies for hormone treatment therapy. That’s why I know we need reform to lower drug prices. I’ve lived with the high costs of prescription drugs for the past 7 years, and I need our leaders to act so I don’t have to live with them for the rest of my life.

My cancer diagnosis changed my life, not only medically and financially, but my diagnosis played a big part in why I went on to study microbiology in college. I want to help find innovative discoveries that will advance treatment and help improve lives. I value innovation and understand concerns about reductions in research and development for new drugs, but the Big Pharma talking point that any reduction in drug prices will lead to less innovation and will harm patients just doesn’t hold up. Patients can’t access the drugs they need already. There are so many great scientific breakthroughs that have been made that patients cannot benefit from right now because of out-of-reach drug prices. With lower drug prices, patients can get the innovation we need at prices we can afford and people like me won’t have the cost of their drugs hanging over their head for years to come.

My name is Vanessa Ladson and I’m from Dover, DE. I need to take 12 medications a day to manage multiple conditions, including fibromyalgia and lupus, which is an autoimmune disease where my body’s immune system attacks healthy tissue. To manage these conditions, I need the drugs Plaquenil and gabapentin. I also take an incredibly pricey medication called Eliquis, which prevents blood clots. These three key medications cost me up to $500 out-of-pocket each month. These prices create an incredible financial strain as my income from Social Security and a small retirement fund is only $2,100 a month. 

My husband also lives with prostate cancer and is prescribed the drug Xtandi. He gets some assistance, but it’s horrible to think of what would happen if it were to go away. 

Both of us are on Medicare. At times, it feels like I’m robbing Peter to pay Paul to afford my medications. I’ve had to ask my grown children for help in order to afford my prescriptions at times, which I hate having to do. 

I have to scrimp and save to afford to eat. But I know other senior citizens who are much worse off — some are even eating cat food to be able to afford their drugs. But it’s a catch-22: If they don’t eat, they’ll die, and if they don’t have their medications, they die. My husband and I try to help by making them food when we can.

I’ve been depressed living with these physical conditions and dealing with all these high prices at the same time. Simply put, I don’t live the kind of life I want to live. With multiple conditions, I already live with uncertainty as to the type of pain I might face day to day. I should be able to afford medicines without so much worry on top of my illnesses and symptoms.

Other countries help out their seniors. As the richest country in the world, the United States should be able to take care of us. We need to let Medicare negotiate for the prices of our medications like other wealthy nations do.

My name is Steven Alton, and I’m from Albuquerque, New Mexico. I am 69, a Medicare beneficiary and a veteran who has suffered from severe migraines for the last four years. 

My doctors and I don’t know why my migraines started to happen, but I do know that when a migraine comes on, my life is severely impacted. Migraines impair my eyesight and my balance. I suddenly can’t stand bright light. When they hit, I have to stay in a dark room lying down, sometimes for days. 

There is a medication that provides the relief I need to live my life. The drug is called Ubrevly, and 10 pills are priced as much as $3,000. Imagine that — 10 pills, $3,000. I simply can’t afford it. 

For an entire year, I jumped through hoops in order to get this medicine. I had to drive back and forth to my doctor’s office for free samples to treat my migraines. Eventually, I found out that through my insurance I owed  $216 for 10 pills. As a senior on a fixed income, that is still a massive expense for me. 

I’ve managed to come up with the money, but it isn’t easy. A friend from church paid for my first batch of Ubrelvy because I couldn’t afford it, and my church community paid for my second box. I then used my $1,400 COVID stimulus money to buy a third box. 

People like me are falling through the cracks and suffering all while Big Pharma maximizes profits. High drug prices are killing senior citizens and veterans, and pharma leaders don’t seem to care. That’s why we need immediate action from our lawmakers. Medicare should be negotiating the prices of our prescription drugs.

My name is Ronnie Rountree and I’m from Waycross, Georgia. Every 90 days, I owe $450 for 11 medications to treat the five conditions I live with: glaucoma, atrial fibrillation, high blood pressure, high cholesterol, and arthritis. Including the Social Security and pension I receive from the state of Georgia, my income is about $2,500 a month. So $450 is a big financial stretch for a retiree like me. In order to afford the prescription drugs I need now, I cut back on food I want to eat –– I get by by only eating the food I truly need to survive, and what I can afford.

The most expensive of my drugs are my eye drops. To afford these drugs that treat pressure and pain and help to preserve my vision, I pay $135 every 90 days for Cosopt, Alphagan, and Travatan. And that cost is very unpredictable –– every three months when the bill comes, I’m constantly worried that the prices might have been raised this time. 

The question crosses my mind every day: “What’s going to come up tomorrow?” I was just recently diagnosed with atrial fibrillation and additional lung issues, which might require even more medications. I’m constantly worrying and stressing about my budget, scared to spend money since I don’t know how much more I will need to spend on my medications.

I do know we should have cheaper drugs in the United States. People in other countries are able to get drugs for lower prices, so I know it can be done. I want my elected representatives to do something about drug prices. Please, care for retired people like me. Lower the prices of our prescription drugs.

My name is Lori Dumont and I am from Brewer, Maine. Unfortunately, I know all too well what it is like to struggle to afford medication since I have seen my brother struggle with his prescription costs.

A photo of two people hugging and smiling at the camera.

It all started when my then 56-year-old brother did not show up to work. This worried his co-workers, who called his neighbors to check on him. The neighbors, not getting a response, then called the paramedics. My brother was found dead. Paramedics worked diligently to revive him and he was rushed to the hospital and put on life support. His core temp was 88 degrees at the time he was found. He was immediately airlifted to another hospital where he remained on life support, not expected to live. The following evening, by the grace of God, he woke up and there was no brain damage. He spent the next month in the hospital being treated for the damages caused to his body from the ordeal, including kidney failure. Despite all that happened, I still feel lucky that I did not lose my brother that day.

All of this could have been avoided. My brother suffered ketoacidosis because he could not afford his insulin. Like so many others, his insulin costs were out of control. For both his long term and short term insulin he was paying about $1,500 a month. On a fixed income, high drug prices are literally a matter of life and death. My brother had not told anyone he was struggling to afford his insulin and was trying to control his diabetes through diet alone, which is a dangerous and deadly practice.

I am the only one he could depend on to be his advocate and support system. I have my own set of health issues that I deal with, but the role of a caregiver was almost a full-time job and my brother’s needs always came first. I was with him eight hours a day at the hospital and applied to every assistance program I possibly could on his behalf so he would have all he needed to be alright when he was discharged. He could no longer work and his kidneys were no longer functioning so he was going to need SSDI, food stamps, Mainecare, and help to get his rent paid so he wouldn’t lose his apartment. Most importantly, I had to make sure he had insulin waiting for him when he was discharged. A program at his local hospital gives insulin to people in dire need, and thank God he got enough to last until he was approved for Mainecare.

If insulin were more affordable, both of our lives would have been stress-free, both for him as a patient and me as a caretaker. It is a huge burden not knowing if you will be able to afford your medication each month. It’s scary to think that insulin might not be there when you get out of the hospital, which you were in because of not being to afford insulin in the first place. No one should have to experience those feelings.

My brother’s story is not rare. Fortunately, he survived. However, there are many who do not. The root of the problem is the high drug prices. The drug companies are literally letting people die because they cannot afford medication. It’s not right. Patients must have access to the drugs they need to survive. As a caretaker and a sister, I am seeing the impact firsthand. Something must be done –– and soon.