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.
My name is Janet Schaeffer and my hometown is Grants Pass, Oregon. I have come to love this community throughout my years of being an in-home caregiver in our area. I loved my job and took pride in caring for the elderly. Unfortunately, I had to retire when my health declined.
I have COPD, a progressive lung disease that makes it difficult to breathe. My doctor prescribed me an Anoro Ellipta inhaler to treat my symptoms. When I went to pick it up, I found out that the inhalers retail at about $500 a piece. My insurance covers $300 of it… leaving me with a whopping $200 to pay for out of pocket.
I need this medication, but as a retired woman on social security, I’m living on a fixed income. I can’t afford the $200 price tag, which means I can’t afford my inhaler. That means I can’t breathe well –– which means I can’t work, clean my own house, or garden and cook like I used to. My quality of life has declined immensely because I just can’t afford my medication.
I know there are countless others in our community that are experiencing the same thing. I also know that our lives would be greatly improved if our drug prices were lower, or if we could import our medications from across the border. We have all heard stories of patients crossing borders to get their medication at a fraction of the U.S. Price. It just doesn’t make sense that we are paying so much in comparison to our neighbors. What hurts me the most is thinking about the countless patients with diabetes, cancer, and chronic illnesses who are facing extreme costs for their medication just like I am. We need relief now.
My name is Terry Sissel, and I am a mother and a retired nurse. Last year, the prescription I use to manage my diabetes, Levemir, cost me over $3,000 out of pocket.
I am on Social Security, Medicare, and supplemental plans for Medicare Part B and prescription drugs. My income on Social Security is limited, and a lot of it was going toward affording the drugs that keep me alive. Fortunately I have recently been able to switch from Levemir to an oral medication, which costs me less out of pocket.
Though I am fortunate to be able to switch from the injectable to the oral medication, the financial worry of having to go back on Levemir never leaves my mind –– and not everyone is lucky enough to be able to switch medications when one is too expensive. Even with this switch, the cost of some of my oral medications is still outrageous. One drug that I am on, Farxiga, is listed at $491.41 per month, a 58% price increase since it came to market in 2014.
I am more fortunate than most, but spending over $3,000 a year on prescription medications was a huge financial burden, and that burden remains heavy in my mind. To afford these drugs I had to cut the number of trips I took to visit my daughter and her family. I never take vacations for leisure and I have no wiggle room in my budget. I’m living as frugally as I can and I’m still struggling because of drug prices.
The stress and worry of managing an illness is enough of a burden alone –– no one should have to worry about the financial implications on top of that. The cost of prescription drugs is too high and it is time for real change.
My name is Lori Horner, I am 57 years old, and I fight my cancer every day.
I was initially diagnosed with Chronic Myeloid Leukemia on April 4, 2017 –– that’s the day my life changed forever. It came as a total shock to me and my family. I believed this was my death sentence. I began my treatment, and within three weeks I received my chemo pills. When I saw my bill, I was utterly shocked. It was $13,000 for just one month’s supply! This is a medication that costs over $400 a pill and that I have to take every day for the rest of my life. No if, ands, or buts about it.
I am currently on both Medicare and Medicaid, but not for long. Once I hit 65, I will lose my Medicaid benefits, and I don’t know how I will continue to manage my health. I often joke with my friends that I must own share in a yacht somewhere with the amount of money I’ve put in Big Pharma’s pockets. It is almost criminal.
My biggest fear is that I will end up in hospice because there is no way I can afford this. Eventually, my treatment will have to stop and I will just pass away. I have prepared myself for this heartbreaking reality –– but I shouldn’t have to. This shouldn’t be the reality for patients.
I’m more than angry over this. It is ridiculous that patients like me have to go through this on top of our physical symptoms. Our elected officials must act. Lives are literally at risk. We must do better by American patients.
My name is Bob Fowler. I am a North Ridgeville, Ohio resident, a soon-to-be-retired college professor, and a cancer patient. I am also one of the thousands of people across Ohio who is desperate for relief from skyrocketing drug prices.
I was diagnosed with multiple myeloma in March 2006. I received a stem cell transplant in 2009, and shortly after that began taking a pricey chemotherapy drug, Revlimid.
