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BloodStream

A monthly, 360-degree look at the bleeding disorders community, complete with news, interviews, and informed opinionating. Hosted by Patrick James Lynch. Produced by Believe Limited.
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Now displaying: Category: Health
May 24, 2018

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

WFH's Congress News Daily.

Connect with BloodStream:

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Facebook Page

BloodStream Twitter Account

Subscribe to BloodStream:

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TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

Spotify: http://spoti.fi/2nNPhui

May 23, 2018

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

Connect with BloodStream:

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Facebook Page

BloodStream Twitter Account

Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

Spotify: http://spoti.fi/2nNPhui

May 21, 2018

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

// Depression Symptoms  

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

 

BloodFeed:

https://www.bloodfeed.com

Connect with BloodStream:

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Facebook Page

BloodStream Twitter Account

Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

Spotify: http://spoti.fi/2nNPhui

May 20, 2018

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:

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Facebook Page

BloodStream Twitter Account

Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

Spotify: http://spoti.fi/2nNPhui

Feb 19, 2018

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:

#EAHAD2018 on Twitter

 

Other Links of Interest

 

BloodFeed:

https://www.bloodfeed.com

Connect with BloodStream:

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Facebook Page

BloodStream Twitter Account

Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

Spotify: http://spoti.fi/2nNPhui

Jan 15, 2018

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

Woman awarded £9m damages for care of son who 'should not have been born'

 

Other Links of Interest

World Federation of Hemophilia’s Government Support in Armenia

Chris Bombardier’s Adventures of a Hemophiliac Facebook Page

Powering Through Podcast

Ask The Expert Podcast

 

BloodFeed:

https://www.bloodfeed.com

Connect with BloodStream:

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Facebook Page

BloodStream Twitter Account

Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

Dec 18, 2017

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)

Powering Through Podcast

Ask The Expert Podcast

TreatmentForAll.org

Stop The Bleeding! - "Mental Health, or HoCheeCo"

 

BloodFeed:

https://www.bloodfeed.com

Connect with BloodStream:

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Facebook Page

BloodStream Twitter Account

Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

Nov 20, 2017

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:

https://www.bloodfeed.com

 

Oct 16, 2017

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:

https://www.bloodfeed.com

Powering Through Podcast

http://poweringthrough.org/podcast

Ask The Expert Podcast

http://bloodstreamexpert.com

 

 

Oct 9, 2017

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”

“Recombinant FVIII product associated with higher risk of inhibitor development in newly diagnosed, previously untreated patients with severe hemophilia A”

- 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

Ryan White Care Act

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

BloodStream Facebook Page

BloodStream Twitter Account

Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

Oct 2, 2017

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”

“Recombinant FVIII product associated with higher risk of inhibitor development in newly diagnosed, previously untreated patients with severe hemophilia A”

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

Ryan White Care Act

 

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

BloodStream Facebook Page

BloodStream Twitter Account

Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

Sep 18, 2017

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:

https://www.bloodfeed.com

Powering Through Podcast

http://poweringthrough.org/podcast

Ask The Expert Podcast

http://bloodstreamexpert.com

 

 






Aug 21, 2017

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:

https://www.bloodfeed.com

Powering Through Podcast

http://poweringthrough.org/podcast

Ask The Expert Podcast

http://bloodstreamexpert.com

 





Feb 20, 2017

 

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

BloodStream Facebook Page

BloodStream Twitter Account

 

Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

 

Feb 12, 2017

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 LynchListen and Subscribe!

  • Disclaimer: The content contained within Ask The Expert is for informational purposes only. Please consult your health care provider before making any decisions about treatment. 

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 LynchListen and Subscribe!

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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.

Jan 16, 2017

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:

  • National Hemophilia Foundation (NHF) hosted Washington Days (March 8th-10th). Link
  • Hemophilia Federation of America’s (HFA) 2017 Symposium (April 6th-9th). Link
  • NHF’s 2017 Annual Meeting (August 24th-26th). Link

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

 

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Dec 19, 2016

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.

Sponsors for Episode 7:

Trending Topics:

  • Hemophilia News Today publishes articles on “Pain and pain management in hemophilia.” Link.
  • DailyMail.com reports on, “How a blood test could save you [UK Women] from infertility.” Link
  • Blood Journal publishes, “Patient Reported Outcomes to Assess Quality of Hemophilia Care in North India.” Link
  • MASAC publishes four new recommendations. Link

Like Share Comment:    

