Lynn Scarfuto (72), a New Yorker, worked as a nurse navigator for several years, helping patients with their cancer journeys. She then became a patient.
Scarfuto was first diagnosed with leukemia back in 2012. Six years later, he was diagnosed with lung cancer.
It has been difficult to pay the financial costs of her illness. Imbruvica is a prescription for cancer medication that her doctor prescribes at a wholesale cost of approximately $16,000 per month. Scarfuto is a Medicare beneficiary, but she doesn’t qualify to receive a subsidy for low income. The $12,000 she spends annually on the drug that would prevent her cancer progression is out of pocket.
“How in the hell are you supposed live?” Scarfuto said Scarfuto now depends on her retirement savings. “I don’t have that amount of money.”
Scarfuto’s struggles to manage her life-threatening illness are not uncommon in the U.S., which has higher prescription drug prices than other developed countries.
According to a study published in Health Affairs, about one third of Medicare beneficiaries who do not qualify for low income subsidies for cancer drugs don’t fill their prescriptions. According to the Social Security Administration, low income is defined as a person earning less than $15,000 per year or $30,000 for a married couple.
Stacie Dusetzina is a Vanderbilt University Medical Center health policy professor and the lead author of the study. She said that the out-of-pocket cost for drugs is too high. She said that in some cases patients would have to spend nearly half of their gross income to afford their medication.
She said that the cost was “unbelievable.” “Never mind the many doctor’s visits and other treatments that patients may need simultaneously.”
Over the years, Congress has suggested a variety of changes to lower skyrocketing drug prices. However, most of these have not been implemented into law.
The exorbitant prices of prescription drugs are one reason Democratic lawmakers are now pushing for a deal that would allow Medicare to negotiate lower rates. The move, according to proponents, would lower the price of most expensive drugs including those for cancer.
Nishwant Swaami, a researcher at University of Massachusetts Medical, stated that cancer patients are often faced with a difficult dilemma because there are few low-cost options.
Swami presented data to the American Society of Clinical Oncology in June. It was revealed that non-white Hispanic survivors of cancer in the U.S. had higher levels of financial stress than those who survived white cancer. He said that 70% of Mexican Americans reported that they couldn’t afford their expenses.
Researchers call financial toxicity the economic burden that people experience after receiving a life-threatening diagnosis. Financial distress can have a variety of effects. They can affect how people feel about themselves and their ability to buy groceries.
Swami stated, “It is fundamentally a living issue that we really must be changing.”
Juliette Cubanski (deputy director, program on Medicare policy, Kaiser Family Foundation) stated that the negotiation process for lower costs is currently “just completely black box”.
The Food and Drug Administration’s accelerated review program for new drugs with cancer is a problem. According to Zeke Emanuel, University of Pennsylvania bioethicist, the program allows drugmakers on average to charge drugmakers tens of thousand of dollars per month for experimental drugs that have not been proven to work. Emanuel wants the U.S. government to demand that unproven drugs, such as those for cancer be priced based on their actual effectiveness.
Emanuel, who was a member of the Covid-19 advisory board during the Biden/Harris transition, stated that “We all want lots and new treatments and novel treatments.” To encourage new treatments, we don’t need to pay high highway robbery rates.
Johnson & Johnson and Abbvie, which make Scarfuto, stated that they are “committed” to ensuring that as many patients as possible have Imbruvica. They also offered financial assistance programs to help those who require the targeted therapy, which treats various types of lymphoma and Leukemia.
Dusetzina of Vanderbilt University said that while financial programs can reduce out-of-pocket expenses, drug prices remain too high. She supports a Democratic proposal to cap prescription drug out of pocket costs for Medicare Part D beneficiaries at $2,000, according to Dusetzina.
She said that although it is not specifically geared towards cancer treatments, “it would affect all drugs.”
Scarfuto was shocked to learn that she is eligible for a New York special grant, which allows her to pay $20 per month for her medication. Scarfuto knows that not everyone is so fortunate, and she notes that some patients have to ration or skip their medication.
She said that many people don’t want to live broke.
