HEALTH

Breast cancer costs linger for many women as Medicare falls short

Patricia Anstett
Special to the Detroit Free Press

Devastated, tired and still in some pain after a mastectomy and radiation last fall, Jacqueline Abdelmeguid lives wondering how long it will take to regain her health. Hopefully it’s soon.

But she fears it will take her years to pay the medical bills that keep coming, perhaps for the rest of her life, just to make sure her breast cancer doesn’t return.

She holds up her phone and scrolls through her Corewell Health medical chart to show a note in cursive telling her: You owe $4,122.89.

“I skip over it real quickly because it makes me sad,” said Abdelmeguid, 65, who is on unpaid medical leave from her 30-year Postal Service job. She owes two months’ rent on the Oak Park home where she lives with her husband, a recent immigrant from Egypt, two daughters and her grandson, 15.

Jacqueline Abdelmeguid, 65, of Oak Park, sits outside the home she's been renting for 12 years as she talks about the financial struggles of dealing with cancer in Oak Park on Friday, March 23, 2023.

Medicare can fall short by thousands of dollars

Older women who, like Abdelmeguid, struggle with the financial burden from their breast cancer care, are a poorly recognized part of a serious American health care problem that leaves millions of Medicare recipients with out-of-pocket expenses that strain and even bankrupt them.

Many are shocked to find their Medicare insurance — including popular Part C and D plans — can leave them financially vulnerable for thousands of dollars in co-pays for medicines, doctor visits and hospitalization.

“Some people think, 'Oh, you’ve got Medicare. It’s a get-out-of-jail-free card.' But it’s not,” said Dr. Reshma Jagsi, an Emory University radiation oncologist among the first researchers to study financial problems among breast cancer patients, in a large study in 2014 in Detroit and Los Angeles.

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Research about the burden of medical bills, known as financial toxicity, has focused mostly on people younger than 65, in part because they do not have the almost universal coverage that people 65 and older have through Medicare.

Only 1%  of the U.S. population, some 350,000 who are 65 or older, have no Medicare coverage, including many undocumented immigrants. About 9% of Medicare’s 61 million current beneficiaries have only the barest of coverage, and are faced with large medical debts if they develop chronic problems requiring more doctor visits, prescription medicines and testing.

But a six-month investigation of older women with breast cancer, a project funded through three national organizations, found breast cancer patients with more comprehensive Medicare plans struggling to pay bills, relying on strained financial assistance programs.

Assistance programs can be spotty and burdensome

Help from hospitals and nonprofits may not be offered because doctors may never ask, and hospitals may not use screening tools and questionnaires to find out who needs help.

What help is available is scattered and even can dry up temporarily because some organizations run out of money and must put applicants on wait lists. With or without help from social workers, women scramble to assemble needed documents like tax returns and bank statements to apply for grants to help pay household or medical expenses, mortgages and costly prescription drugs. Others raise money through online platforms or events like church spaghetti dinners.

Left with tough choices to put food on the table, gas in the car or pay a medical bill, as many as 30% of patients do not fill a prescription for a cancer drug, according to an April 2022 study in the journal Health Affairs. Health care costs are the top cause of bankruptcy filings in the United States, as well as being the most common reason for online fundraisers.

Others go without food or skip medical appointments, compromising their health. Some decline unaffordable treatments that could be lifesaving.

Jane Monstrola, 69, of Irwin, Pennsylvania.

Jane Monstrola, 69, of Irwin, Pennsylvania, said she would have told her daughter “I’m done’’ without outside help she received from fundraisers and advocacy groups.

“It was just co-pay after co-pay,” said Monstrola, who underwent chemotherapy and a double mastectomy in 2020. A mother of two, she hopes to return to her part-time, minimum wage job at a card shop that helps pay the family’s bills.

Breast cancer patients are particularly vulnerable to developing financial problems because they must undergo several types of treatment and years of follow-up, explained a Feb. 8 editorial for the Journal of the American Medical Association’s JAMA Online.

“Compared with other chronic conditions, patients with cancer are at risk for higher out-of-pocket expenses,” the editorial said. “Breast cancer care in particular may be associated with high financial toxicity given the need for screening and diagnosis, multidisciplinary care and longitudinal follow-up; notably gender affects financial security.”

Medicare's vital role for women

A Medicare debate unfolding in Congress about the nearly 50-year-old program is particularly important to women, who outlive men and account for 54% of Medicare’s 61 million recipients. The program’s enrollment will grow to 80 million older or disabled adults by 2030.

