Lester “Les” Polonsky wants his elected representatives in Congress to know that urgent reform is needed now to ensure people with serious and chronic conditions don’t have to make impossible trade-offs to pay for treatment.
Tackling his diagnosis head-on
Before COVID-19 quarantines consumed Manhattan in 2020, Lester “Les” Polonsky, enjoyed spending his Tuesdays at a modified aerobics class for people with multiple sclerosis (MS), offered by the National Multiple Sclerosis Society’s local chapter.
Not only did the weekly classes help Les stay agile, it also brought him closer to a community of individuals who were, like him, living with and managing multiple sclerosis. The group liked to socialize and compare experiences with symptoms, medications, and doctors.
I like to think that I have MS; that MS does not have me.Les Polonsky
The price of a ‘miracle’ for Les
While the aerobics class is on hold for now, Les is hopeful to get back to it someday. In the meantime, he’s staying active by babysitting his three young grandkids—all under the age of 8—alongside his wife, Helene.
Les credits his level of activity to a medication that he refers to as a “miracle.”
A rabbi who served for 32 years before retiring, Les was diagnosed with MS in 2006. At the time, he struggled with “dropped foot,” in which his foot would “drop” or drag before he could lift it high enough to make a full step. In people with multiple sclerosis, this is sometimes caused by a poor nerve connection between the brain and legs, and it always increases the risk of falling.
“I was falling, quite frequently, as I was walking,” recalled Les, describing how the condition prompted his doctor to prescribe the aforementioned “miracle” medication that alleviates this symptom.
Advocating for lower out-of-pocket costs to maintain health
The problem with Les’ miracle medication is that it doesn’t come cheap.
His copay is nearly $600 each month, “which is quite substantial considering my wife and I are both retired and living on social security,” said Les, who has Medicare Part D for his prescription drug coverage.
According to Les, “everything was going well for the first few months, and then I get a bill for $600 and I didn’t understand why…I had reached a certain level [for my coverage] and that was now the new copay, which put me in such a bind.”
If not for an annual grant from the PAN Foundation to support his out-of-pocket medication costs, Les said: “I can’t even begin to think about what things we would not be able to do. And how much I would not be able to enjoy my grandkids. It’s just inconceivable.”
The trade-offs in healthcare that policymakers should know
Beyond his medication copays, Les and his wife’s biggest expense is their monthly mortgage.
High out-of-pocket costs lead to dire implications or trade-offs for Les and other patients like him. “Do I pay the copay and not pay the rent? Do I pay the copay and not feed my family? These are very important, significant choices,” Les emphasized. “It would just be a real breath of fresh air that I didn’t have to worry about the copay and could focus more on the symptoms and the medication that is taken to cure those symptoms.”
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