The Daily Rise: Wednesday, May 11

CancerCare Patient Survey: 40% of Young Cancer Patients Forced to Fail First

Our friends at CancerCare have published a landmark study that reviewed feedback from 3,000 patients across six surveys on a wide variety of topics related to cancer care in the United States.

We’re still working our way through each of the six major topic areas: understanding the diagnosis of cancer, participation in treatment decisions and planning, communication with the care team, financial and insurance issues, symptoms, side effects and quality of life, and survivorship.

Immediately, two findings jump out to us here at Patients Rising:

  • Nearly 4 in 10 respondents ages 25 to 44 were required by their insurers to follow a “first fail” regimen in managing symptoms and side effects. For most patients, this forced them to use a non-preferred medicine for 2 to 3 months.
  • Regardless where they were treated, only 12% to 18% of respondents to this survey felt adequately informed about clinical trial opportunities

Full survey results are available at If you have an interesting tidbit from the study, Tweet us @patientsrising & @cancercare using #CancerCare.

What’s another year of your life worth?

Susan Gubar recalls being asked that troubling question by a radio producer looking into cancer treatments. In a piece for the New York Times, she tackles the subject of QALY. You’ll recall from our Know Your Jargon entry earlier this month that QALY stands for “quality adjusted life year.”

Gubar debunks the $50,000 valuation that has been frequently used by the media and researchers. Then, she moves on to explain why even updated numbers from the New England Journal of Medicine valuing patients’ lives at $100,000 or $150,000 per QALY are flawed.

“Whatever the estimate, a crude ratio of cost effectiveness, like the QALY, seems presumptuous,” she writes. “How can qualitative factors (nausea, fatigue) be converted into quantitative numbers? How can general calculations account for individual variations (my preference for fatigue over nausea) or overriding personal beliefs and principles about what constitutes a valuable existence?”

Oops… Across the Pond

The United Kingdom’s National Health Service has been fined more than a quarter of a million dollars for inadvertently sharing the names of 700 HIV patients.

“In September 2015, the 56 Dean Street clinic, a sexual health clinic in London’s Soho area, sent out a newsletter that revealed the email addresses of HIV patients to one another, the BBC reported at the time,” CNET reports on the incident. “The addresses had been copied into the “to” field of the email, instead of the “bcc” field, which obscures the names of recipients from one another.”

Although most of our readers are based on this side of the Atlantic, it’s a cautionary tale of how easily sensitive patient data can be disclosed in violation of patients’ privacy rights. Even something as simple as a mass email to patients can have serious effects for patients’ privacy. Hospitals, insurance companies and other providers of medical care need top-to-bottom training on patient privacy and digital security.

Webinar Recap: Cost Drivers in Cancer Care

We’ve sharing our live blogging from a recent webinar on the “Cost Drivers in Cancer Care.”

A Milliman study released recently by the Community Oncology Alliance shows that over the last decade the total costs of treating patients with cancer in the United States have risen no faster than overall costs for Medicare and commercially insured populations. Contrary to a commonly held misbelief that cancer care costs have rapidly outpaced other health care spending trends, the study actually found that total costs of treating patients with cancer have increased at essentially the same rate as all health care spending since 2004.

  • Total cancer care costs are not increasing any faster than overall medical costs for both medicare and commerical populations.
  • Drugs are the fastest growing component of cancer care costs but those are offset by a decrease in other areas (ie. hospitalizations and cancer surgeries)
  • Where cancer is delivered has a major impact on the cost drivers.

You’ll receive updates about new resources, patient stories and insights, advocacy work, and alerts about patient-support events.