Bernadette O'Donoghue

treatment is underway with striking progress being made every day in immunotherapy and preci&shy;sion medicine.

Yet, as a “patients-first” organization on the front line of the battle against blood cancers, the Leukemia & Lymphoma Society (LLS) hears from patients and their families about their struggles to obtain affordable, high-quality and coordinated care. These ground&shy;breaking innovations can’t help patients who can’t access them.

As the cost for cancer care skyrockets — projected to be $173 billion by 2020, a 39 percent increase from 2010 &mdash; LLS is mobi&shy;lizing efforts to ease the burden for patients. In May 2017, LLS launched its Cost of Cancer Care Initiative by calling on all stakeholders in the ecosystem to thoughtfully consider ways in which they could meaningfully address the unsustainable costs of cancer care. LLS put forward more than two dozen potential policy solutions and other recommendations for stakeholders to consider aimed at reducing the overall system and patients’ cost of care and improving transparency across the oncology ecosystem.

Although some headway was made last year to address increasing out-of-pocket costs faced by patients for their treatments and care, more action is needed to address the financial toxicity that adds to the stress of a cancer diag&shy;nosis for patients and their families.

To further its initiative, LLS commissioned Milliman, a leading independent actuarial firm, to conduct a study looking at the cost burden of blood cancer care in commercially insured patients. The findings will inform priorities as LLS continues to tackle these issues in 2019.

Below are some of Millman’s key findings:

Professional services drive out-of-pocket costs. 

Although the high price of cancer drugs and therapies is a key cost-driver for the health care system, patient out-of-pocket costs are mostly driven by professional services — the fees patients must pay for doctor visits, radiology services, surgical costs, anesthesi&shy;ology, nursing care, lab and pathology tests. These professional service fees are incurred in both inpatient and outpatient hospital settings, as well as office-based and other care services.

Out-of-pocket costs are affected by insur&shy;ance plan type and month of diagnosis. 

Patient out-of-pocket costs for blood cancer care are strongly influenced by the patient’s insurance plan, and patient out-of-pocket costs are the highest at the onset of treatment. Out-of-pocket costs for blood cancer care spike during the month of diagnosis and then again, as expected, at the beginning of each calendar year. This is due to the deductible and out-of-pocket limit that must be met each annual benefit cycle, which are typically calendar year cycles.

Patients with blood cancer enrolled in high-deductible plans pay considerably more in out-of-pocket costs. 

Specific features of insurance plans affect patient out-of-pocket costs. Patients enrolled in high deductible plans, for example, face on average almost twice as high out-of-pocket costs as those enrolled in traditional plans. This discrepancy is even greater in the first 12 months following diagnosis. During those first 12 months, patients enrolled in high-deductible plans have out-of-pocket costs that are 64 percent higher than patients enrolled in traditional plans. This disparity is most notable for patients with acute leukemia, where patient out-of-pocket costs for those enrolled in high-deductible plans are more than double that for patients enrolled in traditional plans.

The study also found disparities in out-of-pocket costs depending on a patient’s blood cancer type.

Professional services are the driver of patient out-of-pocket costs, but the type of professional services differ by cancer type. 

Professional services not associated with a facility encounter (inpatient or outpatient hospital) contributed to the majority of professional patient out-of-pocket costs for patients with chronic leukemia (74 percent) and bone marrow disorder (65 percent) in the month of diagnosis. By contrast, profes&shy;sional services associated with inpatient admis&shy;sions contributed to the majority (62 percent) of out-of-pocket costs in the month of diagnosis for patients with acute leukemia. For the remaining cancer types, facility and nonfacility professional services contributed relatively equal amounts to the month of diagnosis professional patient out-of-pocket costs.

Acute leukemia and myeloma are the costliest of the blood cancers to the health care system. 

Patients with acute leukemia report the highest average allowed spending (amount paid by both payers and patients) in the month of diagnosis (just under $120,000). By comparison, myeloma is the second costliest cancer in the month of diagnosis with an average allowed spending per patient of $28,000. Patients with both disease types also sustain the highest levels of allowed spending after diagnosis. These patients report average monthly health care system costs of over $10,000 over a year after diagnosis.

Patients with acute leukemia have the highest out-of-pocket costs around the time of diagnosis, but patients with myeloma incur more out-of-pocket costs over time. 

In this study, average patient out-of-pocket costs for acute leukemia in the month of diagnosis were $1,637, with accu&shy;mulated total patient out-of-pocket costs for the three years after diagnosis of $8,797. By contrast, patients with myeloma incurred $1,210 in out-of-pocket costs in the month of diagnosis, but their cumulative three-year out-of-pocket costs totaled $9,127. Other blood cancers reported average three-year accumulated patient out-of-pocket costs under $7,800.

For information on diagnosis and education and financial resources, patients and families can turn to LLS’s information specialists by phone 800-955-4572 or visit lls.org/support/information-specialists.

BERNADETTE O’DONOGHUE is vice president of the Office of Public Policy for the Leukemia & Lymphoma Society where she works to further the society’s “Cures and Access” agenda. She is responsible for developing public policy strategies and tactics that encourage sustainable access to quality, affordable and coordinated health care for patients with blood cancers. She oversees engagement with federal agencies, such as the Centers for Medicare & Medicaid Services, Food & Drug Administration and National Institutes of Health.

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