Latest News | Oct 5, 2020

Costs are piling up.

My name is Ken and I’m from Gibsonia, PA. I live with an incurable blood cancer called multiple myeloma, as well as atrial fibrillation and a number of other health conditions.

Thankfully, my multiple myeloma is in remission so I am not currently taking Revlimid, a popular but expensive treatment. But I used to pay about $1,100 out-of-pocket every month for it while my insurance was billed another $8,000. I’m not eligible for the drug company’s patient assistance programs, so if I relapse and need to get back on Revlimid, I’ll be facing about $16,000 in out-of-pocket payments next year. 

Even in remission for my cancer, I still find myself in the Medicare donut hole. I’m not getting assistance for the other medications I take, and my drug and other health care costs are piling up quickly. Just one drug I need, Eliquis, costs me $328 for a 90-day supply, and I spend about $150 every three months for several eye drops that help treat my glaucoma. I’ve also spent about $15,000 on hearing aids. Looking further down the road, I will probably need a pacemaker as well. 

I worked as a teacher of computer technology for 38 years, so I have a guaranteed pension and have been able to make my payments so far. However, these exorbitantly high drug prices have forced me to make some difficult choices. I had to sell one of my cars and take out a home equity loan in order to pay for my medications. I also cut back where I can on everyday necessities, like phone and internet services. 

The average person can’t afford prices like this, especially those living on a fixed income. There’s only so much money to go around, and I live with the possibility that I may one day not be able to access all the drugs I need due to these high prices. But I try not to think about that because it really wears on my mind. All I can do right now is take things day by day.

Drug companies keep playing with the numbers and finding ways to make more money any way they can. It seems like they keep increasing their prices in anticipation of the implementation of minor cost-cutting measures. I hear lawmakers say they want to help Americans with prescription drug costs, but I need to see them work on legislation that meaningfully lowers drug prices for all of us. We need help now.

In 2018, I was Ramae Harmin –– a 47-year-old single mother, long distance runner, and high school math teacher. Then I was diagnosed with an incurable blood cancer called multiple myeloma. Now, for the rest of my life, I will be a cancer patient. 

I took a leave of absence from my job as a teacher to undergo several surgeries, radiation, an induction chemotherapy regimen, and a stem cell transplant. My slow recovery from the transplant coupled with the intense fatigue from my daily maintenance regimen has prevented me from returning to work. I have just enough energy to take care of myself and my son.

Ramae Hamrin.png

I also have just enough money to live. For now, I receive long-term disability from my former employer and from SSDI. I am currently still on my private insurance plan through Cobra, but I will make the switch to Medicare at the end of the year. My only income is 60% of my former teaching salary and some child support that will end when my son turns 18. I also have two college-aged daughters that I help to support as well.

Other than a high yearly deductible and the monthly Cobra premiums, I have paid very little out-of-pocket for my medical treatments and medications. My maintenance drug, Revlimid, is not fully covered by my insurance plan, but I do qualify for $25 copays through my drugmaker’s assistance program.  The drug maker charges my insurer between $15,000 and $25,000. My assistance will evaporate once I start on Medicare. I’m terrified.

Myeloma patients on Medicare are paying as much as $3,000 out-of-pocket per month for Revlimid and other drugs. There are grants available for some, but not all qualify. I don’t know if I will qualify or if the grant money will be there when I need it. What I do know is that I won’t be able to afford this monthly cost without selling my home and using every penny I’ve managed to save –– and even that will only last so long.

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.