  • My Life, Our Future (MLOF) reaches 5,000 patients enrolled. Link
    • MLOF website: Link
    • Video on MLOF: Link
  • American Society of Hematology (ASH) Headlines of Interest:
    • Alnylam Pharmaceuticals presents interim results from study of investigational, subcutaneously-administered fitusiran (for patients with hemophilia A or B who also have inhibitors). Link
    • CSL Behring presents Phase III trial results from IDELVION (long-acting recombinant product for hemophilia B). Link
    • Novo Nordisk presents data from SMART-7 study of NovoSeven. Link
    • Sanagmo BioSciences presents data from SB-525, a gene therapy treatment currently being studied in mice and non-human primates. Link
    • Spark Therapeutics presents preliminary results from investigational, gene therapy agent SPK-9001 intended for the treatment of people with hemophilia B. Link
    • University of Pennsylvania scientists successfully cure mice with hemophilia B using CRISPR. Link
    • Octapharma announces two clinical trials studying how Wilate may be used to treat people with hemophilia A. Link
  • World AIDS Day at the National AIDS Memorial Grove Honors the Hemophilia Community.
    • Video of Powering Through panel featuring NHF CEO Val Bias, HFA CEO Kimberly Haugstad, COTT President Carl Weixler, and The Grove’s ED John Cunningham. Link
    • NHF CEO Val Bias letter regarding HIV/AIDS Memorial. Link

 

Sit-Down Segment:

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Nov 21, 2016

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!

Sponsors for Episode 6:

Trending Topics:

 

Like, Share, Comment Segment:    

  • Blood Clots Dent Hopes for Hemophilia Drug Emicizumab. Link
  • Hemophilia News Today’s Article On Emicizumab Data from World Congress. Link
  • YogaWorks Website. Link
  • HFA Responds to Election: We Are Always Here For You. Link
  • NHF Addresses Your Post-Election Health Questions. Link

Special Guest: Ali Stroker

  • Ali Stroker, Official Website. Link
  • Deaf West Theatre. Link

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Oct 17, 2016

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!

Sponsors for Episode 5:

Trending Topics:

  • The National Hemophilia Foundation launches a new series of educational webinars. Link
  • Nationwide Children’s Hospital in Ohio is piloting a virtual reality game designed to help reduce anxiety and stress in pediatric infusions. Link
  • Genetic Linkage Analysis may lead to a simple way to diagnose women carrying the gene causing hemophilia A.  Link (Story) Link (Study)
  • A self-sealing hemostatic needle that won’t cause bleeding when removed from a vein. Link
  • Two tools for patient reported outcomes address the need for personalization of outcomes Link.

Like, Share, Comment Segment:    

  • HFA Gears For Good Riders raise $130,000 for Helping Hands. Link
  • Barry Haarde completes his fifth trans-con bike ride, totaling 5,000 miles and raising over $52,000. Link
  • Alex Dowsett, the professional cyclist with hemophilia, launches Little Bleeders charity to encourage fitness and athletics for children with bleeding disorders. Link
  • Colorado’s Kyle Haas rides 500 miles through mountain passes. Link
  • Sleep resources curated and posted to The BloodStream Blog.
  • HIV now “undetectable” in British man. Link
  • Why talk of HIV cure is premature (from BBC). Link
  • Why it’s too soon to say HIV has been cured (from PopSci). Link
  • amfAR - statistics on young people and HIV (Link) and the US and HIV (Link)

The Sit Down:

  • USA Today’s Top 25 people (1982 - 2007). Link
  • The AIDS Memorial Grove. Link
  • The HIV Story Project. Link
  • Surviving Voices, a collaboration between the HIV Story Project and The Grove. Link

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Sep 19, 2016

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:

  • Cross-country cyclist Barry Haarde
  • Blues musician, Patrick Droney
  • NFL Superbowl Champion Josh Gordy
  • HIV/AIDS activist, Jeanne White-Ginder
  • And many more!

Sponsors:

Headlines Stories:

  • Plasma Protein Therapeutics Association (PPTA)'s Statement on Zika: Link
  • Food and Drug Administration's Revised Guidance on Zika: Link
  • Hemophilia News Today on Universal Case Report Form (U-CRF): Link
  • World Federation of Hemophilia's (WFH) Page on U-CRF: Link
  • Josh Gordy Educational Scholarship, 2016 Winners: Link
  • Josh Gordy H.O.P.E. Foundation: Link
  • Hemophilia Federation of America's (HFA) Premium Assistance Information (HR3742): Link
  • National Hemophilia Foundation's (NHF) Washington Days Fact Sheet: Link
  • Honoring Jeanne M Lusher, MD, Pioneer in Hemophilia: Link
  • Dr. Jeanne Lusher's Wikipedia page: Link

Like, Share & Comment Segment    

  • Kid Captain: Kinzie Hemann. Link
  • HFA's Dear Addy Piece on Mental Health and Insurance. Link
  • MentalHealth.gov's Health Insurance Page. Link
  • Downtown Devil piece on the Zombie Walk. Link
  • Phoenix New Times piece on the Zombie Walk. Link
  • Arizona Hemophilia Association's Info & Registration Page for the Zombie Walk: Link

Powering Through

  • Powering Through Official Website. Link
  • Powering Through YouTube Playlist. Link

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Aug 22, 2016

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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Jun 20, 2016

Listen to the full conversation w/ Dr. Glenn pierce in this piece of bonus content from Episode 1 of BloodStream.

Jun 20, 2016

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!

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