Breast cancer, the most common tumor in American women, also is a disease of aging. One in 5 women 70 and older get breast cancer, compared with 1 in 43 for women ages 40-50.

For these older women, Medicare is a lifeline. They often don’t have health and pension benefits as good as men’s plans. Retirement benefits may be smaller because they moved in and out of the paid workforce, raising families and serving as family caregivers. Others worked in part-time, lower-paying jobs without benefits or never had a life partner with benefits upon the partner’s death.

As potential congressional debate on Medicare looms, the White House already has issued several statements advocating changes to lower Medicare out-of-pocket costs, as well as the opposition it expects from Republicans.

Marianne Udow-Phillips

Medicare always has had noticeable gaps and shortfalls, and often has been considered less generous in coverage than employer-sponsored insurance, said Marianne Udow-Phillips, a University of Michigan health insurance expert and former executive at Blue Cross Blue Shield of Michigan.

High-deductible plans can lead to big bills

The average Medicare beneficiary spent $3,024 on out-of-pocket costs in 2017, according to a survey by the Commonwealth Fund, a New York health advocacy foundation. A cancer diagnosis can bring even greater financial challenges, with some drugs costing $20,000 or more a year.

High-deductible plans requiring policyholders to first pay set amounts, starting every Jan. 1, before their insurance begins to cover care, also contribute greatly to out-of-pocket spending on health. These plans are particularly popular among younger people, but older ones bought them for the same reason: They were willing to take a chance they wouldn’t get sick in exchange for a low monthly premium.

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The Internal Revenue Service, which sets limits each year on what insurers can charge, defines a high-deductible plan as one beginning at $1,500 for a person to $3,000 for a family, though a plan can require some policyholders to pay deductibles as much as $7,500 for a single person and $15,000 for a family in total yearly out-of-pocket costs.

Spending even $1,000-$2,000 can cause worry and sacrifice, along with a reduced quality of life and lower satisfaction with cancer care, says the American Cancer Society. A 2019 Federal Reserve Board analysis reported that 40% of Americans do not have $400 in the bank.

Pat Kreple, 76, a mother of three from Stanwood, near Big Rapids, typically a rock in her family, admits she “freaked out’’ when she got a bill “on the three-week anniversary of my mastectomy last November.”

“I couldn’t sleep at night. I mean, I would lie awake and go, oh, my gosh, we’re going to have to put this on credit cards. How are we ever going to pay this off?”

Pat Kreple, 76,of  Stanwood, near Big Rapids, sits with a pile of bills.

She reluctantly accepted gas money and a mortgage payment from her kids. “You never want to ask for help, but I had no choice,” said Kreple, a caregiver for her husband, a retired truck driver with early-stage dementia.

Kreple found an ally in a hospital social worker at Corewell Hospital in Grand Rapids, who insisted she notify her about any financial need that arose. She told her about several programs and helped her apply for them, including a $500 Meijer grocery card from the New Day Foundation in Rochester Hills. “Holy cow, we almost spent the entire thing in one day,” Kreple said. “We need food, toilet paper, shampoo, everything.”

Marilyn Collins, 68, of Waterford, considers the financial stress she faced after her February 2022 breast cancer diagnosis to be “very comparable" to the shock of learning she had an aggressive form breast cancer. She finally returned to work this February at a Waterford Buick dealership, where she is a customer service coordinator, because she developed an infection from a painful skin problem following surgery.

Marilyn Collins, 68, of Waterford at her home on Tuesday, March 21, 2023.
Collins was diagnosed with breast cancer in February of 2022 and was under considerable financial stress after she found out she had a more aggressive breast cancer that required radiation. 
With continued medical bills piling up she found various patient assistance funds, including The Pink Fund, a Southfield, MI non-profit that gives money to to pay non-medical bills of women and men currently in breast cancer treatment. Collins received a grant from them which helped her out.

As her bills mounted, she went online and found various patient assistance funds, including the Pink Fund, a Southfield nonprofit that gives up to $3,000 to pay nonmedical bills of people during their breast cancer treatment. It helped Collins pay bills for three months, bringing her immense relief. A McLaren Oakland Hospital social worker in Pontiac helped further and gave her the name of an affiliated Karmanos Cancer Institute financial counselor who took the time to come to her home to talk to her and her daughter.

With his help, she applied for a break on her medical bill and was surprised to learn in February that McLaren wrote off one entire $5,000 bill.

Patients should speak up about financial needs

Advocates tell patients to speak up because they never may be asked if they need help otherwise.

Only 50.9% of medical oncologists, 43.2% of radiation oncologists and 15.6% of surgeons said someone in their practice often or always discussed finances with patients, according to a 2018 study by The American Cancer Society.

