Eight years ago, I was having a series of colds I couldn’t shake and pain that radiated throughout my back. Still, my symptoms weren’t concerning until, on Halloween morning in 2010, I stepped out of bed and fell to the floor in excruciating pain, unable to move. A visit to the emergency room and a series of imaging scans later showed that I had a compression fracture of my 11th vertebra. Additional blood tests and a bone marrow biopsy confirmed that I have multiple myeloma, which is currently associated with an average life expectancy of 5 years, according to Surveillance, Epidemiology, and End Results (SEER) data.1 I believe novel therapies are producing a better outlook, but this year, nearly 13,000 people will die of multiple myeloma.1
The high price of treating cancer and other diseases is unsustainable, both for patients and society.— David Mitchell
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I know how lucky I am that innovative research in my cancer over the past decade has enabled me to beat the odds. And, at 68, I’m not only beating the odds, but thriving. A balloon kyphoplasty stabilized my vertebra, enabling me to walk pain-free, and an induction chemotherapy regimen of lenalidomide (Revlimid), bortezomib, and dexamethasone (RVD), followed by lenalidomide maintenance therapy, kept me in a prolonged complete remission for 42 months.
After I started showing disease progression on lenalidomide, my physicians increased the dose and added back dexamethasone. A blood clot followed—a common side effect of lenalidomide—and I was prescribed a new combination therapy, daratumumab (Darzalex) plus bortezomib, which is keeping my disease stable.
I’m not quite in full remission on this therapy, but with the exception of some neuropathy in my hands and feet and other minor treatment side effects, I remain healthy and strong, and I’m able to live my life. As an insurance policy, I have banked my stem cells in case my current and future therapies fail to keep my myeloma from advancing and I need an autologous stem cell transplant. I hope instead that new research will keep outwitting this insidious disease and turn it into a more chronic condition or even cure it.
Breaking the Cost Barrier
Having worked in the fields of health care and public health policy for 4 decades, I understand and appreciate the effort, dedication, and financial investment it takes to develop and bring new cancer therapies to the market. Still, it is getting harder and harder to justify the continuing skyrocketing costs of new cancer treatments.
In 2011, the U.S. Food and Drug Administration approved several new exciting classes of drugs, including the immune checkpoint inhibitor ipilimumab (Yervoy) for malignant melanoma. That was also the year that the cost of these new therapies broke the $100,000 barrier. By 2014, the average cost of a new oral medication exceeded $135,000.2 This past year, tisagenlecleucel (Kymriah), a chimeric antigen receptor (CAR) T-cell therapy for the treatment of adolescent and young adult acute lymphoblastic leukemia, became the most expensive cancer therapy ever, at $475,000.
Treatment costs for my cancer are also in the six figures and, fortunately, with insurance, I can afford them. I know that isn’t true for many patients, not just with cancer but with other life-threatening and complicated diseases. The high price of treating cancer and other diseases is unsustainable, both for patients and society.
Two years ago, I decided to retire from the company I founded and launch Patients for Affordable Drugs (patientsforaffordabledrugs.org), a nonprofit organization dedicated to achieving policy changes to lower the price of prescription drugs. My decision was born out of the realization that while new innovative therapies are keeping more patients alive longer—myself included—they only work if patients can afford them.
Striking a Balance
The goal of Patients for Affordable Drugs is to lower drug prices. As one step to that end, we hope to start a national dialogue about the actual cost of developing a new drug and how its market price is determined—especially when so many of these drugs are built on initial science paid for with taxpayer funds.
Critics of what I am doing will ask, “What is a drug worth to save your life?” but that isn’t the right question. The right question is, “What is the price that maximizes patient accessibility and affordability while maintaining research and development and a fair return on the drug developer’s investment?” That is the balance we need to strike as we move toward more half-million dollar drugs.
Reforming the Health-Care System
The notion that cancer drugs are keeping me alive isn’t theoretical; it’s a fact. I’m grateful every day for the care I receive from my oncologists and nurses and for the research innovation that has allowed me to live with an incurable disease for 8 years (and, I hope, for many more years to come). But patients shouldn’t have to be held hostage by exorbitant drug prices that are becoming out of reach for so many of us.
I want to give a voice to these patients. To be successful in reforming the health-care system and driving down the cost of oncology care will take a unified effort not just by patient advocacy organizations like mine, but by the oncology and research communities and our policymakers as well.
We all have a stake in seeing this effort succeed. ■
Mr. Mitchell is President and Founder of Patients for Affordable Drugs. He lives with his wife, Nicole, and son, Samuel, in Bethesda, Maryland.
Editor’s Note: Columns in the Patient’s Corner are based solely on information The ASCO Post received from the survivors interviewed and should be considered anecdotal.
1. National Cancer Institute; Surveillance, Epidemiology, and End Results Program: Cancer stat facts: Myeloma. Available at seer.cancer.gov/statfacts/html/mulmy.html. Accessed June 26, 2018.
2. Dusetzina SB: Drug pricing trends for orally administered anticancer medications reimbursed by commercial health plans, 2000-2014. JAMA Oncol 2:960-961, 2016.