For the last 10 years, I have taken Revlimid to treat my incurable blood cancer. Ten years ago, this drug cost my employee medical insurance plan $7,143 for a 28-day supply; today the price has jumped to $14,602. The cost has more than doubled for the exact same drug. Not so much as a molecule has been changed –– just the price. Every 28 days I receive 21 capsules of Revlimid; there are 13 of these 28-day cycles in a year; this amounts to approximately $190,000 per year.
Now that I am retiring, I am weighing my options for Medicare, and God only knows what the outcome of that will be. I am currently working with several knowledgeable experts to help me navigate the Medicare labyrinth to make the best choices for my wife and me. Early estimates tell us we can expect to pay at least $12,000 a year for my Medicare Part D drug coverage alone. Believe it or not, this was actually a relief to me. With the high retail price of my super-drug, I was afraid that it would cost me many tens of thousands of dollars under a Medicare Part D drug plan, because there is no mechanism currently to curb soaring Medicare drug prices.
Allowing Medicare to negotiate drug prices would change the lives of so many patients like me. Rapidly rising prices for drugs like mine are a good example of why arbitration is needed more than ever. Medicare negotiations would give me hope that the price of my super-drug would stop increasing like a runaway train. It would give me hope that my wife and I would not deplete our retirement savings due to my medical expenses. It would bring me such relief to know that Medicare drug prices are being managed rationally and logically. I am strongly in favor of allowing Medicare to negotiate drug prices. My financial health and perhaps even my life itself depend upon it.
My name is Ruth Rinehart and I am a resident of Tampa, Florida. I am a nurse case manager and just like some of my patients, I rely on life-saving medication for my survival.
I have a primary immune deficiency and have required an antibody replacement every three weeks for the last 26 years. The cost of my infusions varies between $3,000 and $4,000 each time. As a result of this, I have to make sure I am covered under the most expensive Medicare plan to make sure the infusions are covered at the highest rate. The cost of the insurance plan is equivalent to the cost of our mortgage.
A few years ago, we fell victim to the decline of the economy, the housing boom, and my husband’s job loss. All of that coupled with my high drug costs caused us to lose our home and file for bankruptcy.
This has had a devastating impact on our lives. Instead of having retirement savings, which we were on track to have before my illness, we are now living month to month on Social Security. I had to go back to work as a nurse at 67 years old in order to make ends meet.
If drug costs were more affordable, it would take such a financial burden off my family. My husband is now also ill, and unfortunately, his drugs are not covered by insurance and so he cannot take what is being recommended for him. All we want is access to our medication without having to bankrupt our family.
That being said, as a patient who is reliant on the services of Medicare and who would benefit from more affordable drug prices, I am strongly in favor of the proposal to allow Medicare to negotiate prices with drug manufacturers. This measure would change the lives of countless patients. Drug prices are out of control, and Medicare negotiation would help to remedy the plight we face.
My name is Robert Keller. I’m a 66-year old resident of Parsippany, NJ.
I have dealt with Type 1 diabetes for more than 40 years and I’ve had a kidney transplant. I have relied on long-term disability due to my diabetic symptoms. This allowed me to not only afford my medication, but also to stay at home with my two sons and take care of them. It’s been challenging, but I prefer to see the bright side of things. I got to stay at home with my two sons and be the best dad I could be. I taught them to fish, I was involved as a school parent, and even the only stay-at-home dad at the school’s Mother’s Tea.
But my disability income ended last year, and now many of my healthcare costs depend on my wife. She is 65 and still working, with no retirement in sight because of the high costs of my medication. She can’t stop working because if we were to use Medicare, my medication would cost my family up to $1,800 per month. That’s completely unaffordable.
I wish that my wife could retire and we could move to Medicare, but because of the high cost of medication, that simply isn’t an option. I believe that Medicare should be able to negotiate lower drug prices for their beneficiaries. If they were to negotiate down the cost of my medication, my wife and I would enjoy a higher quality of life.
I share my story because I want others to value good health, to thank God for it, but also, to try to take a walk in other people’s shoes. Think about when it might be you or a loved one in that hospital bed –– and how you would like to be treated. I can assure you you’d want to be able to afford your medicines.