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On 'Sound Medicine': Rare diseases and social media; medication noncompliance; and 'Curious Behavior'


How do traditional and social media converge to help those with rare diseases? In a field piece by Mary E. Harris, the story of Jeneva Stone and her son Robert, who suffers from a previously unidentified genetic disease, is set against the backstory of the foundation of the Rare Genomics Institute. Jimmy Lin, a geneticist at Washington University in St. Louis, founded the institute, blazing the trail for his patients to use “crowd-funding” to build websites that tell their story and collect donations for research that could help identify their disorders. This unique fundraising method allowed Jeneva Stone to isolate the gene that was causing her son’s condition and connect with the small number of other families around the world who have children with the same condition.

What happens when a leading medical institution excludes a new drug from its treatment panel?  After Memorial Sloan-Kettering Cancer Center decided it would not use a drug that cost twice that of a comparable one with the same efficacy, the manufacturer decided it would reduce its cost by half. Aaron Carroll, M.D., M.S., talks about the situation and the impact it could have on the health care arena. Carroll is director for the Center of Health Policy and Professionalism Research and associate professor at the IU School of Medicine.

What happens when patients don’t follow doctors’ orders? Studies show that when patients don’t take their medications as prescribed, their conditions and the cost of health care rise precipitously. Walid Gellad, M.D., MPH, assistant professor of health policy and management and the University of Pittsburgh and associate scientist at RAND Corporation, talks about incentives to encourage patients to take their medications.

How do you know if it is time to reach out for help with addiction? In another segment with J. Wesley Boyd, M.D., Ph.D., assistant clinical professor of psychiatry at Harvard Medical School and co-author of “Almost Addicted,” Boyd discusses when it is necessary to reach out for professional help or attend AA or NA meetings. He says people who are struggling to stop on their own or cut back on their drug use  would greatly benefit by reaching out to a professional or a clergy member.

What do “mundane” behaviors accomplish? Psychologist Robert R. Provine, Ph.D., set out to find the purpose of behaviors we all exhibit, including laughing, yawning and sneezing. In his new book “Curious Behavior,” Provine shares the inspiration behind his book and the parallels between such behaviors in humans and animals.

When should doctors retire? In a new segment titled “Voices from the Clinic,” host Steve Bogdewic, Ph.D., chats with William Norcross, M.D., who started the Physician Assessment and Clinical Education Program designed to help physicians decide when it is time to retire. Norcross is a professor of clinical family medicine at University of California- San Diego. He says that although cognitive functions begin to diminish in the sixth decade of life, this does not mean that aging physicians can’t find another role in health care that does not compromise patient safety.

What makes your stomach turn? Scientists are only beginning to understand what causes nausea. Linda Parker, professor of psychology at University of Guelph in Canada, has studied the physical origin of nausea in rats. Parker discusses her research with nausea and rats, and its potential to alleviate nausea in humans, with “Sound Medicine” host Jeremy Shere in this week’s Checkup.

“Sound Medicine” covers controversial ethics topics, breakthrough research studies and the day-to-day application of recent advancements in medicine. It’s also available via podcast and Stitcher Radio for mobile phones and iPads and posts updates on Facebook and Twitter.

“Sound Medicine,” co-produced by the IU School of Medicine and WFYI Public Radio (90.1 FM) and underwritten in part by Indiana University-Purdue University Indianapolis, is aired on the following Indiana public radio stations: WBSB (Anderson, 89.5 FM), WFIU (Bloomington, 103.7 FM; Columbus, 100.7 FM; Kokomo, 106.1 FM; Terre Haute, 95.1 FM), WNDY (Crawfordsville, 91.3 FM), WVPE (Elkhart/South Bend, 88.1 FM), WNIN (Evansville, 88.3 FM), WBOI (Fort Wayne, 89.1 FM), WFCI (Franklin, 89.5 FM), WBSH (Hagerstown/New Castle, 91.1 FM), WFYI (Indianapolis), WBSW (Marion, 90.9 FM), WBST (Muncie, 92.1 FM), WBSJ (Portland, 91.7 FM), WLPR (Lake County, 89.1 FM) and WBAA (West Lafayette, 101.3 FM).

“Sound Medicine” is also broadcast on these public radio stations across the country:, KSKA (Anchorage, Alaska), KTNA (Talkeetna, Alaska), KUHB (Pribilof Islands, Alaska), KUAF (Fayetteville and Fort Smith, Ark.), KIDE (Hoopa Valley, Calif.), KRCC (Colorado Springs, Colo.), KEDM (Monroe, La.), WCMU (Mount Pleasant, Mich.), WCNY and WRVO-1 (Syracuse, N.Y.), KMHA (Four Bears, N.D.), WYSU (Youngstown, Ohio), KPOV (Bend, Ore.) and KEOS (College Station, Texas).