Latest News | Oct 5, 2021

Big Pharma’s talking points don’t hold up.

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 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 John Lindemulder and I am a 67-year-old retiree resident of Diamond Bar, California. Los Angeles County is my home; I was born and raised here and I worked to benefit the state for many years.

I was enjoying retirement with my wife up until October 2017, when I received a diagnosis that changed my life. My doctor told me that I had leukemia. 

I had been quite healthy up until I received this diagnosis, and it was a great shock to both my family and my finances. But my altered state of health was not the only difficulty I began to face at this time. I also began to be greatly affected by the cost of my chemotherapy and other medications.

I have Humana insurance, but when I first went to pick up my medication, I was shocked at both the cost of the drug and my copay. My insurance was paying out about $1,000 for a month’s supply, and I was paying a $100 copay for each medication. I was stunned. There was no way I would be able to afford this — it was out of the question.

I was forced to look for alternatives, and I found City of Hope, which referred me to a pharmacy that allows me to make payments. I currently owe $1,500 in copays to the pharmacy. I make payments for my medications of $100 a month currently. My life and my budget has been greatly affected; it is really making things tough. I’ve been rationing my medicine and taking less than I should.

I am in disbelief that this is my situation. I want to enjoy my retirement and do things I love, like reading classic literature and spending time with my wife. Instead, I am consumed with worry about our financial health.

Patients like me deserve better. Californians deserve better. I urge my legislators to fight for lower drug prices.

My name is Christina Raymond and I live in Limestone, ME. I was diagnosed with breast cancer three years ago. I also have an autoimmune disease called Lupus, which makes managing both that and my cancer very difficult and extremely costly.

When I was first diagnosed with breast cancer, I had no clue about the hurdles I would face when it came to affording the medications I need simply to live. In order to manage my disease, I require several medications –– Lupron, Tamoxifen, and Neulasta –– in addition to my regular chemo treatments. Lupron costs me $1,500 per month and my Neulasta runs $6,000 per shot.

In order to afford my medication, I have had to get quite resourceful. I was not able to get Lupron copay assistance and I therefore rely heavily on grants. The process is quite daunting, but it must be done in order for me to survive. First, I must secure a grant to assist me with the costs. Once the medication is paid for, I then have to get approval from the hospital to administer it to me. Once approved, then I can finally get the treatment I need. The process of finding a way to afford my treatment takes as much of a toll on my health and wellbeing as the cancer I am fighting. Medicine does no good if people cannot afford it.

Affordable medication is necessary for my survival. If my drugs were more affordable I would have a much easier time maintaining my health. I could pay my mortgage and provide for my family. The high costs put a lot of pressure on my husband, and since we are both on fixed incomes the stakes are very high. Prices must come down. It is a matter of life and death for patients like me.