This special episode of BloodStream features our newest team member, Vivian Bea Lynch! Patrick and Natalie are back to share Vivian’s birth story. While we are thrilled to share that Vivian Bea is safely in the world, her journey in getting here was unexpected, complicated, and, frankly, scary for her parents. Patrick and Natalie are health advocates who believe that sharing their and Vivian’s story will not only provide a means of processing for them, both can also amplify the normalization and awareness for complicated birth stories. They believe in the power of storytelling for good and for healing ...and this is Vivian’s story.
Program Notes:
LINKS from Nat: https://www.medpagetoday.com/meetingcoverage/acog/72600
Blood brother Michael Bishop joins to discuss quarantine life with Patrick, Ask The Expert host Amy Board joins to share her experience in self-isolation, plus WFH, HFA, and NHF updates!
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Day 5 from WFH's 2018 World Congress is in the books, as is the 2018 Congress itself! What a few days it's been. We spend a few minutes reviewing today and capsuling the conference before saying goodbye from Glasgow!
During this week long special edition of The BloodStream Podcast, host Patrick James Lynch posts daily recaps of the World Federation of Hemophilia's World Congress, held in Glasgow, Scotland from May 20th to May 24th, 2018.
Follow Along: #WFH2018
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Day 4 from WFH's 2018 World Congress is in the books, and The BloodStream Podcast daily recap is ready!
During this week long special edition of The BloodStream Podcast, host Patrick James Lynch posts daily recaps of the World Federation of Hemophilia's World Congress, held in Glasgow, Scotland from May 20th to May 24th, 2018.
Follow Along: #WFH2018
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This month on The BloodStream Podcast, Nabila Husseni from Gujarat, India shares her story of living with Factor V deficiency and championing women’s equality, Natalie presents a recent NBC story on the rise of depression, we discuss Takeda’s acquisition of Shire, and Hope For Hemophilia founder Jonathan James joins us for the Interview Segment. All that and more on Episode 24 of The BloodStream Podcast!
Exclusive Sponsor: Shire
Latest Ask The Expert Podcast: Episode 14 - Physical Therapy
Latest Powering Through Podcast: Episode 16 - HANY's Family Education Conference
Like Segment: Major depression on the rise among everyone, new data shows
Share Segment: Nabila Husseni- Strength
Comment Segment: Japan's Takeda clinches $62 billion Shire Deal
Interview Segment: Hope for Hemophilia
Community News in 60 Seconds:
Hemlibra Named a Breakthrough Therapy for Hemophilia A Without Inhibitors
On World Hemophilia Day, Bioverativ Shares Success Stories from the Developing World
CRISPR “One Shot" Cell Therapy for Hemophilia Developed
Gene-Editing Study in Monkeys Sets Stage for Further HIV Cure Research
Gene Therapy Injected Into Dog Muscle Fares Well in Hemophilia B Study
Hemophilia therapy could be first drug with $1M price tag: 3 things to know
Seattle Plans to Build an AIDS Memorial Called The AMP
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During this week long special edition of The BloodStream Podcast, host Patrick James Lynch posts daily recaps of the World Federation of Hemophilia's World Congress, held in Glasgow, Scotland from May 20th to May 24th, 2018. #WFH2018
Connect with BloodStream:
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Find all of our bleeding disorders podcasts on BloodStreamMedia.com
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This month on The BloodStream Podcast, we discuss how one executive director in China has creatively given hope, dignity and income to her patients, we take you through how to stay fit and healthy while travelling, and we introduce a brand new game here on the BSpod. Plus, Hannah Lutz shares her story of life with Type 3 Von Willebrand Disease and Michael Hargett- the hemophiliac who lost 280 pounds and became the first person with hemophilia to undergo a heart transplant- joins us as today’s interview guest to discuss his remarkable journey. All that and more on Episode 21 of The BloodStream Podcast!
