BloodStream

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

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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

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This month on The BloodStream Podcast, Dr. Steven Pipe joins us to discuss Hemlibra, the recently reported patient deaths, and what this means for our community. FDNY Lieutenant, CVS pharmacist, and FEMA volunteer Bill Patsakos joins us to discuss accounting for the bleeding disorders community during disaster relief, and advocate Maryann May shares her #ibleedtoo story. All that and more on Episode 23 of The BloodStream Podcast!

Exclusive Sponsor: Shire

Like Segment: What Is Floating?  Sensory Deprivation Benefits // Floatation Locations

Share Segment: Maryann May - #ibleedtoo 

Comment Segment: National Hemophilia Foundation: Statement From Genentech Regarding Hemlibra

Interview Segment: Eyewitness To Destruction from LA Kelley Communications

Community News in 60 Seconds:

The Ambrosio family of the New York City Hemophilia Chapter celebrated their 10th annual benefit fundraiser

CSL Plasma Introduced Miguel Angel Jiminez to children with hemophilia during a PGA Champions Tour event

Scientists in Australia have identified a gene-control mechanism that enables some individuals to produce a fetal form of hemoglobin, offsetting the severity of certain blood diseases

Precision Develops Better Way of Detecting Levels of Clotting Factor Inhibitors

BioMarin Wins Award for Getting Gene Therapy Facility Operational Ahead of Time

Many Hemophilia B Patients Have Pain, Depression and Overall Poor Health, Study Finds

New Method May Improve Delivery of Targeted Gene Therapies   

BloodFeed:

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Find all of our bleeding disorders podcasts on BloodStreamMedia.com

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This month on The BloodStream Podcast, community member Kevin Krivosik shares his journey toward independence, Camp Casey Founder Molly Reeser joins us to share the camp’s mission and her inspiration for starting it, and we take a look a recent Forbes Magazine piece highlighting one of the many challenges in mental health treatment. And using a combination of written statements, audio recordings, and his own original writing, we say goodbye to community leader Barry Haarde. All that and more on Episode 22 on The BloodStream Podcast!

Exclusive Sponsor: Shire

Hemophilia and Young Adulthood, a new podcast series: BloodLinePod.com

Bleeding Disorders Awareness Month: RedTieCampagin.org

Like Segment: Psychiatrist Shortage Escalates As U.S. Mental Health Needs Grow

Share Segment: Kevin Krivosik - “Third Time’s a Charm”

Comment Segment/Remembering Barry Haarde: Remembering the Rain: Barry Haarde

Interview Segment: Camp Casey Founder Molly Reeser

Community News in 60 Seconds:

Patient Advocacy Groups Worldwide Plan Events Marking Rare Disease Day (Feb 28)

The National Heart, Lung, and Blood Institute to host workshop on Factor VIII Inhibitors May 15-16 in Bethesda, Md.

The UK’s First Genome-Editing Study Is Underway with Phase ½ on SB-FIX

Hemlibra receives approval in Europe

Adynovate receive approval in South Korea

Eloctate show “promise” for use in immune tolerance induction (ITI) therapy.

BloodFeed:

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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:

• Registration for NHF’s Washington Days
• Registration for NHF’s Bleeding Disorders Conference
• Patient Access Network Foundation Opens Hemophilia Patient Assistance Fund
• Hemophilia Puts Damper on Patient’s Sex Life and Health Status, Study Reports
• My Life, Our Future to be Featured in CDC Public Health Webinar
• NORD Launches 7,000 Mile Rare Movement
• Rebinyn Now Available for the Treatment of Hemophilia B
• Sanofi, Facing Threat From Generics, Moves to Buy Hemophilia Drug Makers (Bioverativ)
• Europe’s CHMP Recommends Approval of Hemlibra to Treat Hemophilia A (with Inhibitors)
• Shire Granted European Union Marketing Authorization for Adynovi

Parting Shots:

#EAHAD2018 on Twitter

Other Links of Interest

• Project CALLS from Hemophilia Federation of America

• HTCtour.org- Stop The Bleeding’s Guided Tour of a Hemophilia Treatment Center
• BloodStreamMedia.com

• Powering Through Podcast
• Ask The Expert Podcast

BloodFeed:

https://www.bloodfeed.com

Connect with BloodStream:

Email [email protected]

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Facebook Page

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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

Powering Through Podcast

Ask The Expert Podcast

BloodFeed:

https://www.bloodfeed.com

Connect with BloodStream:

Email [email protected]

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Facebook Page

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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)

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 [email protected]

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Facebook Page

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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

• http://variety.com/2017/tv/news/the-marvelous-mrs-maisel-amazon-amy-sherman-palladino-albert-cheng-1202614481/

Other Links of Interest

• FDA’s announcement about "Hemlibra"
• Powering Through Podcast
• Ask The Expert Podcast

BloodFeed:

https://www.bloodfeed.com

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." 

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 [email protected]

BloodStream Facebook Page

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Subscribe to BloodStream:

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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

• Why (some of) the GOP is Pushing for Medical Marijuana Research || Rolling Stonen
• Justice Department at Odds with DEA Over Marijuana Research. || Washington Post
• Sen. Hatch Introduces Medical Marijuana Research Bill || Orrin Hatch Campaign Website

Dan Levy Interview

• Marvel Honors Boy Fighting Hemophilia With Cameo in ‘Iron Man’ Comic | NBC Nightly News
• Inspiring America: Checking In On Real Life Super Hero Kid ‘Iron Max’
• Hearts 4 Hemophilia

Other Links of Interest

• Powering Through Podcast
• Ask The Expert Podcast

BloodFeed:

https://www.bloodfeed.com

Powering Through Podcast

http://poweringthrough.org/podcast

Ask The Expert Podcast

http://bloodstreamexpert.com