2/12/2016 by Share Your Story

The Daily Rise: Friday, February 12


If you read one thing today…

Take the time to check out Margot Sanger-Katz’s piece in the New York Times on presidential candidates promising major budget savings by requiring Medicare to negotiate drug prices.

“The real problem is that Medicare can very rarely say ‘No way’ to a drug company… Medicare is required to cover almost every cancer treatment that is approved by the Food and Drug Administration, for example, one of six categories where the drug plans can almost never say no to the drug companies.”

Britain uses a system where any drug maker that refuses to negotiate is banned from selling any drugs to the government. That’s a double-edged sword for patients, who don’t get access to some treatments.

Bottom Line: “The trade-offs between price and generosity are real and wrenching.”

The Big Story: Zika

President Obama is seeking a $1.8 billion investment in research to develop a vaccine for the Zika virus. Of course, as many patients know, today’s investment in drug development still means years of waiting for any real benefits. CNN’s Jen Christensen notes:

“Today, vaccines must meet many more government benchmarks before drug makers bring it to market. It takes several years of lab research for scientists to figure out what the antigen is to stop a disease. Once the U.S. Food and Drug Administration signs off on the early vaccine material to be tested further, it goes through at least three more stages of testing to determine how big a dose is needed, to see what the side effects are and to see whether it works on a large group of people.”

All investments in drug development are welcome. We hope this $1.8 billion investment in developing a Zika vaccine will change how people think about the cost of a potentially life-saving treatment. Life-saving treatments require major investments of time and money.

Paying for Drugs on Value: Who Tracks That?

Bloomberg Gadfly columnist Max Nisen writes on Novartis and the future of drug pricing. “Novartis is bucking that convention by agreeing to let insurers Cigna and Aetna pay different prices for its heart-failure drug, Entresto, based on how it performs.” Ultimately, this new model for drug pricing could “increasingly tie drug prices to how well they work instead of just what the market can bear.”

An intriguing concept that certainly needs more details, especially when it comes to protecting patients. A tracking system for patient compliance adds a whole new set of costs to the system. Who is paying for that?

Know Your Rights: Independent Third Party Review

Tracy Vedder of KOMO News shares how one Hepatitis C patient fought back against an insurance company rejection of a life-saving treatment.

At first, United Health Care denied Chris Jacobsen’s request for Harvoni, even after paying $17,000 per year in insurance premiums. “The denial letters show their rules required Jacobsen to be much sicker before he could get the cure…Jacobsen did something most patients don’t know about; he asked for an independent third party review.”

It worked.

And while we’re on the subject of good news for Hep C patients, check out Phil Buck of KTHV’s piece on the Central Arkansas Veterans Healthcare System “amazingly high success rate in treating veterans with hepatitis C.”

Off-Label Use

New England Public Radio shares insight into a retinal surgeon’s decision-making for prescribing off-label drugs. How do providers evaluate their ethical duty to effectively care for patients? Dr. Andrew Lam, author of “Saving Sight,” says, “When making treatment decisions, we often ask ourselves, “How would I treat my mother, or myself?”

Forbes’ Yanzhong Huang explains in detail how off-label drug use can expand access to innovation.

“While a pharmaceutical company is prohibited from advertising a drug for any unapproved purposes, physicians are free to use it for any purposes that in their professional judgment are considered safe and effective. This practice can be adopted by almost any country in the world: in the United States, for example, off-label use of drugs is very common in cancer treatment.”

#FailFirstFeb

This month, we’re joining the millions of patients fighting the devastating policies of insurance companies that enforce “fail first” policies.

NY must join other states w/ policies to curb #steptherapy. Learn more about #A2834/S3419 #FailFirstFeb https://t.co/XdVBb0ZECT

— NAMI New York State (@NAMINEWYORK) February 11, 2016

Question of the Day

Q: What it will take to achieve Cancer MoonShot 2020?

A: “Having well-validated biomarkers in a clinical trial improves the likelihood of success four-fold” –Ellen V. Sigal, PhD, Chairperson and Founder, Friends of Cancer Research.


Spread the Word:

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