Data, Website and You Sunday April 26th 2015 Semi‐Annual appeal vs Hemophilia Alliance Public radio's fund drive: An inevitable rite of spring By Robert Zaretsky:A professor in the Honors College and Department of History at the University of Houston and contributor to "The Occupy Handbook." www.hemoalliance.org [email protected] Story: The signs of spring in Houston abound: buttercups are flowering along our highways, mosquitoes are strafing our Sunday picnics, and our local NPR station is threatening us with their upcoming fund drive. This event evokes, for me, the same mixture of dread and resignation I experience with the perennial flourishing of billboards asking if we've prepared for hurricane season www.hemoalliance.org [email protected] Hemophilia Alliance Members Meeting is coming up in spring. SEND US YOUR DATA www.hemoalliance.org [email protected] Story The one difference is that the fundraising drives, though less catastrophic than a hurricane, last far longer. www.hemoalliance.org [email protected] Alliance We are always asking for your data. www.hemoalliance.org [email protected] Story As with the pounding and relentless warnings about the fund drive, all we can think is, "They're back!" I confess a sense of guilt plays a role in my reaction. Though I regularly listen to KUHF, I have been an irregular member. Like the rest of us, I suspect, I have a number of strategies for dealing with this form of guilt. www.hemoalliance.org [email protected] Story Obviously, these are ethical feints: They no more address the real problem than does turning up my radio when I hear an odd clanking sound from my car's engine. The real problem is, as real problems often are, complicated. www.hemoalliance.org [email protected] Alliance Members DELETE, DELETE, DELETE ‐ emails www.hemoalliance.org [email protected] Alliance Members Sean who, never heard of him. Audra, I know I have seen that name before. www.hemoalliance.org [email protected] Story Where does this leave us? Perhaps a helpful comparison is to the individual mandate in the health reform law. The mandate's rationale is that everyone must pay into a system from which everyone benefits. Otherwise, those who decided to opt out but then fall ill would become an even greater financial burden for the rest of society. This logic, impeccable for universal health care, clearly falls short when it comes to public radio's commitment to classical music. www.hemoalliance.org [email protected] Alliance Members Who supports who? Feel guilty yet??? www.hemoalliance.org [email protected] Shows All Things Considered Ask Me Another The Best Of Car Talk Bullseye Invisibilia The Diane Rehm Show Fresh Air Here & Now Latino USA Morning Edition On The Media On Point Radiolab Snap Judgment StoryCorps TED Radio Hour Wait Wait...Don't Tell Me! Weekend Edition Saturday Weekend Edition Sunday www.hemoalliance.org [email protected] NPR Morning Edition Every weekday (around 7am to 9am)for over three decades, NPR's Morning Edition has taken listeners around the country and the world with two hours of multi‐faceted stories and commentaries that inform, challenge and occasionally amuse. Morning Edition is the most listened‐to news radio program in the country. Steve Inskeep www.hemoalliance.org Renee Montagne David Greeen [email protected] Alliance Morning Edition From: Joe Pugliese Sent: Thursday, April 9, 2015 5:44 AM To: Sean Singh Subject: Data Update How are the numbers looking? www.hemoalliance.org [email protected] Alliance Morning Edition From: Sean Singh 6:15 AM Sent: Thursday, April 9, 2015 To: Joe Pugliese Subject: Data Update Joe, Here is the update: January February March 86% 86% 86% www.hemoalliance.org [email protected] Alliance Morning Edition From: Sean Singh 6:17 AM Sent: Thursday, April 9, 2015 To: Audra Ames Subject: Data Update Audra, Any updates on the numbers? Who do I need to reach out to? (code for sending out an email begging the HTC to send data to us) www.hemoalliance.org [email protected] About Invisibilia Invisibilia (Latin for "all the invisible things") explores the intangible forces that shape human behavior – things like ideas, beliefs, assumptions and emotions. Alix Spiegel www.hemoalliance.org Lulu Miller [email protected] Alliance Morning Edition From: Audra Ames 8:41 AM Sent: Thursday, April 9, 2015 To: Sean Singh Subject: