Spark Therapeutics and Pfizer Announced Data at WFH's 2018 World Congress in Scotland
The following is an excerpt from a press release from Spark Therapeutics. Read the full press release here. Spark Therapeutics, a fully integrated gene therapy company dedicated to challenging the inevitability of genetic disease, and Pfizer, announced, with a cumulative follow-up of more than 18 patient years of observation, all 15 participants in the ongoing […]
Genentech Announced Full Results of Phase III Haven 3 Study at WFH's 2018 World Congress in Scotland
The following is an excerpt from the press release from Genentech. Read the full press release here. Genentech, a member of the Roche Group, announced the full results from the Phase III HAVEN 3 study evaluating HEMLIBRA® (emicizumab-kxwh) prophylaxis administered every week or every two weeks in people with hemophilia A without factor VIII inhibitors […]
Genentech Releases Statement on Hemlibra Patient
The following is an excerpt from a statement from Genentech. Read the entire statement  HERE._________________________________________________________Genentech has recently learned that a patient in the Phase III HAVEN 2 clinical trial developed a neutralizing anti-drug antibody.For this patient, the anti-drug antibody resulted in reduced efficacy of HEMLIBRA.
Bioverativ Highlights the Impact of Humanitarian Aid in Hemophilia
The following is an excerpt from a press release from Bioverativ. Read the entire press release here. More than 15,000 people with hemophilia in 40 developing countries have already been treated following Bioverativ and Sobi’s unprecedented donation of factor therapy to the WFH Humanitarian Aid Program Bioverativ Inc., a Sanofi company, joins the global hemophilia […]
FDA Grants Breakthrough Therapy Designation for Genentech's Hemlibra
The following is an excerpt from a press release from Genentech. Read the full press release here. Genentech, a member of the Roche Group, announced today the U.S. Food and Drug Administration has granted Breakthrough Therapy Designation to HEMLIBRA for people with hemophilia A without factor VIII inhibitors. Breakthrough Therapy Designation is designed to accelerate the […]
Final marketplace rule will revive discrimination and raise out-of-pocket costs for Americans with pre-existing conditions
The following is from a press release from the American Heart Association. Read the press release here. A group of 21 patient and consumer groups issued the following statement today on the 2019 Notice of Benefit and Payment Parameters final rule: This final rule will severely weaken key benefits that underpin core consumer protections for Americans […]
CVS Health Announces $260,000 in New Support for Bleeding Disorder Programs
The following is an excerpt from a press release from CVS. Read the entire press release here. Company to provide funding to National Hemophilia Foundation, Hemophilia Federation of America and local organizations across U.S. CVS Health announced more than $260,000 in charitable commitments to local and national hemophilia and bleeding disorder programs across the country. The announcement […]
Genentech Offers Hemlibra Update
Note: The following is an excerpt from a press release from Genentech. Read the full press release here.______________________________________________________________________________________Given the recent dialogue, we are reaching out to clarify the facts surrounding five people with hemophilia A with inhibitors to factor VIII who have passed away while receiving Hemlibra®Â (emicizumab-kxwh).Since 2016, five adults with hemophilia A with inhibitors taking […]
Genentech Medical Communications Line Available to Answer Questions About Hemlibra
HFA was informed by Genentech on March 26, 2018, that a total of five patient deaths have occurred while the patients were using Hemlibra (emicizumab-kxwh). Genentech has little information that they can presently share about the circumstances surrounding the most recent patient deaths; however, Genentech could confirm that the patients had received Hemlibra as part of compassionate use and expanded patient access. Genentech has a Medical Communications line at 1(800)-821-8590 for patients, concerned community members, and healthcare providers who seek further information. […]
Reposting: HFA & NHF Issue Joint Statement Regarding Shire Lawsuit Against Genentech/Roche
[Reposted from January 16, 2018]In the past few weeks, we have received many inquiries regarding the scope of the injunction Shire is seeking in its lawsuit against Genentech/Roche. Certain information has become public during this period that enables NHF and HFA to provide some limited guidance as to the scope of the injunction that Shire […]