The Daily Rise: Friday, July 22

Patients Deserve A Voice

Patients deserve a voice in any discussion about whether to cover lifesaving medications.

For that reason, Seth D. Ginsberg, the co-founder of CreakyJoints, says that the Institute of Clinical and Economic Review needs to overhaul its operations and incorporate genuine patient feedback into its reports.

“There is a war going on right now pitting thousands of ailing patients and their doctors against people in board rooms in an effort to win the right to access lifesaving medications and treatments,” writes Ginsberg, who helped pioneer the online patient community for patients who suffer with arthritis. “Patients are literally dying while their newest adversary – a purportedly independent nonprofit organization responsible for making decisions that impact the health care of tens of millions of Americans – has the upper hand.”

ICER establishes economists and accountants as the ultimate authorities on treatments. It’s no wonder insurance companies and pharmacy benefits managers embrace the organization’s biased conclusions.

“We believe ICER’s flawed methodology for evaluating drug value is a short-sighted approach that allows insurers to justify implementing drug rationing schemes so they can avoid paying for costly but potentially lifesaving medications. Insurance companies base their medication coverage on these findings,” Ginsberg says.

For more background on ICER, check out our co-founder and executive director Terry Wilcox’s post on the Patients Rising blog.

July 27 Webinar: Cancer Drug Coverage Parity Act

Why are cancer patients forced to pay more for self-administered chemotherapy treatments?

Next Wednesday, July 27, the Lymphoma‬ Education and Advocacy Partners will host a webinar updating patients on the fight for cancer drug parity. That’s the effort to guarantee fairness in our insurance coverage.

Right now, patients are charged more to receive oral cancer therapy than if they receive the same treatment via an IV. The Cancer Drug Coverage Parity Act would correct this imbalance. If passed, any health plan that provides coverage for cancer chemotherapy treatment would be required to provide coverage for self-administered anticancer medication at a cost no less favorable than the cost of IV, port administered, or injected anticancer medications.

Lymphoma Education and Advocacy Partners Webinar

  • Date: Wednesday, July 27, 2016
  • Time: 1-2pm ET
  • Topic: Cancer Drug Coverage Parity Act
  • Representatives Leonard Lance (NJ-7) and Brian Higgins (NY-26) on the Cancer Drug Coverage Parity Act (HR 2739); Jonathan E. Friedberg, MD, MMSc of the James P. Wilmot Cancer Institute at the University of Rochester.

Please send your questions, comments and feedback to: To register, click here.

Quote of the Day: “I Do Look Good”

“I do look good,” writes Steve Buttry, the director of student media at Louisiana State University’s Manship School of Mass Communication. “I don’t say that boastfully, but kind of ruefully, having just come from the MD Anderson Cancer Center where I got my third major cancer diagnosis. This time it’s pancreatic cancer.”

Check out Buttry’s personal narrative on handling Cancer 3.0 at Stat News.

Every Breath You Take…

Every breath you take … they’ll be watching you.

That’s the goal of new inhaler makers that want to provide patients with smarter, connected monitoring to improve patient care, according to Fortune.

“Makers of inhalers to treat asthma and chronic lung disease are racing to develop a new generation of smart devices with sensors to monitor if patients are using their puffers properly,” notes “Linked wirelessly to the cloud, the gadgets are part of a medical “Internet of things” that promises improved adherence, or correct use of the medication, and better health outcomes.”

The best treatment can only work if patients follow the proper guidelines. New smart devices can help improve patient adherence, providing more information to improve care.

“Technique is critical,” says Omar Usmani, a consultant physician at Imperial College London. “You might have the world’s best blockbuster drug in an inhaler, but if patients don’t use it properly they won’t get the benefits.”

We welcome all new technological innovations that help ensure patients are getting the right treatment. But, as with all new technology, it’s vital that we protect patient privacy. Patients shouldn’t have to compromise their privacy in order to gain access to new tools and innovations.

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