Exclusive Sponsor: Shire
Remembering Barry Haarde: Powering Through HFA 2016
Like Segment: How to Fit in Exercise While You Travel
Share Segment: Hannah Lutz - Type Three Girl
Comment Segment: How Paper and Scissors Gave Back Dignity to Hemophilia Patients
Interview Segment: Michael Hargett’s NewHeart4Mike.com website
Community News in 60 Seconds:
Parting Shots:
Other Links of Interest
BloodFeed:
Connect with BloodStream:
Email mailbag@bloodstreammedia.com
Find all of our bleeding disorders podcasts on BloodStreamMedia.com
Subscribe to BloodStream:
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This month on The BloodStream Podcast, Shire and Roche are locked up in a legal dispute related to Hemlibra, what does this mean and will it impact patients’ ability to receive Hemlibra? We discuss in today’s Comment Segment. A New York Times article examines why the United States spends so much more money on healthcare than any other country in a story presented by Natalie in our Like Segment, and entrepreneur and hemo dad Mark Kenny shares his compelling story and perspective during our Share Segment. Plus Natalie and I sit down with hemo mom (and Patrick’s mom!) Susan Lynch to get her perspective of being introduced to hemophilia in the mid-1980’s and how she navigated being a single parent of two kids with hemophilia during the advent of recombinant products and prophylaxis. All that and more on this Episode 20 of The BloodStream Podcast!
Exclusive Sponsor: Shire
Like Segment: Why the US spends so much more money on other nation’s than Healthcare.
Share Segment: Mark Kenny: Entrepreneur and Hemo Dad
Comment Segment: Shire and Roche locked in legal dispute over Hemlibra.
Links:
From Biopharma Dive, “Shire looks to stall Hemlibra impact with court injunction”
From Reuters, “Roche, Shire court fight escalates over haemophilia drug”
From Shire, “Shire Files Preliminary Injunction Against Roche to Protect Its Intellectual Property”
Parting Shots:
Syria allows some patients to leave besieged area
Von Willebrand Disease in Dogs: Symptoms, Causes, & Treatments
Other Links of Interest
World Federation of Hemophilia’s Government Support in Armenia
Chris Bombardier’s Adventures of a Hemophiliac Facebook Page
BloodFeed:
Connect with BloodStream:
Email mailbag@bloodstreammedia.com
Find all of our bleeding disorders podcasts on BloodStreamMedia.com
Subscribe to BloodStream:
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This month on The BloodStream Podcast, Hemlibra is FDA approved and the first non-factor replacement therapy to treat people with hemophilia A (and inhibitors) is now on the market, we’ll discuss that along with other major product development takeaways from the American Society of Hematology’s Annual Meeting held earlier this month during our Comment Segment. Natalie will present a story on how new HIV guidelines are revolutionizing patients lives in the Like Segment, and Community Member Angel Parrett shares her story of living with Factor 1 deficiency in today’s Share Segment. Plus, Patrick sits down with National Hemophilia Foundation CEO Val Bias to review some of the major community highlights from 2017, and to look ahead at what’s to come in 2018. All that and more on Episode 19 of The BloodStream Podcast.
Exclusive Sponsor: Shire
Like Segment: ‘I don’t feel like I’m a threat anymore.’ New HIV guidelines are changing lives.
Share Segment: Angel Parrett: One In A Million: Factor 1 Deficiency
Comment Segment: Hemlibra is FDA Approved & Major Takeaways from #ASH17
Hemlibra is FDA approved for adult and pediatric patients with severe hemophilia A and inhibitors.
AAV5-Factor VIII Gene Transfer in Severe Hemophilia A
Why Spark Therapeutics Stock Dropped Following #ASH17
Gene Therapy Nearly Eliminates Hemophilia B Bleeding Episodes, Trial Shows
Shire, Rani Therapeutics Collaborate on Pill to Treat Hemophilia A.
Guy Young, MD, on Recent Revolutions in Hemophilia Treatment
Other Links of Interest
Patrick discussing hemophilia and Gene Therapy on BBC’s Open Source (Interview starts at 46:50)
Stop The Bleeding! - "Mental Health, or HoCheeCo"
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This month on The BloodStream Podcast, we interview actress Alex Borstein who’s best known as the voice of Lois on “Family Guy.” Alex talks about her life as an entertainer, a symptomatic carrier and a hemo mom. In our Like Segment, Natalie introduces us to the Feldenkrais Method and how it’s being used to manage chronic pain. In our Share Segment, New York City Hemophilia Chapter member Nicole Angeles shares her story of living with von Willebrand Disease, and some of the very challenging decisions it’s forced her to make. Patrick highlights Jonathan Cohn’s excellent HuffPost piece about the ousted Iowa teen with hemophilia whose insurance expense Wellmark Blue Cross Blue Shield explicitly cited to justify pulling out of the Iowa health care markets. What does this story tell us about the future of the Affordable Care Act? Find out now on Episode 18 of The BloodStream Podcast.
