Lynn Scarfuto, 72, lives in New York and spent several years working as a nurse navigator, helping patients through their cancer trials before becoming a cancer patient herself.
Scarfuto was diagnosed with leukemia in 2012 and about six years later, she was diagnosed with lung cancer.
The financial burden that comes with treating her illnesses has not been easy. Imbruvica, a cancer drug prescribed by her doctor, has a wholesale price of about $16,000 per month. Scarfuto is on Medicare but does not qualify for a low-income grant. Her out-of-pocket cost for the drug that would prevent her cancer from progressing is $12,000 a year.
“How the hell are you supposed to live?” said Scarfuto, who now relies on her retirement savings. “I don’t have that much money.”
Scarfuto’s struggle to treat her life-threatening illness is not uncommon in the US, where prescription drug prices are often much higher than in other developed countries.
About one in three Americans on Medicare who don’t qualify for low-income grants don’t fill prescriptions for their cancer drugs, according to one recent study in the journal Health Affairs† Low income is defined as about $15,000 a year for an individual or about $30,000 a year for a married couple, according to the Social Security Administration.
The cash costs for the medicines is too high, said Stacie Dusetzina, the study’s lead author and professor of health policy at Vanderbilt University Medical Center. In some cases, patients would have to pay nearly half of their gross income to pay for their medications, she said.
The price is “incredible,” she said. “Don’t think about the many doctor visits and other treatments patients are likely to need at the same time.”
Congress has proposed a number of amendments in recent years to curb skyrocketing drug prices, though most of them have not passed into law.
Exorbitant Prescription Drug Prices Are A Major Reason Democratic Lawmakers Would Be Now push a deal forward that would allow the federal government to negotiate lower deals on behalf of Medicare. Proponents say the move would lower the cost of the most expensive drugs, including cancer drugs.
For cancer patients, the dilemma is especially dire because there are usually few cheaper treatment alternatives, said Nishwant Swami, a researcher at the University of Massachusetts Medical.
In June, Swami presented data at the meeting of the American Society of Clinical Oncology who found that nonwhite Hispanic cancer survivors in the US reported higher rates of financial stress than white cancer survivors. About 70% of Mexican Americans in particular reported being unable to afford their expenses, he said.
Researchers call the economic burden people face after a life-threatening health diagnosis “financial toxicity.” The effects of financial distress can range from psychological, such as how a person feels about themselves, to physical, such as going hungry because there isn’t enough money left to buy groceries.
“It’s really a life issue that we really need to change,” Swami said.
Right now, the negotiation process for lower costs is “just a black box,” said Juliette Cubanski, deputy director of the Medicare policy program at the Kaiser Family Foundation.
One problem lies with the Food and Drug Administration’s accelerated approval program for new cancer drugs. The program allows drugmakers to charge an average of tens of thousands of dollars a month for experimental drugs that have not been proven to work, said Zeke Emanuel, a bioethicist at the University of Pennsylvania. Emanuel urges the US to charge the price of unproven drugs, including those for cancer, based on their actual effectiveness.
“We all want a lot of new treatments and new treatments,” said Emanuel, a member of the Covid-19 advisory board during Biden’s transition to Harris. “We don’t have to pay exorbitant highway robberies to stimulate new treatments.”
Abbvie and Johnson & Johnson, the companies that make the cancer medications Scarfuto uses, said they were “committed to making sure as many patients as possible have access to Imbruvica,” adding that they offered patient assistance programs that provide financial assistance to those who need it. targeted therapy that treats types of lymphoma and leukemia.
Dusetzina, of Vanderbilt University, said that while financial programs can reduce out-of-pocket costs, drug prices are still too high. She supports a Democratic proposal that would limit the out-of-pocket cost of prescription drugs to Medicare Part D beneficiaries to $2,000.
“It’s not specifically aimed at cancer treatments, but basically all drugs would be subject to this change,” she said.
After the shock of her cancer diagnosis and the cost of the drugs needed to keep her alive, Scarfuto learned that she is currently eligible for a special grant in New York that will allow her to pay $20 a month for her medication. She knows others aren’t so lucky, noting that some patients skip or ration their doses.
Many people “don’t want to go broke,” she said.