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 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.
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.
SAINT PAUL, Minn. — Eveleth patient Travis Paulson, who lives with type 1 diabetes, will testify in front of the Minnesota House State Government Finance and Elections Committee this afternoon in support of the bipartisan legislation HF 801, which would establish a prescription drug affordability board designed to address the high prices of prescription drugs for Minnesotans.
Paulson was diagnosed with type 1 diabetes at age 14 and has struggled to keep up with the high price of insulin in recent years. His insulin, which he needs to survive, currently costs $300 a vial, which comes to $1,500 per month. Paulson has had to work odd jobs, living paycheck to paycheck in order to stay alive.
“Unfortunately for me, years of rationing insulin has caused long-term complications that never would have occurred if I had access to affordable insulin,” Paulson will tell the committee.
“These out-of-control drug prices have serious consequences for Minnesota patients and contribute to excessive costs for the state. We need our state government to pass House File 801, which would rein in drug prices while increasing transparency around the pricing practices of drug companies. Because drugs don’t work if people can’t afford them.”
HF 801 would:
The hearing and Paulson’s testimony can be watched here at 6:00 PM CT.
The bill was previously heard in the House Commerce Finance and Policy Committee, where patient advocate Ramae Hamrin testified in support of the bill. It passed out of committee on a 11 to 7 vote.
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My name is Kirk and I live in Bowling Green, Kentucky. I’m 52 years old and am self-employed. I’ve worked hard and enjoyed being productive my entire adult life. I’ve been blessed with the opportunity to be self-employed and be successful and happy in my career. I am fully living the American dream. Our freedom allows us so many opportunities and I thank God for them all.
Having diabetes type 2, I have quickly learned that there is something very wrong with the American health care system — and it doesn’t take much effort to track the problem back to pharmaceutical corporations. It’s obvious that these companies are putting massive effort into creating monopolies on specialized drug treatments. They make the most money monopolizing drug therapies for life-threatening diseases that affect large amounts of the population. This “formula for success” finds diabetes patients ripe for the picking.
I have an excellent doctor who takes my health care seriously. She monitors my disease and has developed a comprehensive plan to manage my illness. But the amount of time she and I must spend trying to get access to the medications I need is utterly ridiculous.
Health insurance companies are rightfully balking at paying out-of-control prices for these drugs. This leaves my doctor having to make multiple attempts at getting drugs approved or finding alternatives that might not be as effective. And it leaves me, the patient, constantly changing drug stores to save any money possible and spending hours of my time each month tracking down manufacturer “patient assistance cards” that are obviously geared to get the maximum price a person can stand to pay without losing the sale. It’s contrived, extremely greedy, and in my opinion, evil.
I consider myself as fitting solidly in the middle class. My career as a computer network engineer is a rewarding one and I am more than happy with my compensation. In years past, compensation at my level would ensure a worry-free, comfortable retirement. Even after the massive effort from myself and my doctor, the lowest price I pay each month is $1,000 for TWO drugs (Synjardy and Ozempic.)
I am already cutting back on other areas of my life so I can afford these two drugs. What started out decades ago as a smart plan for a comfortable retirement has ended up being a large fund that will be necessary to simply pay for my medications in retirement — and not much else. I know many people my age who are in much worse shape retirement-wise. This leads to quite a bleak outlook for the future of our nation. Who will these companies squeeze for cash when we all run out of money?
My name is David Cruz and I live in Fort Collins, Colorado. In 2015, I was diagnosed with diabetes after my sugar levels reached near fatal levels. After spending time in the hospital where my levels continued to rise, my medications were finally able to bring my blood levels down. I now take Lantus, metformin, lisinopril, and allopurinol.
I dread seeing what the cost will be every month when I have to refill my prescriptions. I’m retired and have insurance coverage through Medicare, but every year my out-of-pocket costs increase. My Lantus insulin alone has a monthly list price over $1,100 and even with insurance still costs me about $130 every month. Once I hit the Medicare cap, which I hit in September of this year, my monthly cost goes up to $250. That’s a huge expense for anyone, but especially for someone who’s retired.
These prices are already unmanageable, but with Lantus continually increasing its price, my out-of-pocket costs continue increasing as well. Every year I hit the Medicare limit for out-of-pocket costs just on my prescriptions, and it seems that I hit this limit earlier and earlier every year.
