XRAYS - Making Sense of Cancer Headlines

FORCE’s eXamining the Relevance of Articles for Young Survivors (XRAYS) program is a reliable resource for breast cancer research-related news and information. XRAYS reviews new breast cancer research, provides plain-language summaries, and rates how the media covered the topic. XRAYS is funded by the CDC.

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The cost of cancer care and impact of financial hardship on treatment


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XRAYS:  Making Sense of Cancer Headlines

Summary:

Several recent studies on the cost of cancer care show the negative effects on cancer patients. In this XRAYS we review a recent article by Kaiser Health News and associated studies about the financial impact of breast cancer treatment and cost of precision medicine. (2/8/19)

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Contents

At a glance What does this mean for me?
Cost of care                             Questions to ask your doctor          
Medicare Resources and references


ARTICLE AT A GLANCE

This article is about:

The financial impact of cancer treatment.

Why is this study important?

Financial burden is substantial for people being treated for cancer. Cost of care often affects health care decisions in ways that may impact survival.

Cancer care is expensive

Many cancer patients find that paying for cancer treatment is a major hurdle. There is growing recognition of the financial toll cancer has on individuals and families.

The Agency for Healthcare Research and Quality (AHRQ) estimates that direct medical costs for cancer were about $80 billion in the U.S. in 2015.

A 2018 study published in the American Journal of Medicine by Adrienne Gilligan and colleagues looked at the impact of cancer on finances. They evaluated the change in financial assets among 9.5 million cancer patients age 50 or older who had participated in the longitudinal Health and Retirement Study. Costs included deductible payments and copayments for treatment, support, nonmedical care and caregivers, and loss of productivity. This study found that:

  • The financial burden of cancer peaks during treatment and often worsens as prognosis improves in part because treatment may extend over longer periods of time.
  • 42% of the estimated 9.5 million people diagnosed from 2000-2012 depleted all of their assets—an average of $92,000—within 2 years of diagnosis.
  • 62% of patients are in debt because of their cancer care.

Other studies have also shown a significant financial burden among cancer patients. Some estimate that 40-85% of cancer patients must stop work during treatment. In a study by Tang and colleagues, they estimated that   disability days alone accounted for 20% of cancer cost. Ramsey, et al., observed that in the state of Washington, people with cancer were nearly three times as likely to suffer bankruptcy as others.

The Kaiser Family Foundation teamed with USA Today and Harvard Health to survey 930 adults who had been diagnosed with cancer or had a family member who had been diagnosed with cancer within the last 5 years.

Among respondents:

  • 95% were covered by insurance throughout their cancer treatment.
  • 13% borrowed money from relatives to pay for treatment
  • 11% sought public assistance, charity or financial aid.
  • 7% borrowed money commercially (loans or second mortgages).
  • 3% declared bankruptcy.

Cost can deter people from seeking cancer screening and treatment

Financial cost can add barriers to screening, prevention and treatment of cancer. Delays in cancer care can increase morbidity and mortality.

High treatment costs have other negative consequences as well: they contribute to patients not following their care plans and poorer clinical outcomes.

The Kaiser Family Foundation survey reported that:

  • 8% of cancer patients delayed or omitted care due to expenses.
  • 4% of cancer patients chose alternative treatments due to cost.

Rebecca Sedjo, PhD and colleagues conducted a retrospective analysis of adherence to aromatase inhibitor treatment among commercially insured postmenopausal breast cancer patients: 23% of the women did not adhere to their prescribed treatment. Out-of-pocket cost was one of the factors that was associated with non-adherence.

Stephanie Wheeler, PhD and colleagues from the University of North Carolina studied financial burden in 1,000 women with metastatic breast cancer. Among participants:

  • 54% stopped or refused treatment due to cost.
  • 30% were uninsured (about twice the national average).
  • 96% of uninsured participants reported refusing or delaying treatment due to cost compared to 36% of insured participants.
  • Uninsured participants often reported being unable to meet their monthly expenses, dissatisfaction with their financial situation, and being unable to control their financial situation.

Dr. Wheeler noted:

"Our study shows that the financial toxicity of cancer is alarmingly high in many metastatic breast cancer patients and that having health insurance doesn’t protect patients from the psychosocial impact of high cancer costs...High co-insurance and deductibles mean that many patients are still shouldering an enormous financial burden out-of-pocket and feeling anxious about what it will mean for their own and their families’ finances and financial legacy.”

Rates of genetic testing are low for those on federal health insurance

For those that are uninsured or underinsured, rates of genetic testing are low - even when they have health care coverage e.g. via Medicare.