Exclusive Sponsor: Shire
Like Segment: The Feldenkrais Method and Chronic Pain
Share Segment: Nicole Angeles’ “VWD & Me.”
Comment Segment: An Iowa Teenager Didn’t Wreck His State’s Health Care Market. Here’s Who Did.
Alex Borstein Interview
Other Links of Interest
BloodFeed:
This month on The BloodStream Podcast, we spotlight “Factor Revolution”, BloodStream Media’s new three-part series covering the history of treatment in hemophilia; Natalie takes us through the five things all new moms need in our Like Segment; “Factor Revolution” Producers Ryan Gielen and Seth Kirschner introduce themselves and provide a window into their work in our Share Segment; Patrick highlights recent news related to medical marijuana/cannabis use for pain management; and finally sportswriter and hemo dad Dan Levy - perhaps better known as the dad of #IronMax - shares his perspective on media, awareness, and more! Listen now on Episode 17 of The BloodStream Podcast.
Exclusive Sponsor: Shire
Like Segment: Five things all new mothers need.
Share Segment: “Factor Revolution” Producers Ryan Gielen and Seth Kirschner share their experience of building relationships with the bleeding disorders community.
Comment Segment: Medical cannabis can help reduce our nation's pain epidemic || The Hill
Dan Levy Interview
Other Links of Interest
BloodFeed:
Powering Through Podcast
http://poweringthrough.org/podcast
Ask The Expert Podcast
BloodStream Media is proud to present The Factor Revolution: The Last 60 Years in Hemophilia Treatment, a three-episode special series with over forty interviews from community members, doctors, experts and advocates. We take a deep look at the history of factor treatment from the 1950's to today. The Factor Revolution pulls together source material, news reports, white papers, and original audio content from the film Bad Blood and the "HIV Story Project."
Episode 2: The Contamination Crisis pulls together first-hand accounts from survivors of the HIV/AIDS outbreak, often referred to in our community as "the contamination crisis." This series - and especially this episode - was created in partnership with The HIV Story Project and the seminal documentary film, Bad Blood.
Exclusive Sponsor for The Factor Revolution: Shire
LINKS:
- ISHIM.NET - “Who Discovered Hemophilia” (Abdul Nasser Kaadan MD, PhD*, Mahmud Angrini MD**)
- JOURNAL OF CLINICAL INVESTIGATION - “HEMOPHILIA. II. SOME PROPERTIES OF A SUBSTANCE OBTAINED FROM NORMAL HUMAN PLASMA EFFECTIVE IN ACCELERATING THE COAGULATION OF HEMOPHILIC BLOOD”
- HEMOPHILIA FEDERATION OF AMERICA (HFA):
“1970s: Living with Hemophilia”
“Medical Bullentin #7 Chapter Advisory #8”
“1982—AIDS Discovered Among Patients with Hemophilia”
“1980’s: Hemophilia, HIV/AIDS, and Hepatitis C”
- HEMOPHILIA NEWS TODAY - “A Brief History of Hemophilia Treatment”
- AMERICAN SOCIETY OF HEMATOLOGY - “Hemophilia: From Plasma to Recombinant Factor”
- NATIONAL HEMOPHILIA FOUNDATION (NHF) - “History of Bleeding Disorders”
- NBC's Earliest Report on AIDS 1982
- ABC News Nightline AIDS - 12/17/1982
- 1982 - 1992 News Clips On HIV/AIDS (The First Ten Years)
- BLOODJOURNAL - “Recombinant factor VIII products and inhibitor development in previously untreated boys with severe hemophilia A”
- WORLD FEDERATION OF HEMOPHILIA (WFH)
“The Tragic History of AIDS in the Hemophilia Population, 1982-1984”
- THE NATIONAL CENTER FOR BIOTECHNOLOGY INFORMATION - “HIV And The Blood Supply: An Analysis Of Crisis Decision Making”
- CENTER FOR DISEASE CONTROL (CDC) - “Current Trends Prevention of Acquired Immune Deficiency Syndrome (AIDS): Report of Inter-Agency Recommendations”
- HEALTH RESOURCES & SERVICES ADMINISTRATION - “Who Was Ryan White”
- LINKEDIN - “Hemophilia market is boiling- new players, new products and drug wars.”
