4/27/2016 by Share Your Story

The Daily Rise: Thursday, April 28


Know the Trend: Shift to Healthcare Consumerism

Should health care be treated like any other consumer good or industry? MedPageToday’s Gregory A. Freeman says that so far patients have been “slow to adopt healthcare consumerism,” or the effort to treat your health care like you shop for groceries or hotel rooms.

“There has to be a trigger for the consumer to change behavior,” Jean-Pierre Stephan, head of customer relationship management at Accenture, told MedPageToday. “Just having information out there, thinking patients will come to the information because you’re transparent and it’s there, is not how other industries have solved consumer behavior problems. That is why we’re seeing low adoption rates with these solutions.”

Researchers from Harvard T.H. Chan School of Public Health found that just 3.5% of patients who had access to a pricing tool offered by Aetna from 2011 to 2012.

“There is a competitive need for providers to get transparency right, in terms of what information to present and through which channels,” Stephan said. “Consumers who get the information they want, in the way they want it, are less likely to take their business elsewhere just for a small cost savings. When people feel that they can easily get information they can trust, that has a value to them.”

The trend toward health care consumerism has advantages and disadvantages. On the plus side, patients feel more empowered to shop around and get more information about their options. Too many patients fail to ask questions of their medical providers. Conversely, when treat health care like your average consumer product, it grants more influence to price and cost.

It’s important to be knowledgeable about the latest health care trends, such as the push for health care consumerism. Today’s trends appear in tomorrow’s policy change notices.

Don’t the Duchenne Boys Deserve a Moonshot, Too?

Terry Wilcox, our co-founder and executive director, shares her take on a New York Times story about a treatment option for muscular dystrophy that was voted down on two counts by FDA advisors.

“This treatment on trial before the F.D.A. Advisory Committee proved optimistic to the few boys able to enroll in the small trial, and yet it is only for 13% of Duchenne’s patients,” she writes. “Depending on what statistics you read, that’s less than 3000 boys in the U.S., and yet there were familes from the U.K. in the room willing to move here if it was approved.”

“Encouraging innovation and pushing beyond what we think is possible despite the bumpy road ahead … this is why we founded Patients Rising. New treatments are discovered only to realize the journey to access can be equally as long and full of potholes. This is why we should all fight.”

The Caregiver’s Voice

Every day, more patients and caregivers are sharing their personal experiences with treatment innovations and the dangers posed by value frameworks.

Writing at the Telegram, Diane Barter, a Massachusetts pediatric nurse, takes direct aim at the Institute for Clinical and Economic Review for its value framework. There’s universal agreement that ICER’s framework has substantially undervalued treatments for multiple myeloma, a disease that Barter knows all about.

“My husband, Terry, has multiple myeloma. When he was diagnosed 16 years ago, our initial fear was quickly replaced with profound courage. Why courage?” Barter writes. “Terry’s doctor told us that because of amazing new medical and therapeutic innovations, although this rare blood cancer is not curable, it might be treatable – and even manageable. And in Terry’s case, treatable with just a pill. But there was a catch. Terry would be the first patient to take it.”

Terry’s experience underscores the difference between cost and value.

“How do you measure the value to families? How do you measure the value of continued earnings, paying salaries, taxes and insurance premiums? Certainly not the way ICER does by assigning a ceiling to the cost of treatment based on a ratio to the national economy. Until it happens, you have no idea what it is like to have a price on your head.”

We’re glad to see caretakes like Diane Barter speak up and share their story.

Robbed of Rebates

Forbes.com’s Yevgeniy Feyman believes that patients should demand a bigger cut of the $115 billion saved through prescription drug rebates.

Citing data from the IMS Institute for Healthcare Informatics, Feyman notes that rebates reduced spending on prescription drugs from a retail price of $425 billion to $310 billion per year. Roughly, 15 percent of that cost is paid directly by patients through co-pays and co-insurance. However, when it comes to the rebates, patients are bearing a greater share of the cost.

“(W)hen a patient is required to pay 50 percent coinsurance for a drug with a list price of $8,000, and a net price of $5,000 (after rebates, discounts and other price concessions), the patient will pay 50 percent of $8,000 ($4,000) rather than the $5,000 ($2500),” Feyman points out. “That’s a 38% higher payment by the patient, based on a price that no one pays.”

He adds, “For those of us concerned about patient access to effective medicines– and if you’re a health policy researcher you should be – that should be troubling.”

Count us among the concerned. Drug rebates are just one of the many areas where big players in health care use their size and influence to dictate unfair terms. It’s only fair: if a drug rebate lowers the price, patients should share in that savings.


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