Amy Gross and colleagues examined the rate of genetic testing for BRCA1 and BRCA2 among participants in the Southern Community Cohort study—a prospective study between 2000 and 2014 involving 84,000 participants with breast and ovarian cancer from 12 southeastern states.  More than half of the participants were under age 65 and qualified for Medicare due to disabilities.

Among women who met Medicare criteria for BRCA1 and BRCA2 gene testing within five years of their cancer diagnosis, the rate of genetic testing was low:

  • 8% of women who qualified for testing received it within five years of their cancer diagnosis.
  • No study participants in Arkansas, Louisiana, Tennessee, Virginia and West Virginia were tested.

The researchers suggested that a lack of patient interest and physician recommendations might explain the low rate of genetic testing.

Changes in Medicare coverage limit BRCA genetic testing coverage

In March 2018, the Centers for Medicare and Medicaid Services (CMS)  announced that coverage of next-generation sequencing (NGS) tumor testing as well as germline testing (for BRCA1,BRCA2 or mutations in genes associated with Lynch syndrome) would be restricted to only those people with recurrent, relapsed, refractory, metastatic or advanced stage III or IV cancer who are seeking additional treatment. People with earlier stage cancers will no longer qualify for NGS-based germline testing under this Medicare policy.

There are now treatments that have been approved by the FDA (e.g. use of PARP inhibitors) for those with germline mutations. Coverage of germline testing allows for the diagnostic testing needed to determine if this treatment is appropriate.

Despite previously covering germline testing for BRCA1 and BRCA2 for those with stage I/II cancer, some Medicare contractors have altered their local coverage determinations to align with the new national coverage determination to state that germline mutation testing is not warranted for those with early stage cancer (stage I/II). This policy is opposed by many advocacy and biotech organizations including FORCE (see FORCE's statement here).

Precision medicine: Insurance coverage for cancer care has not kept pace with advances in cancer care

A Kaiser Health News article by medical reporter Liz Szabo examined the issue of financial toxicity and precision medicine. (Precision medicine involves drugs that are determined by tumor testing to be the most effective for a given patient.) This type of tumor testing is standard of care for some cancers, including melanoma and lung cancer.

Precision medicine can lead to improved outcomes, but it also adds to the patient’s cost of cancer care. A case in point is the situation in which Kristen Kilmer found herself when she was diagnosed with breast cancer at age 38. Each month, she made the 12-hour roundtrip from her home to participate in a clinical trial in Sioux Falls, SD. Precision medicine treated her tumors with a changing set of drugs. The treatment was successful, and her tumors are currently undetectable on diagnostic scans.

Testing a tumor’s DNA may yield insights into the biology of an individual's cancer. However, this process is expensive and still considered experimental by many insurers. Some private insurers will not cover the costs of genomic testing for patients with advanced cancers, even though Medicare began doing so for certain patients in March 2018. Health insurers argue that there is a lack of evidence showing that precision medicine will work consistently for all types of cancer.

Beyond the price tag for genetic testing, the cost of rotating cancer drugs can be prohibitive. As a participant in a clinical trial, treatment drugs are often provided without cost. However, costs can be difficult to cover for patients who complete a trial and then depend on continued therapy.

While Ms. Kilmer's medical results have been positive, her associated financial impact has not. She estimates that cancer treatment has cost her about $80,000 ($23,000 for early treatment and $57,000 for treating metastatic disease).

Most recent studies indicate that Ms. Kilmer’s PALB2 mutation would be susceptible to Lynparza, a drug that is approved only for breast cancer patients with BRCA mutations. While doctors are allowed to prescribe Lynparza for anyone with cancer, insurance programs are reluctant to cover such off-label treatments. Because her insurer considered the precision medicine to be experimental, Kristen Kilmer had to choose to either stop treatment that had proven to be effective or face mounting debt from out-of-pocket costs. Fortunately, for her, the drug’s manufacturer, AstraZeneca, provided medication through their financial assistance program. (And despite facing possible discontinuation of this assistance prior to publication of the Kaiser Health News article, her medication access has been maintained.)

A research study by Dr. Carolyn Presley from The Ohio State University Comprehensive Cancer Center and colleagues found that only 15% of cancer patients who underwent genomic sequencing of tumors followed up with a corresponding targeted therapy. Although the study did not ask participants why they failed to get a targeted drug, Presley believes that some patients simply could not afford them.

Dr. Presley stated:

"We’re finding the mutations, but patients aren’t getting the drugs...[Without insurance] you and I would not be able to afford these medications. It’s a huge barrier.”