- GENETIC ENGINEERING & BIOTECHNOLOGY NEWS - “Phase III Study Shows Roche’s Hemophilia Drug Emicizumab Prevents Bleeding in Children”
- PBS (PUBLIC BROADCAST SYSTEM) - “Bad Blood - A Cautionary Tale” Directed by Marilyn Ness, Written by Marilyn Ness and Sheila Curran Bernard
INTERVIEWS:
Bobby Wiseman (via the HIV Story Project) - Board Member of Hemophilia Council of California
Carl Weixler (via the HIV Story Project) - Board of Directors for and President of the Committee of Ten Thousand
Dana Francis (via the HIV Story Project) - The clinical social worker with the Adult Hemophilia Treatment Team at UCSF
Glenn Pierce (via the HIV Story Project) - Medical and Scientific Advisory Council (MASAC) for NHF; Previously served as president of the Board of NHF
Jeanne White-Ginder (via the HIV Story Project) - Serves on the advisory board of The AIDS Institute; Advocate & Mother of Ryan White
Louise & Clifford Ray (via the HIV Story Project) - Advocates & Parents of Ricky Ray
Mark Skinner - Former President of NHF and WFH; Current member of the Federal Advisory Committee on Blood Safety
Michelle Rice - Senior VP of external affairs for the National Hemophilia Foundation
Randy Curtis - President of the Hemophilia Council of California
Val Bias (via the HIV Story Project) - CEO of NHF
Dana Kuhn - President and founder of Patient Services Incorporated
Sue Geraghty - Nurse Coordinator at the University of Colorado Denver Hemophilia and Thrombosis Center
Various interviews from the film Bad Blood.
LINKS ON THE LGBT COMMUNITY & THE HIV/AIDS PANDEMIC
US Federal Govt Statistics & Timeline, HIV.Gov
National Institutes of Health (NIH)
Huffington Post Top Books on HIV AIDS
Connect with BloodStream:
Find all of our bleeding disorders podcasts on BloodStreamMedia.com
BloodFeed: https://www.bloodfeed.com
Powering Through Podcast: http://poweringthrough.org/podcast
Ask The Expert Podcast: http://bloodstreamexpert.com
Email mailbag@bloodstreammedia.com
Subscribe to BloodStream:
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BloodStream Media is proud to present The Factor Revolution. The last sixty years in hemophilia treatment, with over forty interviews from community members, doctors, and advocates. We take a deep look at the history of factor treatment in the 1950's to today. The Factor Revolution pulls together source material, news reports, white papers, and original audio content from the film Bad Blood and the "HIV Story Project".
Exclusive Sponsor for The Factor Revolution: Shire
ISHIM.NET - “Who Discovered Hemophilia” (Abdul Nasser Kaadan MD, PhD*, Mahmud Angrini MD**)
ENCYCLOPEDIA.COM - “Hemophilia Throughout History”
JOURNAL OF CLINICAL INVESTIGATION - “HEMOPHILIA. II. SOME PROPERTIES OF A SUBSTANCE OBTAINED FROM NORMAL HUMAN PLASMA EFFECTIVE IN ACCELERATING THE COAGULATION OF HEMOPHILIC BLOOD”
HEMOPHILIA FEDERATION OF AMERICA (HFA)
“1970s: Living with Hemophilia”
“Medical Bullentin #7 Chapter Advisory #8”
“1982—AIDS Discovered Among Patients with Hemophilia”
“1980’s: Hemophilia, HIV/AIDS, and Hepatitis C”
HEMOPHILIA NEWS TODAY - “A Brief History of Hemophilia Treatment”
AMERICAN SOCIETY OF HEMATOLOGY - “Hemophilia: From Plasma to Recombinant Factor”
NATIONAL HEMOPHILIA FOUNDATION (NHF) - “History of Bleeding Disorders”
NBC's Earliest Report on AIDS 1982
ABC News Nightline AIDS - 12/17/1982
1982 - 1992 News Clips On HIV/AIDS (The First Ten Years)
BLOODJOURNAL - “Recombinant factor VIII products and inhibitor development in previously untreated boys with severe hemophilia A”
WORLD FEDERATION OF HEMOPHILIA (WFH)
“The Tragic History of AIDS in the Hemophilia Population, 1982-1984”
THE NATIONAL CENTER FOR BIOTECHNOLOGY INFORMATION - “HIV And The Blood Supply: An Analysis Of Crisis Decision Making”
CENTER FOR DISEASE CONTROL (CDC) - “Current Trends Prevention of Acquired Immune Deficiency Syndrome (AIDS): Report of Inter-Agency Recommendations”
HEALTH RESOURCES & SERVICES ADMINISTRATION - “Who Was Ryan White”
LINKEDIN - “Hemophilia market is boiling- new players, new products and drug wars.”
