Some cancer patients must forgo life-saving drugs because they can't afford them

By Berkeley Lovelace Jr. and Meg Tirrell —

Lynn Scarfuto, a 72-year-old New York resident, spent several years working as a nurse practitioner, helping patients through their cancer tests before becoming a cancer patient herself.

Scarfuto was diagnosed with leukemia in 2012 and about six years later he was diagnosed with lung cancer.

The financial burden of treating his illnesses has not been easy.

Imbruvica, a cancer drug prescribed by her doctor, has a wholesale price of about $16,000 a month.

Scarfuto is enrolled in Medicare, but is not eligible for a low-income subsidy.

The out-of-pocket cost for the drug that would prevent his cancer from progressing is $12,000 a year. 

"How the hell are you supposed to live?"

exclaimed Scarfuto, who now relies on his retirement savings, "I don't have that kind of money."

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Scarfuto's struggle to treat his deadly illness is not unusual in the United States, where prescription drug prices are often much higher than in other developed countries.

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About one in three Americans with Medicare who don't qualify for low-income subsidies don't fill prescriptions for their cancer drugs, according to a recent study published 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.

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Out-of-pocket drug costs are too high, according to Stacie Dusetzina, the study's lead author and a professor of health policy at Vanderbilt University Medical Center.

In some cases,

to pay for their drugs, she said.

The cost is "unbelievable," Dusetzina noted.

“Not taking into account the numerous doctor visits and other treatments that patients are likely to need at the same time,” she added.

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Congress has proposed a number of changes in recent years to curb skyrocketing drug prices, though most have not been signed into law.

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Exorbitant prescription drug prices are one of the main reasons Democratic lawmakers are now said to be pushing a deal that would allow the federal government to negotiate lower offers on behalf of Medicare.

Its defenders affirm that the measure would reduce the cost of the most expensive drugs, including cancer drugs.

For cancer patients, the dilemma is especially acute because there are often few lower-cost treatment alternatives, said Nishwant Swami, a researcher at the University of Massachusetts Medicine.

In June, Swami presented data at the American Society of Clinical Oncology meeting that non-white Hispanic cancer survivors had higher rates of financial stress than white cancer survivors.

About

he added.

Researchers call

the financial burden people face after a life-threatening health diagnosis

The effects of financial distress can range from psychological, like how a person feels about themselves, to physical, like going hungry because there isn't enough money left to buy food. 

“Actually, this is a vital problem that we need to change,” Swami said.

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Right now, the negotiating process to cut costs is "a black box," said Juliette Cubanski, deputy director of the program on Medicare policy at the Kaiser Family Foundation.

One problem is the Food and Drug Administration's (FDA) 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 whose efficacy is unproven, said Zeke Emanuel, a bioethicist at the University of Pennsylvania.

Emanuel is pushing for the United States to require that the price of unproven drugs, including cancer drugs, be based on their real-world effectiveness.

“We all want a lot of new and novel treatments,” said Emanuel, a member of the COVID-19 Advisory Council during the Biden-Harris transition.

"We don't have to pay exorbitant prices to incentivize new treatments," he added.

Abbvie and Johnson & Johnson, the companies that make the cancer drug Scarfuto takes, said they were "committed to ensuring that as many patients as possible have access to Imbruvica," adding that they offered patient assistance programs that provide financial assistance to those in need of targeted therapy that treats types of lymphoma and leukemia.

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Dusetzina, of Vanderbilt University, said that while financial programs can reduce out-of-pocket costs, drug prices are still too high.

He supports a Democratic proposal that would cap Medicare Part D beneficiaries' out-of-pocket costs at $2,000.

"It's not targeted specifically at cancer treatments, but basically all drugs would be subject to this change," he said.

After the shock of her cancer diagnosis and the cost of the medication needed to keep her alive, Scarfuto learned that she is now entitled to a special grant in New York that allows her to pay $20 a month for her medication.

She knows that others are not so lucky and points out that some patients skip or ration their doses.

Many people

concluded.