Data Update Sean, I sent out an email yesterday reminding the centers that we need their data. I will let you know the response today and then you can reach out to the centers (code for bringing down the hammer and really begging by phone). www.hemoalliance.org [email protected] Ask me Another Ask Me Another is the rambunctious live show from NPR and WNYC that blends brainteasers, pub trivia, comedy and music into an hour of mind‐bending fun. Host Ophira Eisenberg invites guests and listeners alike to stretch their noggins, tickle their funny bones and be serenaded by house musician Jonathan Coulton. What you'll hear resembles the casual intimacy of game night at a friend's house: one where scores are forgotten in favor of hilarious gaffes. Ophira Eisenberg Jonathan Coulton www.hemoalliance.org [email protected] Data compilation is not simple Baxter Purchases made in calendar month Based on delivery date not order date Example: Order placed March 29th delivered March 30th – recorded in March March 30th delivered April 1st – recorded in April www.hemoalliance.org [email protected] Data compilation is not simple Baxter All Baxter Products Advate Recombinate Rixubis Feiba www.hemoalliance.org [email protected] Data compilation is not simple CSL Purchases made in calendar month Based on order date not delivery date Example: Order placed March 29th delivered March 30th – recorded in March March 30th delivered April 1st – recorded in March www.hemoalliance.org [email protected] Data compilation is not simple CSL All CSL Products Helixate Monoclate Mononine Humate Stimate Corifact www.hemoalliance.org [email protected] Data compilation is not simple Pfizer Purchases made in calendar month Based on order date not delivery date Example: Order placed March 29th delivered March 30th – recorded in March March 30th delivered April 1st – recorded in March www.hemoalliance.org [email protected] Data compilation is not simple Pfizer A little more information Redistribution Benefix and Xyntha: Assay size Number of vials Total units Day of dispensation NDC number www.hemoalliance.org [email protected] Data compilation is not simple Grifols Products Alphanate Alphanine Thrombate www.hemoalliance.org [email protected] Data compilation is not simple All Products purchased in a calendar month Email – in the body of an email Email – your reports that you run internally Use the portal on our website – Data From Send us postcards www.hemoalliance.org [email protected] How can you get your data? Manufacturer Summary of orders for previous month www.hemoalliance.org [email protected] When do we need your data? Contract for the 15th of the month Takes time to compile www.hemoalliance.org [email protected] On Point Hosted by award‐winning journalist Tom Ashbrook, On Point is broadcast for two hours daily across the country on NPR. The show’s lively conversation covers everything from breaking news to ancient poetry, and features writers, politicians, journalists, artists, scientists and ordinary citizens from around the world. Tom Ashbrook www.hemoalliance.org [email protected] Why do all this? Our members saved over $20 million in 2014 (includes Apexus savings) For every $0.01 we save it has a big impact. We purchase 800,000,000 (million) units Savings $8,000,000 www.hemoalliance.org [email protected] Hemophilia Alliance 340B 2014 Savings = $7,105,311 Total 2014 Sub‐Ceiling Savings = $5,828,294 2014 Total Prompt Pay Discounts = $1,277,017 66.66% of Discounts Taken FEIBA, $103,104 , 2% RIXUBIS, $138,081 , 2% rFVIII, $5,587,109 96% Discounts Missed $638,741 33.3%Discounts Taken $1,277,017 66.7% 'All Things Considered' On May 3, 1971, at 5 p.m., All Things Considered debuted on 90 public radio stations. In the 40 years since, almost everything about the program has changed, from the hosts, producers, editors and reporters to the length of the program, the equipment used and even the audience. However there is one thing that remains the same: each show consists of the biggest stories of the day, thoughtful commentaries, insightful features on the quirky and the mainstream in arts and life, music and entertainment, all brought alive through sound. www.hemoalliance.org Melissa Block Robert Siegel [email protected] Audie Cornish www.hemoalliance.org [email protected] Secure Server www.hemoalliance.org [email