Families across America are struggling under the burden of soaring prescription drug prices. Almost a third of people across the U.S. have not filled prescription or followed a prescription regimen specifically due to cost. And trying to afford necessary, life-sustaining medications often forces patients or their loved ones to make trade-offs or sacrifices. We spoke with Catherine Horine, a double lung transplant recipient who lives in Illinois, about how much prescription drugs prices have really cost her. In addition to the price of the medications themselves, they have cost her peace of mind, her hobbies, and might cost her home in the next few years. People like Catherine should not be forced to choose between financial ruin and access to the prescription drugs that their physician has ordered.
Congress is debating the Build Back Better package right now to lower drug prices for millions of people. Allowing Medicare to negotiate lower drug prices and make sure everyone benefits from the savings would mean people would no longer have to choose between basic financial needs and prescribed medications.
First of all, can you tell us a bit about yourself? If you wanted someone to know you, as a person, how would you describe yourself?
I consider myself a person of conviction who believes in helping others. I am a patient advocate actively working to assist other people with medical challenges. I love movies. I’m a cultural progressive who keeps informed on current events. I used to love outdoor activities but I’ve had to limit them due to my lung transplant, epilepsy and other medical restrictions. I’m a devoted daughter to my 91 year old mother, sister to three brothers, aunt to nieces and nephews and great aunt to one in the next generation. And lastly, I’m a cat lover and caretaker to my roommate, Zuzu the rescued kitty.
You’ve mentioned before that you need to regularly take medications. What do you take them for/to treat?
I had a lung transplant on November 3, 2014 so I take anti-rejection medications. Since anti-rejection medications cause serious side effects, I must take many other medications and vitamins to counteract those side effects such as medications for high cholesterol, osteoporosis, vitamin loss, reflux meds, and folic acid. I also take medication for cardiac rhythm issues, as well as anti-seizure medication for Epilepsy.
How much do you pay for those medications? Does your insurance contribute to them, and if so, how much?
I have a Medicare Drug Plan that has a $450 deductible. My co-pays vary based on the drug and where I fall during the year in the Medicare program (higher if I’m in the donut hole). Last year my medication expenses amounted to roughly $5,000, even without counting the premiums for my Medicare Drug Plan and Supplemental. I had to apply for patient assistance for one of my medications this year because the co-pay had gone up to $450 a month and I couldn’t afford that. I was approved for this year, but I’ll have to re-apply every year. The co-pay on my two cholesterol drugs was put into a more expensive tier this year but my doctor was kind enough to write a letter stating medical necessity for them and get the co-pay to stay the same. I expect to have to go through process all over again next year.
What percentage of your income is just going to pay for your prescriptions?
My drugs costs take up 23 percent of my income.
How is that price affecting your life? If you didn’t have to pay that much, what would you be doing with that money?
I am running out of money and scared of being homeless. My savings are nearly gone, my pension is not much and I will have to start drawing on it to pay my bills next year. My social security only covers my rent and utilities. Everything else comes out of savings. I am losing $10,000 a year as of last year. My financial advisor has told me I will run out of money (aside from my social security income) in the next 5 years. I have no support system and am looking for low cost senior housing. Whatever I could save on drug costs would go to help me pay my bills.
Is there anything you’ve had to give up to afford your medications?
I have given up everything but necessities. I do not go to movies, out to eat, shopping, etc. All my money goes to medical/drug and living expenses.
How do you feel about the company that charges you so much for something you need?
I feel inadequate and fearful of running out of money. It’s embarrassing to have to apply for patient assistance, provide them with proof of my income and drug expenses.
Have you ever had to skip or ration your medication because of cost? How did that impact your health? How did that realization feel?
Yes, I’ve had to skip some of my required vitamins. I did it for a while, but stopped after feeling guilty and concerned that it might impact my health.
How important to your health and well-being is your medication? What would happen without it?
As a transplant recipient it is mandatory I take my medications or my body will reject my transplanted lungs. All the other medications are required to counteract the serious side effects of my transplant medication. I must take my anti-seize medications to avoid having a seizure, and I must take my heart medication. These are not options.
Do you feel frequently worried about paying for your medications? How often does that concern cross your mind? Weekly? Daily? Hourly?
I constantly worry about my finances and the cost of my medications and how the co-pays increase every year or get put into a more expensive tier. I worry all the time.
Congress has the power right now to lower prescription drug costs, by allowing Medicare to negotiate with drug companies, and extending those lowered prices to everyone. If you were speaking to your representative right now, what would you like to say to them?
I would explain how the high costs of my drugs keep getting more expensive, I live on a limited income and have been told I could very likely end up homeless in the next few years. No one should have to choose between life and death and being homeless.