7/1/2016 by Share Your Story

Patients speak out on ICER proposals to radically alter our health care — Daily Rise: Friday, July 1


They’re Listening…

Patients are voicing our concerns with the Institute for Clinical and Economic Review’s proposals to radically alter our health care.

They’re listening.

ICER announced yesterday that it was extending the period of public comment for its latest draft document evaluating treatments for non-small cell lung cancer after “important feedback received from patient groups and other stakeholders.”

“ICER is committed to ensuring that each of ICER’s reviews benefits from the input of all stakeholders and adequately considers all perspectives of each topic,” the organization said in a statement. “We hope this change improves the ability of members of the stakeholder community to provide their valuable insights and will ultimately improve the quality and actionability of our upcoming reports.”

This move is good news. It shows that ICER is listening to your comments and that patients are having an impact on these proposals. So keep writing. Keep Tweeting. Keep posting on Facebook. Keep telling your friends and family about how this obscure entity is an important player in our access to life-saving treatments.

Need more info? Our co-founder & executive director Terry Wilcox has the definitive analysis of what ICER Draft Scoping Document for Non-Small Cell Lung Cancer means for patients.

ICER Watch: Shifting Costs to Patients

Insurance companies are shifting more costs to patients, says Seth Ginsberg, co-founder and president of Global Healthy Living Foundation.

“Insurers are shifting costs to customers, including higher out-of-pocket prescription costs, higher copays, and skyrocketing premiums and deductibles,” Ginsberg writes in a piece published at the Detroit News. “As a result, many Americans have seen their health care costs increase in the past year. Small organizations, like our 11 employee operation, are faced with a 17 percent premium hike next year, raising our already high premium to more than $700 per month for a single employee and almost $1,300 for a family.”

Ginsberg connects the dots between Medicare’s proposal to slash reimbursement rates and ICER’s efforts to place a price tag on treatments.

“Lawmakers are looking for someone to blame, which is why insurance companies are working behind the scenes to deflect criticism and shape industry-friendly policies,” he explains. “Now, insurance companies are covertly driving an initiative to revamp how Medicare pays for certain medications and encourage the use of cheaper options regardless of whether they work. To do this, Medicare is using recommendations from the Institute for Clinical and Economic Review.”

Outrageous Assault on Patient Access to Care

Patients face attacks on our access to treatments at every turn.

In case there’s any doubt as to what we’re up against, check out the latest piece from National Review’s Wesley Smith on the most outrageous assault on patient access to care. As part of an effort to restrict access, some are starting by redefining non-beneficial care. One medical journal wants to exclude keeping a patient alive from the definition of beneficial care.

Under the International Journal for Quality in Healthcare’s latest definition for non-beneficial treatment, “The term NBT therefore reflects an objective inverse correlation between intensity of treatment and the expected degree of improvement in a patient’s health status, ability for survival to hospital discharge or improvement in quality of life.”

Smith points out what’s missing.

“Note that keeping the patient alive because the patient wants to stay alive isn’t mentioned,” he writes. “In other words, the medical technocrats and bioethicists are redefining the core purpose of medicine — maintaining life when that is wanted — and claiming that keeping a patient alive can be non-beneficial. To whom? It is certainly beneficial to the patient under those circumstances!”

Redefining terms, such as non-beneficial treatment, is a purposeful effort to reduce access.

The Patient’s Voice

“Was it a fluke? Was infection causing my PSA to accelerate? Did I have cancer?”

In today’s focus on the patient’s voice, we share journalist Howard Wolinsky’s journey and decision-making after his prostate cancer diagnosis.

“I thought prostate cancer was the concern of older men, not me,” he shares of his experience in a piece published at MedPageToday. “I made an appointment with Patel with the expectation that the accelerated PSA would be found to be a quirk and I’d walk out and pick up on my life and never think about my prostate again.

“I couldn’t have been more wrong. I didn’t know it, but I was about to cross the Rubicon, entering the assembly line of prostate cancer care that will last the rest of my life.”

Wolinsky chose to pursue active surveillance, which requires serial PSAs every 3 to 6 months combined with annual or biannual biopsiesa. As of 2010, fewer than 9 percent of men opted for active surveillance.

We continually emphasize that our health care system should be about getting the right treatment to the right patient, right now. Every patient — with the proper information and education — should decide their course of treatment – or non-treatment. The decision has to be made by the patient. Not insurance companies. Not accountants. Not government bureaucrats. Not even our doctors.

And sometimes the right decision is active surveillance rather than surgery.


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