The high costs of my prescriptions kill my budget. It’s incredibly difficult to plan around the hundreds of dollars I spend on prescriptions each year when retired. I want to be able to plan ahead and stick to a budget, but the uncertainty about my rising prescriptions costs makes that difficult, and with such high prices, I’m lucky if I can afford all my prescriptions and not get behind on bills.
Earlier this year I broke a vial of my Lantus insulin, which only makes affording my drug even more expensive. It’s frustrating that one accident can destroy my budget for the rest of that month and put my health at risk. Because of their astronomical and constantly increasing cost, my drugs are unaffordable for me. I need these drugs to survive, so I end up making sacrifices in other ways, but I don’t know how much longer I’ll be able to keep up with these costs.
I don’t understand how drug companies expect seniors to survive with these high drug prices. Our necessary medications cost hundreds of dollars and many of us are left deciding whether to buy our prescriptions or pay our bills. We should never have to make a decision between staying healthy and paying the bills to keep a roof over our head, and an accident like breaking a vial shouldn’t set us up for financial ruin.
We need leaders willing to work for patients and seniors like me. Our system should work to bring down drug costs and limit price increases like I’ve experienced with my prescription drugs. Insulin prices are already high enough and keep rising with no just reason. Patients across the country are suffering and sacrificing just to afford their medicine.
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 Nilton Leon, and I am a hardworking father from Santa Ana, California. I also have type 2 diabetes, an illness I was diagnosed with in 2010. It has caused me great hardship in my life and has greatly affected my finances as well.
My doctor and I tried out various insulins and treatments, and we ended up landing on a routine that worked for me. I was prescribed Lantus, Lisinopril, Atorvastatin, Victoza, and Metformin for my diabetes and high blood pressure. I found that this regimen really transformed my health.
Everything was going well until I suddenly become unemployed. I lost my health insurance at that point, along with my prescription coverage. When I went to fill my medication at my pharmacy, I was shocked to find that the cost had become outrageously high. Suddenly, my Victoza and Metformin were $100 each. There is no way I can afford that.
Because of the high cost, I was forced to stop taking my medicine. I was living off of unemployment, and that barely covered my rent. I just couldn’t pay for my Victoza and Metformin anymore.
My health deteriorated. I got sick. My kidneys started going bad because of my high sugar levels. I lost a ton of weight and began to lose my hair. My energy was so low that I could no longer keep up with my loved ones.
I recently was able to get back on health insurance. I am now paying only $15 per medicine, but the costs still add up and it still takes a good chunk of my budget.
I am glad I no longer have to skip my medications, but I fear for the day that I am unable to pay for them once again. I know I am not the only one who faces these high drug prices. Patients like me shouldn’t have to fear for their health just because they can’t afford their medications. These medications are simply too expensive.
My name is Karen Macedon and I’m a longtime resident of Sacramento, California, a mom to three and grandmom to seven , and a waitress. I At 58, I’m looking forward to retiring in the future and spending more time with my family —perhaps going on a cruise or two, as I love to travel.
I live with asthma, allergies, and type 2 diabetes, and my drug costs are standing in the way of leading a full life.
My doctor thought that Symbicort would be the best medication to manage multiple breathing conditions, but my insurer refused to cover it –– and I learned, standing at the pharmacy counter, that it would cost $200. I realized then that I would never be able to get the drug I needed and suffered without it for a time. Suddenly, I learned it was covered again. I don’t know how long this will last, and I hope every day I won’t get another shock at the pharmacy counter.
Doctors prescribed bydureon for my diabetes. Conveniently, it is a once-weekly injection. Because my insurance wouldn’t cover it at all I have to wait on samples from my doctor. I’m grateful for the samples, but I wish I wasn’t forced to depend on them. I would not be able to take this medication if I had to pay for it myself, it is simply too expensive. I was recently given a coupon to get a discounted rate and four vials for free, but I am still worried about when those vials run out. It’s all a guessing game.
My health care costs add up. I have to get needles for my Lantus insulin; I have copays to see my specialty doctors. And then I am faced with high drug prices. I just want to be able to enjoy my time and not have trouble breathing or managing my blood sugar. Patients like me deserve better.