Discussing cost of care with health care providers

In a study led by Dr. Rachel Adams Greenup of 607 women with stage 0 to stage III breast cancer, 78% of participants indicated that they wanted to understand cancer care costs but 79% stated that they never discussed cancer costs with their health care providers.

Dr. Adams Greenup stated:

“In an era of rising cancer treatment costs, we don’t routinely discuss the financial implications of cancer care with women embarking on treatment...Many treatment options for breast cancer are comparable in their effectiveness, but their costs can vary. As women consider various cancer treatment options, information about costs could help them make more informed decisions about which therapies are best for them.”

ASCO published a perspective statement preceding their 2018 conference on Quality care in which Dr. Timothy Gilligan chair of the Quality Care Symposium News Planning Team stated:

“As oncologists, we see the burden of high treatment costs on our patients every day. Many of them are skimping on needed medication, liquidating their savings, and taking other extreme measures to control costs...These studies reaffirm the important role we can play in initiating and guiding conversations about cost of cancer care with our patients so that together we can make the best possible treatment decisions.”

What does this mean for me?

It is important to recognize that financial costs associated with cancer care and treatment may be substantial but resources are available. Coverage of medical costs by private insurers can vary. Some treatments may be considered experimental by one insurer and not by another. It is possible to successfully appeal insurance claim denials. FORCE has samples of insurance appeals letters available online.

Discuss financial impacts of cancer care with your health care team and actively involve them in your decision-making process. Be aware that some drug companies offer financial assistance programs for certain cancer drugs. Consider whether a clinical trial is a good fit for your circumstances.

During clinical trials, treatment costs are often paid for by the agency funding the research. However, costs associated with standard care during a clinical trial may need to be covered by health insurers and subject to copay or deductible payments. Some clinical trials may require travel to a particular location and travel costs may or may not to be paid. Be aware that there are resources for financial assistance for out-of-pocket costs of clinical trial participation through non-profit organizations such as the Lazarex Cancer Foundation.

Conclusions:      

Discussing financial costs of cancer treatment with health care providers provides a patient with a more complete view of their cancer journey. Resources are available for navigating the financial choices of cancer care.

Share your thoughts on this XRAYS article by taking our brief survey.

Posted 2/8/19

Related Information and Resources

FORCE Information: Health insurance appeals

FORCE Information: Medicare Coverage of BRCA Testing Significantly Limited by New Policy

FORCE Information: Paying for cancer treatment

FORCE Information: Paying for genetic services

FORCE XRAYS category: Cancer treatment

FORCE XRAYS category: Financial issues

FORCE XRAYS category: Family and caregivers

Patient Advocate Foundation

Lazarex Foundation

References

Chan RJ, Gordon LG, Tan CJ, et al. "Relationships between financial toxicity and symptom burden in cancer survivors." Journal of Pain and Symptom Management. Dec. 11 2018, in press.

Gilligan A, Alberts DS, Roe DJ, et al. "Death or Debt? National Estimates of Financial Toxicity in Persons with Newly Diagnosed Cancer." American Journal of Medicine, 2018. 131:1137-1199.

Gross AL, Blot WJ and Visvanathan K. "BRCA1 and BRCA2 testing in medically underserved Medicare beneficiaries with breast or ovarian cancer." Journal of the American Medical Association. August 14, 2018. 320(6):597-598.

Knight TG, Deal AM, Dusetzina SB, et al. "Financial Toxicity in adults with cancer: adverse outcomes and noncompliance." Journal of Oncology Practice. Nov. 1, 2018. 14(11) e665-e673.

Ray T. "Labs, Advocacy Groups Push Back on Medicare Policy Shift on NGS Testing for Hereditary Cancer Risk" Genome Web. Jan. 22, 2018.

Szabo L. "Pricey precision medicine often financially toxic for cancer patients" Kaiser Health News. Nov 1, 2018.

"Study: Cancer-related genetic testing is rare for women on Medicare" Health Day News. Aug 18, 2018.

Thom B, Benedict C, Friedman DN, et al. "The intersection of financial toxicity and family building in young adult cancer survivors." Cancer. August 15, 2018. 124(16):3284-3289.

"Three studies reveal cancer patients face serious financial hardship, do not discuss treatment costs with physicians" American Society of Clinical Oncology. Sept. 24, 2018.

Wong Y-N, Schluchter MD, Albrecht TL, et al. "Financial concerns about participation in clinical trials among patients with cancer." Journal of Clinical Oncology, Feb 10, 2016. 34(5):479-487.

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