This blog will cover topics of interest that affect our community. Unless otherwise stated, the blog articles will be written by Sue Friedman, Executive Director of FORCE.

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NCCN Summit Explores Patient Perspectives of Value in Cancer Care

March 2, 2016

by Lisa Schlager

shutterstock_232849327Our January 8, 2016 blog introduced the emerging topic of value in cancer care and the importance of public participation in this discussion. On December 1, 2015, the National Comprehensive Cancer Network (NCCN) hosted a Patient Advocacy Summit titled Value in Cancer Care – Patient Perspectives in Washington, DC.  I was fortunate to attend the event on and to participate in this important dialogue on behalf of FORCE and the HBOC community.

The Right Care at the Right Time

In a roundtable discussion on access to care, it was noted that the inability to obtain appropriate care in a timely manner can have medical, psychological, and financial repercussions. To help control costs, many health insurers limit access to medical specialists. Bonnie Miller from Fox Chase Cancer Center explained that before people have cancer they choose plans “on their exchange or through their employer that offer the lowest out-of-pocket cost and they are not necessarily concerned about access to care for a diagnosis like cancer.” As such, many people are shocked when they receive a cancer diagnosis and struggle to access the services and specialists they need.

Access and Financial Toxicity

A cancer diagnosis can have serious financial consequences for patients and their families. Cancer patients are significantly more likely to experience bankruptcy than people without cancer. Faced with high out-of-pocket costs, some patients even forgo or prematurely discontinue important cancer treatments. The “financial toxicity” of cancer treatment is a problem encountered by many patients.

Patient navigation programs have been shown to increase access to and utilization of cancer care, especially for the poor and underserved. Karen Freund, vice chair of the department of medicine at Tufts Medical Center in Boston, supervised a National Cancer Institute study of patient navigation programs that showed clear benefits for the people who need it most—underserved patients who typically “fall through the cracks” of the medical system.

Dr. Veena Shankaran of the University of Washington School of Medicine and Fred Hutchinson Cancer Research Center cited a recent study finding that health care debt “makes up 38 percent of all financial debt in the U.S., ahead of student loans, credit cards, retail, utility, and mortgage debt.” To remedy this, she proposed interventions including financial counseling, improved treatment cost transparency—not just around total cost, but out-of-pocket cost to the patient—and restructuring insurance plan cost-sharing.

Drugs are a major focus in the discussion about cost and value. As the use of targeted therapies and potential for drug combinations increase, concerns about affordability are escalating. Lori Reilly, Executive Vice President of the Pharmaceutical Research and Manufacturers of America (PhRMA)—a trade group representing companies in the pharmaceutical industry in U.S.—explained that oncology drug prices reflect the high cost of research, limited market for specialized drugs, and the need to fund future research. It was also pointed out that the scope of the 340B Drug Pricing Program, which requires drug manufacturers to sell medications at discount prices to health care facilities serving uninsured and low-income people, has grown out of control. Ms. Reilly stated that nearly half of the hospitals in the U.S. now participate in the program, but many don’t pass the savings on to their patients.

With high deductibles and coinsurance on specialty drug tiers, most people don’t know what the cost of their treatment will be, explained Avalere Health’s Caroline Pearson. “Say I have a $60 copay; I know what that is. You say I have to pay 30 percent of the cost of the negotiated price of my drug, and I have no idea what that is. This becomes very hard to manage.”

New Models for Cancer Care

Alan Balch, CEO of the Patient Advocate Foundation, outlined four key areas for defining value in cancer care—precision medicine, patient engagement, alternative payment models or payment reform, and quality measurement. He proposed rewarding health care providers who deliver quality care and identify treatment plans that align with their patients’ preferences, emphasizing that value is a very individual thing.

There was consensus about moving away from the current “fee for service” health care model. The concept of an Oncology Medical Home (OMH)[i] was discussed as a potential alternative model. This health care model strives to improve care coordination and measure positive outcomes relating to the quality, efficiency, and cost of patient care. In this model, the clinical team coordinates the patient care, which leads to an enhanced patient experience, and the OMH provides payers with better value for their health care dollars. Finally, OMH aligns financial incentives so community oncology practices can stay independent and expert care stays close to home. Successfully implemented in a handful of practices, demonstration projects are underway in Michigan and elsewhere to determine the viability of this option.

More than 10 percent of U.S. primary care practices, approaching 7000 altogether, are recognized as Patient-Centered Medical Homes (PCMHs) by the National Committee for Quality Assurance (NCQA), which has the nation’s largest PCMH program.[ii] A review of existing medical home practices revealed noteworthy reductions in hospitalization rates, inpatient days, and total cost of care. Another proposal for curbing escalating cancer care costs is value-based insurance design and performance-based payments, a model currently being tested in the U.K.

At the end of the day, when asked how to balance cost with positive outcomes, panelists suggested regulatory reform, insurance benefit redesign, better research design, revamped drug discount programs, and cost transparency. All are good suggestions worth further exploration but it is crucial to include all of the stakeholders—especially consumers—in every aspect of the conversation. With new research on targeted therapies and special risk management recommendations for high-risk people, FORCE will continue to educate and advocate to ensure that the unique needs of the HBOC community are taken into account as this important dialogue moves forward.


[i] Oncology Medical Home –

[ii] The Future of Patient-Centered Medical Homes –

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