GENETIC ENGINEERING & BIOTECHNOLOGY NEWS - “Phase III Study Shows Roche’s Hemophilia Drug Emicizumab Prevents Bleeding in Children”
PBS (PUBLIC BROADCAST SYSTEM) - “Bad Blood - A Cautionary Tale” Directed by Marilyn Ness, Written by Marilyn Ness and Sheila Curran Bernard
INTERVIEWS:
Bobby Wiseman (via the HIV Story Project)
Board Member of Hemophilia Council of California
Carl Weixler (via the HIV Story Project)
Board of Directors for and President of the Committee of Ten Thousand
Dana Francis (via the HIV Story Project)
The clinical social worker with the Adult Hemophilia Treatment Team at UCSF
Glenn Pierce (via the HIV Story Project)
Medical and Scientific Advisory Council (MASAC) for NHF
Previously served as president of the Board of NHF
Jeanne White-Ginder (via the HIV Story Project)
Serves on the advisory board of The AIDS Institute
Advocate & Mother of Ryan White
Louise & Clifford Ray (via the HIV Story Project)
Advocates & Parents of Ricky Ray
Mark Skinner
Former President of NHF and WFH
Current member of the Federal Advisory Committee on Blood Safety
Michelle Rice
Senior VP of external affairs for the National Hemophilia Foundation
Randy Curtis
President of the Hemophilia Council of California
Val Bias (via the HIV Story Project)
CEO of NHF
Dana Kuhn
President and founder of Patient Services Incorporated
Sue Geraghty
Nurse Coordinator at the University of Colorado Denver Hemophilia and Thrombosis Center
Various interviews from Bad Blood.
LINKS ON THE LGBT COMMUNITY & THE HIV/AIDS PANDEMIC
US Federal Govt Statistics & Timeline, HIV.Gov
National Institutes of Health (NIH)
Huffington Post Top Books on HIV AIDS
Connect with BloodStream:
Find all of our bleeding disorders podcasts on BloodStreamMedia.com
BloodFeed: https://www.bloodfeed.com
Powering Through Podcast: http://poweringthrough.org/podcast
Ask The Expert Podcast: http://bloodstreamexpert.com
Email mailbag@bloodstreammedia.com
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Andy Slavitt, the former head of Medicare, Medicaid, and the Affordable Care Act (ACA) under President Obama, joins us for a very special interview segment on the importance of the ACA for people with hemophilia. UK-based community advocate Laurence Woollard provides insight into the UK bleeding disorders community and his personal journey in hemophilia advocacy. Natalie leads a New York Times story on the debate surrounding how to price gene therapy treatments, and Patrick provides an overview of the recent, terrible news of a patient death during the Fitusrian clinical trial - what happened, what it means, and what happens next? Listen now on Episode 16 of The BloodStream Podcast.
Exclusive Sponsor for Episode 16: Shire
Like Share Comment Segments
Like: NYT: New Gene-Therapy Treatments Will Carry Whopping Price Tags
Share: Laurence Woollard’s “The Endeavour to Progress”
Comment: Alnylam Suspends All Trials of Fitusiran After Hemophilia A Patient Dies in Phase 2 Study // Story from RareDr.com // Story from FierceBiotech
Andy Slavitt Interview
Other Links of Interest
BloodFeed:
Powering Through Podcast
http://poweringthrough.org/podcast
Ask The Expert Podcast
We preview National Hemophilia Foundation’s (NHF) 2017 Annual Meeting! Interviews include NHF CEO Val Bias, NHF staff and volunteers. During our Like, Share, Comment segment, Natalie and I discuss a recent article profiling companies with notably strong employee health benefits, a World Federation of Hemophilia (WFH) article highlighting recent success in their Twinning Program, and community member Tai-yan Chou-Kudu presents Hemophilia - Not Just Physical, a spoken-word piece on severe hemophilia A’s impact on her life and studies. All of that, plus a look at a new inquiry in the UK into the blood contamination crisis. Listen now on Episode 15 of The BloodStream Podcast!
