The Lynx Group

The NCCN New Tool to Assess Value Discourages Patients’ Hope

November 2015, Vol 6, No 10
Robert Goldberg, PhD
President and Co-Founder
Center for Medicine in the Public Interest
Springfield, NJ

In October, the National Comprehensive Cancer Network (NCCN) released its first set of “flash cards” or “Evidence Blocks” as a tool for evaluating treatment decisions, seeking to solve a drug cost problem that does not exist, by adding to a problem that does: insurers shifting the cost of cancer treatment to patients. In so doing, the NCCN could inadvertently increase the rate at which patients with cancer choose assisted suicide.

The NCCN, like the American Society of Clinical Oncology (ASCO), has created a platform telling doctors and patients that in selecting treatments, some medicines are worth more than others.

The intentions are laudable. The NCCN, like ASCO, claims that choosing which medicines are most affordable will address “the combination of increasingly unsustainable rises in the costs of cancer care, the accelerating pace of expensive innovations in oncology, and persistent hope for rescue in patients with life-threatening disease.”1

However, the assertion that cancer costs are unsustainable is false. New cancer drugs are expensive, no doubt; yet they account for only 0.7% of the $2.9 trillion we spend on healthcare. Cancer spending has increased from $42 billion in 1995 to approximately $130 billion today,2 but its share of total health spending declined from 4.7% to 4.4% during the same time period.3

Similarly, although new drug prices have increased over the past 2 decades, they have not increased any faster than hospital and physician charges, which are the biggest drivers of cancer-related costs over the same time period.

In fact, new medicines reduce the costs that are incurred with a cancer diagnosis (eg, by reducing hospitalizations). In 1996, drug cost accounted for 3.7% of cancer-related spending and inpatient hospital stays accounted for 62.4%.4 By 2012, drug spending was 9.3% of cancer-related costs, whereas costs resulting from hospitalizations decreased to 41.3%.5

Out-of-Pocket Costs

The out-of-pocket cost of cancer drugs has indeed increased, as a result of insurers and pharmacy benefit managers shifting up to 40% of the cost of a drug, which 2 years ago cost only a few dollars monthly, to patients.6 For example, since 2006, insurance plans have shifted drugs, such as imatinib mesylate (Glee­vec), lapatinib (Tykerb), and sunitinib (Sutent), from copay to coinsurance. More recently, the percentage of health plans placing all drugs in the highest cost-sharing tier has nearly doubled.7

Capping cost-sharing would require people to pay 0.5% more in premiums monthly.8 Yet, NCCN accepts insurer cost-shifting as a fait accompli. It forces doctors and patients to choose treatments based on the insurer-imposed cost of a medicine, a cost that is often based on how big a rebate other medicines generate rather than based on value.

Furthermore, each NCCN flash card measures 1 drug for 1 disease, for an average patient. But often, drugs must be used in combination to achieve positive results. Indeed, each “tumor may embody more than 100 different diseases, and multiple subtypes of each tumor exist. Even if some of these tumors have things in common, the individual landscape of each patient may be very distinct.”9

The Value of Hope

Finally, it seems the flash cards are to be used to discourage the “persistent hope for rescue in patients with life-threatening disease.”1

First, discouraging patients from receiving “rescue” treatment will not save money. If we increased the percentage of patients refusing treatment in favor of hospice or euthanasia to the level of the Netherlands, we would “save” less than $5 billion annually.10

Moreover, hope is a valuable thing. For example, azidothymidine, the first antiretroviral drug for HIV, showed no additional survival benefit in clinical trials. The NCCN Evidence Blocks would deem this drug expensive but ineffective. In the real world, the use of such medicines kept enough people alive until the next generation of anti-AIDS treatments extended life by years. The NCCN Evidence Blocks negate that value, as well as the value of hope associated with such treatments, which is ultimately justified by the introduction of the next generation of medicines.

By emphasizing the insurer-imposed out-of-pocket cost, the Evidence Blocks may encourage people to stop hoping and start dying, when in fact hope is a good thing.

A survey of patients who chose assisted suicide in Oregon shows that since 1998, the number of people citing the cost of care as a reason for their decision jumped by 77%.11 To the extent that the NCCN Evidence Blocks reinforce the impact of insurer cost-shifting, they may contribute to an increase in patients with cancer choosing to die.


  1. National Comprehensive Cancer Network. Educational events and programs: Policy Summit: Value, Access, and Cost of Cancer Care. Accessed October 15, 2015.
  2. IMS Health. IMS Health finds global cancer drug spending crossed $100 billion threshold in 2014. Press release. May 5, 2015. Accessed October 15, 2015.
  3. Tulunay FC [moderator]. Reimbursement issues in cancer drugs: do we have to pay for all cancer drugs? ISPOR 13th Annual European Congress panel discussion; November 8, 2010; Prague, Czech Republic. Accessed October 21, 2015.
  4. Agency for Healthcare Research and Quality; Medical Expenditure Panel Survey. Table 3: Total expenses and percent distribution for selected conditions by type of service: United States, 1996. Accessed October 19, 2015.
  5. Agency for Healthcare Research and Quality; Medical Expenditure Panel Survey. Table 3: Total expenses and percent distribution for selected conditions by type of service: United States, 2012. Accessed October 19, 2015.
  6. Murphy L, Sadownik S, Ford C, et al; for Avalere Health; American Cancer Society Cancer Action Network. Cost sharing for cancer patients in Medicare, 2009. December 2008. Accessed October 15, 2015.
  7. Avalere. Avalere PlanScape analysis of prescription drug tier placement and cost sharing in health insurance exchange plans. February 11, 2015. Accessed October 15, 2015.
  8. Pyenson B, Ziomek B, Simon K; for Milliman, Inc. Pharmacy cost sharing limits for individual exchange benefit plans: actuarial considerations. Milliman client report. March 5, 2015. Accessed October 15, 2015.
  9. Kuznar W. Practical problems must be overcome to move personalized medicine forward in oncology. Value-Based Cancer Care. 2013;4:37.
  10. Emanuel EJ, Battin MP. What are the potential cost savings from legalizing physician-assisted suicide? N Engl J Med. 1998;339:167-172.
  11. Oregon Public Health Division. Oregon’s Death with Dignity Act—2013; page 6. Accessed October 21, 2015.

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