WCOE: Health Care Access and Affordability; FDA's Plans to Better Incorporate Patient Voice in Drug Development; Patient Portal Pitfalls; and More - NCCS - National Coalition for Cancer Survivorship

What Caught Our Eye (WCOE), March 30, 2018
What Caught Our Eye is our week-in-review blog series, where we recap the cancer policy articles, studies, and stories that caught our attention.

Affordable Care Act

“Why Some Americans Are Risking It and Skipping Health Insurance”

Bloomberg is following a dozen of these families this year in an effort to understand the trade-offs when a dollar spent on health insurance can’t be spent on something else. Some are financially comfortable. Others are scraping by. https://t.co/I4dLLygpmO

— ProPublica (@propublica) March 26, 2018

Via Bloomberg — In tiny Marion, North Carolina, the Buchanans decided that $1,800 a month was too much to pay for health insurance, and are going without it for the first time in their lives.
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“Patterns in Health Care Access and Affordability Among Cancer Survivors During Implementation of Affordable Care Act”

Excited to see our work in @JAMAOnc this week: “Patterns in Health Care Access and Affordability Among Cancer Survivors During Implementation of the Affordable Care Act.” https://t.co/mvjQkbb0B1 #FinancialToxicity @MGHCancerCenter @harvardmed @MonganHealthPol #PallOnc pic.twitter.com/RU92XchewZ

— Ryan Nipp, MD, MPH (@RyanNipp) March 30, 2018

Via JAMA Oncology — What are the issues with health care access and affordability for cancer survivors compared with non-cancer-affected control respondents, and how did the proportion of survivors reporting these issues change over time?
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Coping With Cancer

“Without Context or Cushion, Do Online Medical Records Make Sense?”

NCCS CPAT Member @rebeccaesparza shares her experience with patient portals in this insightful @washingtonpost article by Sandra G. Boodman. Reply to this tweet with your thoughts or experiences with patient portals. #patientfirst https://t.co/1FWrIa3861

— NCCS – National Coalition for Cancer Survivorship (@CancerAdvocacy) March 27, 2018

Via Washington Post — As she herded her two young sons into bed one evening late last December, Laura Devitt flipped through her phone to check on the routine blood tests that had been performed as part of her annual physical. She logged onto the patient portal link on her electronic medical record, scanned the results and felt her stomach clench with fear.
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Cancer News

“With $150M gift, Rogels will help U-M Cancer Center Transform Cancer Research, Care”

Rich & Susan Rogel's transformational $150M gift to our @UMCancerCenter will fuel lifesaving innovations in the diagnosis & treatment of cancer. Their giving & service continues to help @UMich develop the newest Leaders & Best in cancer research and care. https://t.co/tdtwl3UOMe pic.twitter.com/k3IDcODw6j

— Dr. Mark Schlissel (@DrMarkSchlissel) March 29, 2018

Via University of Michigan Medicine — Richard and Susan Rogel are on a mission to boost innovative cancer research and develop the next generation of cancer pioneers — and they are committing $150 million to the University of Michigan Comprehensive Cancer Center to realize that vision.
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Cancer and Drugs

“A Billionaire Couple is Pumping Money into the Drug Pricing Debate. Can They Loosen Pharma’s Grip?”

He was a whiz kid trader at Enron before its fall. He then ran his own hedge fund. Now, he and his wife are taking on drug prices. https://t.co/NUbAO21zBW

— STAT (@statnews) March 26, 2018

Via STAT News — John Arnold is legendary for turning contrarian bets into heaps of money. The soft-spoken Texan was a whiz kid trader at Enron before its fall. He then ran his own hedge fund, specializing in energy trading. Before he turned 34, he was a billionaire.
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“Statement from FDA Commissioner Scott Gottlieb, MD, on FDA’s Efforts to Enhance the Patient Perspective and Experience in Drug Development and Review”

Statement from @SGottliebFDA on FDA’s efforts to enhance the patient perspective and experience in drug development and review: https://t.co/1PjfprMwu0

— Media Affairs (@FDAMedia) March 30, 2018

By — Benefit-risk assessment is at the heart of what we do to ensure that Americans have access to medical products that are safe, effective and meet their needs.
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