Exclusive Sponsor for Episode 15:
Like Share Comment
Like: Nine Companies Hiring Now That Cover 100% of Employee Health Insurance Premiums
Share: Tai-yan Chou-Kudu’s “Hemophilia - Not Just Physical” (LINK TO BLOG)
Comment: Twinning successes in 2016, Inquiry to contaminated blood scandal in UK
Other Links of Interest
Powering Through Podcast Ep 7 feat. four HTC hematologists: http://bit.ly/PTpodEp7
Ask The Expert Podcast: http://BloodStreamExpert.com
The Haemophilia Society’s Blog: http://haemophilia.org.uk/blog/
Outreach and Identification in Indonesia video from the World Federation of Hemophilia’s Humanitarian Aid Program: http://bit.ly/WFHIndonesia
Believe @ #NHF2017 Video: VIDEO NOT YET AVAILABLE.
Believe @ #NHF2017 Printed Schedule: http://BelieveLTD.com/NHF2017
https://www.hepmag.com/article/coffee-cannabis-may-protect-liver-hiv-hcv
BloodFeed:
Powering Through Podcast
http://poweringthrough.org/podcast
Ask The Expert Podcast
Description:
In this episode, Patrick and Natalie review some advocacy best practices, take a look at the increasingly popular cryotherapy, share one mom's (anonymous) story of addiction, hemophilia and family, and during the Sit-Down segment, Patrick speaks with NHF board member Jorge de la Riva about how NHF's board works, his views on health and social advocacy, and his family's personal story of being introduced to hemophilia. All this and more on Episode 9 of BloodStream! Click "Episodes" above to stream or download.
Sponsors for Episode 8:
Presenting Sponsor: Stop The Bleeding! (STB!) Link to STB! Website
Supporting Sponsor: Shire Link to BleedingDisorders.com
Trending Topics:
EMA Names Investigational Gene Therapy, BMN 270, a Priority Medicine for Hemophilia A (Link)
FDA Gives Breakthrough Designation to Hemophilia Gene Therapy (Link)
Daily Infusion of Low-dose Factor VIII Found to Benefit Some Hemophilia A Patients (Link)
LA Kelley Launches a New Edition of Raising a Child With Hemophilia (Link) Learn more about all of LA Kelley’s offerings (Link)
Bioverativ Officially Spins-Off of Biogen’s Hemophilia Business (Link)
HFA 2017 Policy & Government Relations Internship (Link)
New and Improved Blood Brotherhood Forum from HFA (Link)
Bioverativ Officially Spins-Off of Biogen’s Hemophilia Business (Link)
Like Share Comment:
Like: What is cryotherapy and is it effective/safe for people with chronic pain and/or joint problems? Link to Article.
Share: A community Mom shares her story on addiction, family, and bleeding disorders. Link to Article from HFA: Opioids, Addiction, & Bleeding Disorders (Jan 2016).
Comment: Advocacy, Washington Days, and how to advocate an advocate community member: Link to Article from NHF: How to Advocate to Protect Access to Health Insurance. Link to NHF’s Share Your Story Campaign
Sit-Down Segment with NHF Board Member Jorge de la Riva
Jorge on Twitter Link
Connect with BloodStream:
Email mailbag@bloodstreammedia.com
Find all of our bleeding disorders podcasts on BloodStreamMedia.com
Subscribe to BloodStream:
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Believe Limited is excited to announce the launch of not one but TWO new podcasts! Ask the Expert and The Powering Through Podcast join our flagship podcast BloodStream™ to round out the growing BloodStream Media Network. Read a bit more about both podcasts below and make sure to subscribe on your favorite platform! Check out BloodStreamMedia.com!
Ask The Expert features a HTC hematologist or other healthcare expert answering listener-submitted questions about all things bleeding disorders. Ask The Expert is created and produced by Believe Limited and hosted by Patrick James Lynch. Listen and Subscribe!
