NHF Addresses Post-Election Questions on Affordable Care Act and Advocacy
Val Bias, CEO of the NHF, posted a positive letter about potential changes to the Affordable Care Act in the wake of the Presidential Election results. The article explains the need for both sides to work together for positive change. He notes that issues that affect the bleeding disorder community have found victories with both Democrat and Republican administrations. See full article at hemophilia.org.
HFA Produces a Podcast Aimed at Young Adults with Hemophilia
The Hemophilia Federation of America has started a podcast specifically directed at young adults to encourage wellness in this growing demographic. The first podcast became available on October 26, 2016 and began with an interview on using exercise such as weight training for those with bleeding disorders. Listen and learn more at buzzsprout.com.
Adverse Events in Trial Dent Hopes for Roche Hemophilia Drug
Four patients in a clinical trial of an experimental hemophilia medicine from Roche have suffered serious adverse events. Problems related to blood clots appeared and patients were still experiencing breakthrough bleeding while on ACE910, the new medication under investigation, also known as emicizumab. See full article at reuters.com.
To Treat One Rare Blood Disorder, Scientists Exploit Another
In a study published in Blood, the Journal of the American Society of Hematology (ASH), researchers report that they have developed a new therapy for hemophilia based on research of a common clotting disorder, factor V Leiden. Research on the treatment is still in the early stages. See full article at medicalexpress.com.
Voices of 5000+ Patients: 1st National HTC Survey Experience
The CDC and the Hemophilia Federation of America hosted a webinar with our HTC's Brenda Riske and Rick Shearer along with UCLA's Judith Baker, leaders in creating the first national survey of HTC patients. They discuss methods and results from this survey of patients and the care they receive at their HTCs. Access this webinar at YouTube courtesy Hemophilia Federation of America.
Prescription Benefit Program Changes for Recombinant Clotting Factor Product
Patients who are using CVS/Caremark and have the "Advanced Control Formulary" plan may need to check their prescription coverage. Helixate FS, a product to treat hemophilia A, is being removed from the prescription benefit program for a limited number of patients. See full article at hemophiliafed.org.
FDA Warns of Risk of Hepatitis B Reactivating in Patients Treated for Hepatitis C
The US Food and Drug Administration has issued a warning about the risk of hepatitis B becoming an active infection again in patients who have had a previous infection and are treated with certain antiviral medicines for hepatitis C. In a few cases reactivation has resulted in serious problems. See full article at fda.gov.
Virtual Reality Games Make Infusions Easier on Young Patients
A pilot study at Nationwide Children's Hospital in Ohio, with a grant from the NHF, is currently testing the feasibility of integrating virtual reality technology into clinics. The feedback on the headset to help children reduce fear and anxiety during infusions has so far been positive. See full article at newswise.com.
New Method Identifies Female Carriers of Hemophilia A in Study
Chinese researchers have identified a new, simpler method to identify women who may be carriers of the gene that causes hemophilia A. The new method makes it easier to identify the condition, which usually requires more involved testing. The study was published in the journal Biomedical Reports. See full article at hemophilianewstoday.com.
Greeley Tribune Shares Ride The Rockies Experience of HTC Patient
In June Dr. Marilyn Manco-Johnson and one of her patients, Kyle Haas, participated in Ride the Rockies, a 400 mile cycling journey across Colorado. The Greeley Tribune recently published a story about Kyle and his experiences with hemophilia, cycling, Ride the Rockies and overcoming challenges. See full article at greeleytribune.com. See our June newsletter coverage of the story here.
PPTA Updates News Release About Zika Virus and Safety of Blood Supply
The Plasma Protein Therapeutics Association (PPTA) provided an updated news release about the Zika Virus and the safety of the blood supply. Evidence shows that existing manufacturing methods are fully effective against Zika Virus. The safety of the plasma protein therapies is not affected. See full article at pptagolbal.org.
Sangamo BioSciences Receives Orphan Drug Designation for SB-FIX
Sangamo BioSciences announced that the FDA has granted orphan drug designation to SB-FIX, the company's genome editing product candidate for the treatment of hemophilia B. Phase 1 of a clinical study in adult subjects with the disorder should begin before year's end. See full article at prnewswire.com
National Hemophilia Foundation Videos Win National Awards
The National Hemophilia Foundation won two silver awards in the 23rd Annual National Health Information Awards Program. One video shares information on managing bleeding disorders in the workplace and the other explains half-life of factor. See full article and access videos at hemophilia.org.
Vonvendi Now Available to Treat Adults with von Willebrand Disease
Vonvendi, the first & only recombinant treatment for adults affected by von Willebrand disease, is now available in the United States. The medication replaces the VWF missing in patients affected by von Willebrand disease. The disorder is the most common inherited bleeding disorder. See full article at shire.com.
Additional Lots of Kogenate FS Included in Voluntary Recall
Bayer also announced an extension to their recall on lots of Kogenate FS that were recalled in July due to potency issues. Testing showed that more lots fell below the range and more were found that needed to be included in the recall. The list of lots of the recalled products and more details are at hemophilia.org.
Extension of Voluntary Recall for Additional Lots of Helixate FS
CSL Behring announced an extension to a previous recall of two lots of Helixate FS that were recalled in late July. The recalled lots were added as a precaution because they were shown to be losing potency. The new recall includes a list of all the lots and their expiration date of the medication. See details at hemophilia.org.
Bruising Uncommon in Very Young Children with Blood Disorders
Researchers looked at patterns of bruising in children younger than six years old to understand the extent to which their bleeding disorders affected the number, size and location of bruises. Because bleeding disorders can go undiagnosed in young children and they are vulnerable to abuse, the study aimed to distinguish bruising indicating a bleeding disorder. See full article at hemophilianewstoday.com.
Biogen Announces Hemophilia Spin-off Company as Bioverativ
Biogen revealed their plan to spin-off their blood disorder products and candidates into a separate publicly traded company. The new company will be known as Bioverativ and is slated to launch in early 2017. It will include their drugs Eloctate and Alprolix as well as gene therapy research. See full article at fiercebiotech.com.
BloodStream Podcast Recaps NHF Annual Meeting and WFH World Congress
Hemophilia advocate James Patrick Lynch, recapped his experience attending and participating at the NHF Annual Meeting and WFH World Congress in Orlando. He was invited to speak and was a part of several events such as Powering Through NHF and the Impact Awards. See full update at bloodstreampod.com.
UniQure Shares Updated Clinical Data from Gene Therapy Trial of AMT-060
Gene Therapy research from uniQure on their small trial of AMT-060 was updated at the WFH World Congress held in Orlando, Florida. The results showed sustained improvements by all patients, with durable levels of Factor IX gene activity for several weeks after treatment. See full article at hemophilianewstoday.com.