“Doctor-patient talks that address the risks and benefits of treatment should include financial toxicity, so that women can reflect on what matters to them and make a decision that’s right for them,” Emory’s Jagsi said. “We’ve reached a point of awareness of the problem but we have not identified an effective intervention that can be widely disseminated. … These efforts are in their infancy.”

Joanna Morales, executive director of Triage Cancer, a national nonprofit that provides free legal and practical help to people with cancer and their caregivers, also recommends asking pharmacists “is there a way to lower my co-payment? Often there is but if people don’t ask the question they are not going to get the information.’’ The majority of 3,000 people who used the nonprofit’s financial navigation resources in 2022 are 60-70 years of age, mostly women, some still working, she said.

“You need to ask early and often,” said Molly MacDonald, a breast cancer survivor who founded the Pink Fund in 2006, after she faced unpaid bills, a nearly empty refrigerator and five hungry children while she looked for a new job.

“Sometimes, you don’t ask soon enough. Sometimes, you don’t ask until you are really in trouble. Your circumstances and situation may change. Don’t be ashamed to ask. It’s far better to see what’s available than facing a medically related bankruptcy or stop payments.”

The fund distributed more than $1 million grants last year. Its “Chemo or Car Payment” social media campaign goes straight to the financial burden issue.

A $1,800 spaghetti fundraiser

Monstrola’s daughter Megan Remaley threw fundraisers and started an online Facebook page campaign, Jane’s Journey. A University of Pittsburgh Medical Center social worker provided some leads for resources but none like the advice she got from a relative and longtime cancer survivor, Remaley said. “What sucks is if you don’t ask, you aren’t told,” Remaley said.

Remaley raised $1,800 at one spaghetti fundraiser at her church, First United Methodist Church of Irwin. Friends and total strangers brought food, cards, lotions. A local wig shop offered discounts. Members of a group called Cancer Angels called Monstrola a few times a week. “The reaction was truly inspirational,” Remaley said.

Patient assistance leaders acknowledge that limited funds and donations mean that many restrict help to the neediest. The applications may require banking statements, income tax forms, hospital treatment dates and other verifications. Or they limit funds to those who are in families, can show a loss of working income and other stipulations — all for what may be a few hundred or few thousand dollars.

These financial assistance programs also may close temporarily for lack of money. “The need out there is great. We have wait lists for all our programs,” said Amy Niles, chief advocacy and engagement officer at the PAN Foundation, in a March interview. Medicare recipients comprise the “overwhelming majority’’ of their applicants. The fund is a particularly vital one for cancer patients faced with expensive new cancer drugs; its average grant is $5,700 for prescription medicines.

So needed is the organization’s breast cancer assistance that Jerilyn Arneson, an oncology pharmacist and financial navigator, wrote in a Pink Fund blog: “When I get a text saying that the breast cancer premium fund is open, I pull off the side of the road and use my hotspot to enroll’’ a patient. “It’s that competitive.”

Changes coming

Changes indeed are coming to bring some costs down, through a new federal law, tweaks in the design of Medicare insurance policies and pressure from regulatory agencies for hospitals to improve identification and help for people facing big medical bills.

The biggest change comes in 2025, when Medicare will cap at $2,000 all out-of-pocket spending on drugs by Medicare beneficiaries with Part D drug plans, a law advocates hope insurers will extend to other Medicare plans.

Other provisions under the Inflation Reduction Act of 2022 will expand a Medicare subsidy program for low-income Medicare recipients in 2024.

Dr. Nancy Keating, a Harvard University physician helping evaluate Medicare’s cancer coverage, said Medicare “does a pretty good job of covering care if you have to be hospitalized. But Medicare often “doesn’t do a very good job’’ for patients facing chemotherapy or outpatient surgery, she said.

She currently is evaluating a new Medicare oncology payment system and “one of the requirements’’ is that hospitals must talk with patients about the expected out-of-pocket costs for treatments. She favors tying Medicare spending to the most proven therapies, an approach also advocated by Dr. A. Mark Fendrick, a leader in an approach gaining more interest of late.

Fendrick wants the entire breast cancer screening process to be free, instead of insurance just paying for an initial screening mammogram, as some do. The Biden administration recently implemented such a policy for the entire colon cancer screening process, Fendrick said.

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“We can do this if we want,” said Fendrick. “We did it for COVID. We provided free tests and it helped improve outcomes. It makes no sense to place a financial burden of those women likely to benefit from early detection and treatment for breast cancer. Not being able to complete the screening undermines the entire reason we screen in the first place.”