The Powering Through Podcast features empowering, live panel conversations on obstacles, challenges, and what it takes to overcome, held for the benefit of the bleeding disorders community. The Powering Through Podcast is sponsored by NCHS, produced by Believe Limited, and hosted by Patrick James Lynch. Listen and Subscribe!
BloodStream Media on Social:
Want to submit a question for Ask The Expert? Want to send in an idea for a segment on The BloodStream Podcast? Want to find out more about Powering Through events in your area? Email BloodStream: mailbag@bloodstreammedia.com.
In this episode, Patrick & Natalie review recent headlines of interest, introduce a patient perspective on life with sickle cell disease, discuss Believe Limited's upcoming documentary about hemophiliac mountaineer Chris Bombardier's summiting of Mount Everest, and discuss football, finance, and five tips toward improving money management during the Sit-Down segment with special guest Josh Gordy, NFL Super Bowl champion turned financial coach. All this and more on Episode 8 of BloodStream!
Sponsors for Episode 8:
Presenting Sponsor: Stop The Bleeding! (STB!). Link to STB! Website.
Supporting Sponsor: Shire. Link to BleedingDisorders.com.
Contact BloodStream:
Submit a question for our Ask The Expert series (premiering 1/30) by emailing mailbag@bloodstreampod.com.
Trending Topics:
Registration is now open for:
The FDA announces a Class 1 recall from Nurse Assist Inc of Normal Saline Flush syringes. Link
Steps-For-Living outlines Exercise and Activity Options for people with bleeding disorders. Link
NBC Nightly News catches up with “Iron Max.” Link
NHF survey seeking men with hemophilia age 50 or older. Link
Like Share Comment:
Meditation may help alleviate chronic pain, study shows. Link
Meditation App: Headspace. Link
Delisa O’Brien’s tumblr on diet, health, and sickle cell disease. Link
Mt. Everest climb by severe hemophiliac Chris Bombardier is the subject of new Believe LTD documentary. Link
Sit-Down Segment with NFL Super Bowl Champion Josh Gordy
Josh Gordy’s Freedom Financial Coaching Website. Link
Freedom Financial Coaching Facebook Page. Link
Dave Ramsey Financial Coaching Website. Link
Josh on Twitter. Link
BloodStream on Social:
BloodStream Host Patrick James Lynch on Twitter and Instagram.
Subscribe to BloodStream:
iTunes: http://bit.ly/bloodstreamitunes
Stitcher: http://bit.ly/bloodstreamstitcher
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In this episode, Patrick reviews some recent headlines in our Trending Topics segment, shares some takeaways from the American Society of Hematology’s 2016 Annual Meeting during our Like, Share, Comment segment, and during a special Sit-Down segment, we hear from with Executive Directors of patient organizations and chapters from around the country on what 2016 was, and what 2017 could be. The good, bad and otherwise. All this and more on Episode 7 of BloodStream.
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In Episode 6, Patrick introduces a new BloodStream co-host, touches on some headlines of interest in our Trending Topics segment, dives into what the recent election may mean for the bleeding disorders community in our Like, Share, Comment segment, and discusses disabilities, entertainment, and the importance of partnership with Ali Stroker, the first Broadway performer who uses a wheelchair. All this and more on Episode 6 of BloodStream!
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In Episode 5, we take a look at recent community news during our Trending Topics Segment- including a new virtual reality game designed to help reduce kids’ anxiety during infusions and a new needle that won’t cause bleeding after it’s removed, and we take a deeper dive into three stories during our Like, Share, Comment Segment. This month we also feature my Sit Down with the iconic HIV/AIDS and hemophilia advocate Jeanne White-Ginder. All that and more, on episode 5 of BloodStream!
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Description
In Episode 4, we take a look at recent community news during our Headlines Segment- including updates regarding the Zika virus, community advocacy efforts, and data collection, and we take a deeper dive into three stories- including one on zombies!- during our Like, Share, & Comment Segment. This month we also feature a Special Interview Segment! Made possible by our Presenting Sponsor NCHS, our Special Interview Segment features great moments from Powering Through, a nationwide speaker series on obstacles and challenges, and includes soundbites from community members and inspiring friends such as:
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In this episode, we take a look back at a historic summer that saw the National Hemophilia Foundation's (NHF) Annual Meeting and the World Federation of America's (WFH) World Congress convene in Orlando for the largest gathering ever of people with bleeding disorders. In addition to featuring some conference related content, our Like Share Comment segment highlight a story on Elijah Warren, a high school swimming star with hemophilia as well as a recent article from John Hopkins University on the power of humor in healthcare. Finally, we close this month's episode with a remembrance of Matt Stinger, a community member and advocate who passed unexpectedly this month at 33 years old.