protected] Shows All Things Considered Ask Me Another The Best Of Car Talk Bullseye Invisibilia The Diane Rehm Show Fresh Air Here & Now Latino USA Morning Edition On The Media On Point Radiolab Snap Judgment StoryCorps TED Radio Hour Wait Wait...Don't Tell Me! Weekend Edition Saturday Weekend Edition Sunday www.hemoalliance.org [email protected] Bullseye Bullseye is a public radio show about what's good in popular culture. With a keen editorial eye, Bullseye sifts the wheat from the chaff, and brings you hot culture picks, in‐depth interviews with the most revered and revolutionary creative people and irreverent original comedy. Bullseye is equal parts funny and fascinating. Whether you're already plugged in to the culture map, or looking for a signpost, Bullseye will keep you on target. Jesse Thorn www.hemoalliance.org [email protected] What do you want? www.hemoalliance.org [email protected] Searchable www.hemoalliance.org [email protected] Email Upgrade Secure Emails Easier to share information internally Spam – to you www.hemoalliance.org [email protected] Radiolab Radiolab is a show about curiosity. Where sound illuminates ideas, and the boundaries blur between science, philosophy, and human experience. Jad Abumrad www.hemoalliance.org Robert Krulwich [email protected] Newsletter April 2015 Update In this Issue... Notes from Joe · Stacia is Retiring?!?!?!? Alliance Update · All About the Alliance Pharmacy · Reminder: Inaugural Physician-Led Meeting Scheduled for May 20th 2015 in Chicago · Please Update your Information! Payer Update · Payer Survey Released! · Key Health Insurance Terms www.hemoalliance.org [email protected] Articles What do you want to hear about? Share a topic of interest…. www.hemoalliance.org [email protected] Snap Judgement It's not just one thing, it's several things, back to back, that leave you in a place you never expected to be. Snap Judgment, storytelling with a beat...from PRX and NPR. Glynn Washington www.hemoalliance.org [email protected] Guest Writers Get some feedback? Planning an event to educate HTCs? Just want to get your picture in public www.hemoalliance.org [email protected] TED Radio Hour An idea is the one gift that you can hang onto even after you've given it away. A journey through fascinating ideas: astonishing inventions, fresh approaches to old problems, new ways to think and create. Based on Talks given by riveting speakers on the world‐ renowned TED stage, each show is centered on a common theme – such as the source of happiness, crowd‐sourcing innovation, power shifts, or inexplicable connections – and injects soundscapes and conversations that bring these ideas to life. Guy Raz www.hemoalliance.org [email protected] Webinars Timely topics Action Items Contract Partners Next Schedule May 19th on Feiba www.hemoalliance.org [email protected] Shows All Things Considered Ask Me Another The Best Of Car Talk Bullseye Invisibilia The Diane Rehm Show Fresh Air Here & Now Latino USA Morning Edition On The Media On Point Radiolab Snap Judgment StoryCorps TED Radio Hour Wait Wait...Don't Tell Me! Weekend Edition Saturday Weekend Edition Sunday www.hemoalliance.org [email protected] Wait Wait…Don’t Tell Me! Wait Wait... Don't Tell Me! is NPR's weekly hour‐long quiz program. Each week on the radio you can test your knowledge against some of the best and brightest in the news and entertainment world while figuring out what's real news and what's made up. Peter Segal www.hemoalliance.org [email protected] Inaugural Physician‐Led Meeting Peer‐to‐peer conversation about the future of HTCs and how a 340B program can help HTCs serve their patients. The meeting will focus on the HTC network of 340B programs and how they can work together to continue to support and care for the bleeding disorders community. www.hemoalliance.org [email protected] Inaugural Physician‐Led Meeting www.hemoalliance.org [email protected] Inaugural Physician‐Led Meeting When: Wednesday May 20th 11 am to 3 pm CDT. Lunch will be served. Who is invited: Members of HTCs who receive federal funds through a grant from MCHB. Who should attend: Medical Directors, junior faculty, key administrative personnel. Cost: There are no registration fees. Where: Crowne Plaza Chicago O’Hare 5400 North River Road, Rosemont IL 60018. www.hemoalliance.org [email protected] Logistics for Hill Day