Dr. Robert Fowler, professor emeritus of religion, recently had a chance to address a U.S. House of Representatives subcommittee on health.
More than 13 years ago, Fowler was diagnosed with a rare and incurable blood cancer called multiple myeloma. This cancer corrupts the patient’s bone marrow, manifests idiosyncratically in aches and pains, and threatens the structural integrity of a patient’s bones over time.
Fowler considers himself to have good fortune surviving as long as he has, as many people who share his diagnosis “are not so lucky.” While his condition is incurable, the symptoms can be treated with specialty drugs such as Revlimid, which Fowler has been using since the summer 2009.
In his September testimony, Fowler informed the committee that a year’s supply of his drug costs $240 to produce, but the list price for a year’s supply is nearly $200,000.
“Although the out-of-pocket costs were affordable to me, I estimate my employer’s medical insurance plan paid approximately $1.4 million [over 10 years] to cover the drug on my behalf,” Fowler said.
Sam Ramirez, BW’s vice president for human resources and payroll services, said that he is unable to comment on any medical issues regarding current or former employees due to HIPPA privacy laws. However, he was able to share that at times, a few medical situations can end up being a large percentage of the total prescription expenses for the university.
“Prescription drug costs are becoming a bigger percentage and dollar amount in terms of total costs,” said Ramirez.
Baldwin Wallace has a self-insured healthcare plan which has weekly assessment and payment of actual costs. These costs are distributed between the university and employees at a ratio of roughly 80 to 20.
“The underlying philosophy that I have is that if people need a medication to assist them with their medical issues, we want to make sure that they’re able to afford and take it,” said Ramirez.
Fowler said, “I resisted telling people at BW how expensive I was. I am very grateful that BW’s insurance kept me alive. It is a very funny feeling to know you’re on the other of generosity from people who may not realize that they are being generous.”
Fowler’s opportunity to speak to Congress was provided by a bipartisan lobbying firm known as Patients for Affordable Drugs. David Mitchell, the organization’s founder, shares with Fowler both a multiple myeloma diagnosis and a strong desire for change in the cost structure of prescription drugs in the United States.
“We have a horribly broken system. Everyone seems to agree on that much; Democrats, Republicans, everyone,” said Fowler.
Fowler explained that from the time he began taking Revlimid, until the time he retired from teaching in 2019, the cost of the drug had gone up over 100%, despite the drug being the same, both in terms of cosmetics and formula.
In his testimony before the committee, Fowler said, “Revlimid was the costliest drug in the Medicare Part D prescription drug program, draining $3.3 billion from taxpayers’ bank account in 2017 alone.”
Fowler said, “The fascination and anger over drug prices is a result of my experience. But once you have it and you see other people experiencing the same difficulty, those stories stand out to me.”
While the September testimony represented Fowler’s first foray into Washington as a national drug pricing advocate, he had already been approached by the Patients for Affordable Drugs to speak in front of the Ohio House Government Accountability and Oversight Committee in the Spring 2020.
Despite dealing with some side effects from his medication, Fowler admitted he occasionally forgets that he is a cancer patient.
He said that his condition “sharpened my awareness of my mortality. I think about things that I assume a lot of people don’t have to think about. But I still think the universe is friendly. I don’t think God is out to get me.”
To this day, Fowler wears a wristband from the International Myeloma Foundation, which reads “memento mori” or remember you must die. He views it as both a reminder and a continuous call to action.
Fowler ended his testimony in September by saying, “I want to live many more happy years in spite of my blood cancer. To have a shot at that, I need two things: life-saving drugs at an affordable price. We can have both.”