Starting this year, hospital systems also face subtle pressures from a regulatory agency and federal advisers to do more to identify patients who need financial help and can get the help to them.

Dan Sherman, a cancer financial services navigator and leader in the field, wants to see hospitals hire more trained financial counselors to find government, pharmaceutical or other subsidies to cut bills. Now, too many have thin staffs, without sufficient training to understand how to enroll older adults in Medicare subsidy programs that reduce costs for both patients and the hospital.

“Seventy percent of the time they have never heard of these programs,” he said of hospital financial assistance staffs. Health care needs to “professionalize the role and standards” to expand this career path of financial counselors and improve hospital programs, said Sherman, founder and president of The NaVectis Group, a health care navigation firm based in western Michigan.

He said he “scratches his head’’ reading academic literature about the financial toxicity problem because so much of it is focused on people 64 or younger when in fact “I spend the vast majority of my time with people on Medicare, specifically Medicare Advantage (Part C) which covers 40% of the market,’’ he said.

He and other leaders advise older adults to consider Medicare Supplemental (Medigap) plans because they believe they provide better coverage for people who have chronic conditions. Medicare Part C proponents disagree, saying the popularity of the plans underscore consumer satisfaction with them.

Oncology pharmacist Arneson is co-founder of a new organization, the National Association of Medication Access and Patient Advocacy. She wants to see health systems hire more people trained as medication access coordinators, a new job title in development as a broader career, to find resources to pay for drugs and process prior authorization requests before payments are made.

Other advocates hope new initiatives will better unite a largely uncoordinated patient assistance network that makes it tough for patients and advocates to find help.

“Right now, it’s they’re over there and we’re over here and we’ll call you when we need you but I won’t collaborate with you,” said Gina Kell Spehn, chief executive officer of the New Day Foundation, which gives an average $2,800 grant to qualifying families, as well as gift cards from companies like Kroger and Meijer. She worries that hospitals, understaffed during the pandemic and facing major financial challenges, will consider the issue “the least of their problems.”

(Left to right) New Day Foundation co-founder and president Gina Kell Spehn talks with program director Cheryl Warstler and program specialist Jenny Moeller during a weekly cancer family support planning meeting at their office in Rochester Hills on Tuesday, March 23, 2023.

Michigan’s Health and Hospital Association, which oversees most of the state’s hospitals, said in a statement that its hospitals follow voluntary billing guidelines established in 2020 by the American Hospital Association. It referred several other questions to member hospitals.

Corewell Health and Henry Ford Health, two of Michigan’s largest health systems, said in emails and interviews that they have improved financial assistance programs to identify and help patients in recent years.

At Corewell cancer programs in its West and Southwest division, an oncology social worker meets all newly diagnosed patients at the start of treatment and is available throughout treatment for help, including from financial navigators, including a certified financial planner, said a statement from the health system in response to a reporter’s questions.

Corewell East’s Royal Oak hospital uses a national screening tool and those registering financial need are referred to oncology social worker Stephanie Liu, whom several patients interviewed said they found very helpful.

“Thinking about cost isn’t like the first thing they think of because they just want to start treatment,” Liu said. “Then, after processing it a little bit, seeing what’s actually going on, I think that’s when they finally realize it’s joining to be an expensive journey.”

Liu helps patients apply for funds, as well as refer them to financial counselors at the hospital. She tells women, “If you have any questions or need any assistance completing the forms, I’m more than welcome to sit down with them to complete it.’’

Still, the hospital’s chief breast surgeon, Dr. Nayana Dekhne said: “We could do a better job. That’s the way I’d put it. We have a system but it’s not systematic.’’ The help the hospital provides is “patient-driven,” she said.

Danielle Nelson, director of supportive oncology services for Henry Ford Health, said Ford supports ways to improve hospital financial navigation programs through its social workers, financial counselors and community health workers.

“We absolutely believe that a part of providing comprehensive cancer care is supporting the financial health of our patients,” she said.

Now, her team faces a growing need. “There’s not a minute of the day when there’s not a need for them,’’ she said. "We’d welcome any additional help. There are a lot of resources out there. Figuring out how to identify them and navigate them is very challenging for patients to do alone.’’

This story was funded through a journalism fellowship from The Gerontological Society of America, The Journalists Network on Generations and the The NIHCM Foundation.

Patricia Anstett is former medical writer for the Detroit Free Press and author of “Breast Cancer Surgery and Reconstruction: What’s Right for You,’’ a book on breast cancer surgery options.