Headlines
Novo Nordisk’s B-HERO-S study has found, to the surprise of some, that many patients with mild or moderate hemophilia B in the United States experience their condition negatively impacting their career, education, and recreational activities- something that can be overlooked in those affected by mild or moderate hemophilia as opposed to severe. Link.
High schooler Federico Parres is one of five team members on the VEX Robotics World Championship Team F, responsible for creating Caerus-7, a ball-flinging robot. Federico lives with severe hemophilia A and plans on becoming an engineer one day. Link.
Bayers’ Hemophilia Awards Program recently announced 16 physicians and researchers from 11 countries who will receives grant money totaling about two million dollars, including 6 individuals from the United States. This is the fourteenth year Bayer has run this program. Link
A study published in the European journal Haematologica examines a new potential model for how to treatment patients with hemophilia A who undergo surgery. Something I personally find interesting given our ongoing need to learn more about aging with hemophilia. Link
The FDA has approved a new needleless reconstitution device called Baxject III for Shire’s long-lasting factor FVIII therapy Adynovate. For those familiar, it is a very similar device to that which is found in Advate. Link
Two medical advisory updates have been announced by the National Hemophilia Foundation regarding existing products:
NHF Medical Advisory 419 (four-one-nine) states that Bayer has announced a voluntary recall of two lots of Kogenate FS for a loss of potency. The lot numbers are 270TN1C and 270R978. For more information or to arrange for an exchange please call the Recall Processing Center at 855-838-5782. Link
And NHF Medical Advisory 420 (four-two-zero) states that CSL Behring has announced a voluntary recall of two lots of Helixate FS for a loss of potency. Those lot numbers are 270TN1G and 270R979. For more information or to arrange an exchange for these products, call CSL Behring’s Customer Service at 1800-683-1288. Link
Product Related Headlines (not mentioned in the show)
Genentech/Roche has released encouraging Phase 1/2 extension results for their investigational subcutaneous medicine, emicizumab-previously referred to as ACE910. Link
The Netherlands-based uniQure, a company self-described as a leader in human gene therapy, announced encouraging clinical data from their ongoing Phase 1/2 trail of AMT-060, an investigational gene therapy for patients with hemophilia B. Link
BioMarin has presented positive interim data from a Phase 1/2 clinical trial of BMN 270, an investigational gene therapy for people severe hemophilia A. The company has announced intent to begin another study with an eye toward regulatory approval in both the US and Europe. Link
CSL Behring’s hemophilia B therapy Idelvion shows promise after encouraging Phase 3 trial results. Link The company also posted positive results from a Phase III study from its FDA approved, hemophilia A treatment AFSTYLA, unique for being the first and only single-chain recombinant product available in the US.
Spark Therapeutics and Pfizer received Breakthrough Therapy Status from the FDA for expedited development of a hemophilia B gene therapy treatment SPK-9001. The treatment is currently also undergoing a Phase 1/2 clinical trial. Link.
Alnylam Pharmaceuticals announced positive results of a Phase 1 trial for their subcutaneous therapy fitusiran, designed to treat patients with both hemophilia A and B, with or without inhibitors. Link.
Like Share Comment Segment
NHF Daily, a digital recap of Annual Meeting. Link
WFH The Congress Daily. Link
High school swimming star Elijah Warren. Link
John Hopkins University article on therapeutic humor. Link
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Listen to the full conversation w/ Dr. Glenn pierce in this piece of bonus content from Episode 1 of BloodStream.
In Episode 1, Patrick talks with guest Dr. Glenn Pierce about inhibitors, the new SIPPET study and the state of bleeding disorders around the world. This, plus our June "Likes, Comments, and Shares" featuring stories about notable upcoming conferences and one young man's ambitious goal to raise money and awareness for hemophilia. All this and more, on this episode of Bloodstream!