www.hemoalliance.org [email protected] Here and Now Here & Now reflects the fluid world of news as it’s happening in the middle of the day, with timely, smart and in‐depth news, interviews and conversation. Co‐hosted by award‐winning journalists Robin Young and Jeremy Hobson, the show’s daily lineup includes interviews with NPR reporters, editors and bloggers, as well as leading newsmakers, innovators and artists from across the U.S. and around the globe. Robin Young Jeremy Hobson www.hemoalliance.org [email protected] The Best of Car Talk Car Talk is a Peabody Award–winning radio talk show broadcast weekly. Its subjects were automobiles and automotive repair, discussed often in a humorous way. It was hosted by brothers Tom and Ray Magliozzi, known also as "Click and Clack, the Tappet Brothers". The show was produced from 1977 to October 2012, when the Magliozzi brothers retired. Edited reruns continue to be available for airing. Tom Magliozzi Ray Magliozzi www.hemoalliance.org [email protected] On the Media While maintaining the civility and fairness that are the hallmarks of public radio, OTM tackles sticky issues with a frankness and transparency that has built trust with listeners and led to more than a tripling of its audience in five years. Bob Garfield Brooke Gladstone www.hemoalliance.org [email protected] StoryCorps Since 2003, StoryCorps has collected and archived more than 50,000 interviews with over 90,000 participants. Each conversation is recorded on a CD to share, and is preserved at the American Folklife Center at the Library of Congress. StoryCorps is one of the largest oral history projects of its kind. www.hemoalliance.org [email protected] The Diane Rehm Show In 1979, Diane Rehm took over as host of WAMU’s midday program, Kaleidoscope, and in 1984, the name was changed to The Diane Rehm Show. In all the ensuing years, Diane has offered listeners thoughtful and lively conversations on an array of topics with many of the most distinguished people of our times. www.hemoalliance.org [email protected] Paperless We save paper and everything will be posted online www.hemoalliance.org [email protected] Weekend Edition Saturday Saturday mornings are made for Weekend Edition Saturday, the program wraps up the week's news and offers a mix of analysis and features on a wide range of topics, including arts, sports, entertainment, and human interest stories. The two‐hour program is hosted by NPR's Peabody Award‐winning Scott Simon. Scott Simon www.hemoalliance.org [email protected] Weekend Edition Sunday Weekend Edition Sunday features interviews with newsmakers, artists, scientists, politicians, musicians, writers, theologians and historians. Every week listeners tune in to hear a unique blend of news, features and the regularly scheduled puzzle segment with Puzzlemaster Will Shortz, the crossword puzzle editor of The New York Times. Rachel Martin www.hemoalliance.org [email protected] Shows All Things Considered Ask Me Another The Best Of Car Talk Bullseye Invisibilia The Diane Rehm Show Fresh Air Here & Now Latino USA Morning Edition On The Media On Point Radiolab Snap Judgment StoryCorps TED Radio Hour Wait Wait...Don't Tell Me! Weekend Edition Saturday Weekend Edition Sunday www.hemoalliance.org [email protected] Latino USA Maria Hinojosa is an award‐winning news anchor and reporter for PBS and NPR, who covers America’s untold stories and highlights today’s critical issues. As the anchor and executive producer of long‐running weekly NPR show Latino USA she has informed millions about the changing cultural and political landscape in America and abroad. Maria Hinojosa www.hemoalliance.org [email protected] Story This particular culture, unlike health care, has no claim to universal status. Yet, because it is an increasingly marginalized and embattled culture, should public radio at the very least force its listeners to wonder if they are under a different kind of mandate to support the station? Despite the Hoboken listings, underwriter listings and Prairie Home Companion listings, I suspect we are. I'll mutter, but I'll also write a check. www.hemoalliance.org [email protected] How do you support…. YOUR HEMOPHILIA ALLIANCE???? www.hemoalliance.org [email protected] Thank You We work for you www.hemoalliance.org [email protected]
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