Nearly a decade of battling cancer has left Wayne Morin feeling wiped out. Diagnosed with non-Hodgkin’s lymphoma in 2012, he eventually had to give up driving a concrete truck.
“Pretty much I was tired all the time. I can’t do anything,” said Morin, who blames his incapacitation on the cancer and treatment, which included chemotherapy. “[It’s] depressing that I can’t be the way that I used to be.”
As if that weren’t enough, Morin and his wife, who live in the small town of West Warren in central Massachusetts, have faced another relentless, overwhelming pressure since his diagnosis: money. Cancer is not cheap. It’s slashed the couple’s income, and they’ve struggled to pay the bills. As Kathy Morin put it, “Financially it kills you.” And that’s with health insurance.
Morin was prescribed the cancer drug Revlimid (lenalidomide), which costs $21,000 a month. Of that, insurance was going to cover just over half, with the Morins expected to handle the rest. That works out to about $10,000 for 28 pills designed to slow or stop the growth of his cancer, and there was no way they could swing it.
Fortunately, Kathy Morin had been speaking with a hospital social worker about patient assistance options. Had the social worker not put the Morins in touch with the drug manufacturer -- Celgene Corp., a subsidiary of Bristol Myers Squibb -- Wayne Morin might not be here to tell his story. The company picked up his entire tab for Revlimid through its patient assistance program.
Advocates say asking to speak with a social worker at the medical facility where treatment is taking place (if one hasn’t already been provided) can be a lifeline to affordable care.
The Morins are far from alone in facing financial hardship after a cancer diagnosis. Without some sort of assistance, many patients never get the cancer care they need or drugs they’re prescribed.
A pilot study of insured patients published in The Oncologist found that out-of-pocket costs kept 24 percent from filling any of their prescriptions for cancer drugs. Another 19 percent only filled some prescriptions. And 20 percent took less medication than prescribed.
Researchers at the University of Pennsylvania’s Leonard Davis Institute of Health Economics came to a similar conclusion. Their research found a third of patients who would have paid $100 to $500 out of pocket failed to obtain a new prescription for an oral cancer drug. Almost a full half of patients “abandoned,” or didn’t pick up, their insurance-approved oral medication when the out-of-pocket cost for it rose past $2,000.
For most cancer patients, going without treatment is not a realistic -- or wise -- option. That includes treatment deemed experimental and not covered by insurance at all. Yet many must do just that, with sometimes dire consequences. One study published in a leading medical journal called BMI found that for every month cancer treatment is delayed (for any reason), the risk of death increases about 10 percent.
"People should not be dying because they can’t afford their meds,” said Nancy Novack, a survivor of late-stage ovarian cancer who lives in Austin, Texas, and founded Nancy’s List, which compiles financial resources for patients.
For her part, Novack sends patients who can’t afford their medications to NeedyMeds. The nonprofit can connect patients to some 30,000 programs that provide everything from free medications to help with transportation to treatment.
"It’s a tough time for people, and they should not have to worry about finances," said Dr. Richard Sagall, president of NeedyMeds.
Specialists there work to match patients with resources, so patients aren’t left on their own to fill out forms for assistance programs that may or may not provide the help they need. The website gets 10,000-plus visitors a day, and as many as 6,000 people call the organization’s toll-free number each month.
Novack faced her own financial challenges when undergoing treatment. She says she learned how to negotiate bills with doctors and hospitals, but knew nothing about assistance programs at the time. Still, it was the plight of others also receiving treatment that struck her most.
“I would ask them what they were worried about,” Novack said, “and they talked more about their financial situations than they did about living and dying.”
For Morin, both of those are real concerns. The Revlimid he needs costs upwards of $250,000 a year, before insurance. Other oncology drugs can cost several times that. Three of the 10 most expensive drugs in the United States today are cancer drugs, according to GoodRX, and range from $700,000 to almost $1 million a year for a typical course of therapy.
“It’s major anxiety,” said Kathy Morin, a court stenographer who handles the couple’s finances. “You’re stressed out. How am I going to do this? How am I going to tell him he can’t go on a medication because [we can’t afford it]? I know I wouldn’t want someone to tell me that.”
With her husband unable to work, Kathy Morin has become their sole support. And the bills are piling up. Now that they’ve lost his employer-sponsored insurance coverage, premiums alone run almost $2,000 a month. Even with a friend’s help, they have faced hard financial choices.
“Many families … have to decide if they get treatment or put food on the table,” said Cheryl Warstler, programs director at New Day Foundation, a nonprofit in Rochester Hills, Mich., that helps cancer patients with living expenses. “In addition to the cost of many treatments, the side effects can impact whether they can go to work or not.”
Cancer can quickly deplete the bank accounts of patients who find themselves suddenly unable to work or with steep out-of-pocket expenses they mistakenly thought their health insurance would cover. It can also take time to match a patient’s diagnosis and needs with the financial resources.
But there is help. That can include money to cover chemotherapy, as well as related treatments, and non-medical expenses such as utilities and transportation.
Among the resources:
Patients who can’t afford their medications should talk to their doctors. Discuss alternative options such as generic drugs or other courses of treatment. Ask to be assigned a social worker or case worker. Advocate for yourself.
“It’s very important for patients not to be embarrassed about the financial side of their treatment,” said Dan Klein, president and chief executive officer of the PAN Foundation, a Washington, D.C.-based nonprofit that helps insured patients with chronic, rare and life-threatening diseases pay for their prescriptions.
Asking for help can mean the difference between beating back cancer or being beaten by it. Patients today are often battling on two fronts: medical and financial. Asking for help can mean the difference between beating back cancer or being beaten by it. Be persistent. Advocate.
“What I’ve said to people is if somebody says no, you find somebody who says yes,” Novack said. “You just keep going … you do not stop.”
Michael Schroeder is a freelance health writer and editor based in Westfield, Indiana.
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