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:
Sponsors:
Headlines Stories:
Like, Share & Comment Segment
Powering Through
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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
BloodStream on Social
BloodStream Facebook Page
BloodStream Twitter Account
BloodStream Host Patrick James Lynch on Twitter and Instagram.
Patrick talks with guest Chris Bombardier about his quest to climb the seven summits- the highest peak on each of the seven continents- while living with severe hemophilia B. This, plus news headlines & our "Like, Share, Comment" segment for July!
Official Website: BloodStreamPod.com.
Links & References:
Baby Boomers w/ Hemophilia Story
Barry Haarde's Wheels for the World Facebook Page
Care Models For Hemophilia Management
Direct-to-consumer Marketing to People with Hemophilia
Gene-Editing Technology In People
HFA Community Survey on Community Memorial
National AIDS Memorial Grove Recognizes Hemophilia
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!